Liviana's Journey

Living and Loving

2012-01-31T11:02:00.006-06:00

My apologies (again) for not posting for so long. First and foremost I wanted to let everyone know that on December 21st we found out that Adelina is completely unaffected by MLD. She isn't even a carrier! We were so completely overjoyed with the news. Brad was out of town at the time and I called and said, "We got Adelina's test results"...his voice cracked as he said, "Oh No"...I told him "she is unaffected, not even a carrier". I heard such a tone of joy and happiness in him I have not heard in so long. I felt like I had one the lottery accept a million times better than the lottery. It was life we had one for one of our children. I have reread the e-mail with her results dozens of times. I do not think we had any idea how much the fear was consuming us until we knew she was healthy. I caught myself or some time, and still do, forgetting that we get to see her grow up. That is SUCH a simple thing we all expect when we get pregnant and give birth but it has not been a reality we have known with two of our kids. She is a chuncky,beautiful girl. She is happy and sweet and smiley. She loves Aria and Miles, she laughs out loud at Giovanni and her and Liviana have had some of the most amazing little "chats" that absolutely melt my heart. I have no doubt that she was an amazing gift from above at at time that we needed all the light and love we could get.

Gosh, since my last post we have had Thanksgiving, Christmas, a new year and birthdays. I had anticipated the holidays being a difficult time for us since it coincided with when everything in our world changed a year prior. I ended up being completely wrong. I thought the holidays were wonderful. We had my brother, his wife and their new daughter and my mom here for Thanksgiving. We ate good food, drank wine, smiled, laughed and enjoyed a house full of kids. We went to my sister-in-laws hometown in Kansas for their daughter's baptism which meant seeing people I haven't seen forever and more smiles and laughter. Aria turned 7, we had cupcakes and gifts and she had two friends over the day before Thanksgiving.

The winter has been unseasonably warm which has really helped my mental state this year. The sun and warmer temps are in sharp contrast to the snow covered ground last year as we dealt with MLD and our preparation to leave for Italy. The kids and I were even able to get outside and play in the last 2 months...in January...in Nebraska. To be able to take Liviana outside for sun and fresh air was such a blessing. She gets so excited when I bring her taxi (AKA, stroller) in and tell her we are going outside. Just yesterday it was 69 degrees...Amazing!

I can picture Liviana enjoying the holiday season right along side Aria, Miles and G. I remember when she was almost 2 and our Christmas tree had to be decorated only half way up because Liviana would "undecorate" the entire thing. As the kids decorated I sat on the couch and for a brief moment I could see Liviana hanging ornaments...tall with her curly hair and a sweet dress. I smile the instant I have the thought but then I have to wipe it from my mind or else it turns to sadness...I prefer the brief, sweet image to stay. She was the one who got to pick out our tree this year. We went when we knew it would not be too busy. She got to see the horses and Christmas lights out at Santa's Woods. Our sitter and friend, Annie came with us to help with the tornado G will Brad and I had our arms full with Liviana and Adelina. We totally are like the Griswolds when we go places :).

Christmas was also wonderful for our family. First, my mom visited, then my brother and his family visited again. Liviana loves being able to see everyone. She does get a little overhwelmed with activity at times. Christmas day we had to give her a PRN med because her little muscles started spasming and she just needed a little down time to recover. Brad and I both find Christmas shopping for Liviana to be an emotional experience. All of the kids needed clothes and that was really mainly what they got from us this year. Thankfully, they all seem to like getting new pants or shirts so it is a win-win for everyone. I love picking out things for Liviana. I get her mostly stretchy pants since she has to sit or lay down all day. I figure they are more comfortable than a thicker pant. Unfortunately, most of Aria's old pants were jeans or stiffer material that aren't very comfortable for Livi. Aria also had a lot of sweaters and Liviana overheats very easily so I try to not put her in sweaters often. Even though I can still pick out cute new tops and pants I still get so sad. When you look for clothes for your kids you picture them, well...walking, standing, running in the yard. I do at least...I always picture them standing in the outfit. It is hard to think of what you are missing and the harsh reminder of that when you are doing something as simple as picking out a new dress for your daughter. She loves dresses. Every single day she would put on a dress and then another, and then another until the floor by her closet had turned into a pile of temporarily discarded dresses waiting for the next day's fashion show. I have to consider if it will work with her feeding tube, will it be comfortable for her to sit on all day. In the end I got her mostly pants and shirts but her Aunt Crissi got her a beautiful purple dress that she got to wear for her birthday party.

Toys...a no-brainer for an almost 4-year-old turns into another difficult experience. Brad and I wandered the aisles trying to find something for a child who can't use her arms or legs, can't hold her head up, can't talk. We would pass each other in the aisles and neither of us would speak. I know he was thinking the same thing I was as my eyes were welling up with tears. I remember picking out her baby accessories just two years prior. She loved to dress them, put diapers on them, carry them in a "sling", put them in their bed. Books...books are always good. She loves when we read to her. We also thought of things she can visually watch and a vibrating pillow for her legs. She has had headphones for a while because she likes to listen to music but we could not find any that fit well so we got her some new headphones, a microphone she can make noise into and play it back. She had a wonderful Christmas and in true Liviana fashion, I think she liked the clothes best :).

Giovanni is a little tornado during the day but he seems to gravitate and love all things domestic so we got him a little kitchen of his own that has its own space in our kitchen. He also got a vacuum that looks just like our Dyson from my mom (Dooda). If he was old enough to actually vacuum, do dishes and cook effectively I would have my very own built in Alice (from the Brady Bunch :)). He likes his clothes too. He is just like Liviana and changes his clothes dozens of times a day but somehow always is pantless when company visits. Pantless with his shoes on...that is G.

The new year of 2012 brought...sleep. Let's face it, when you are parents to 5 little ones you are generally in bed at the stroke of midnight. The kids were upset they missed the celebrations so the day after New Years Eve we put up streamers and blew up balloons and had a mini-celebration. In 2012 I pray for miracles for Liviana and Giovanni.

The next big day was Liviana and Giovanni's birthday. Livi was turning 4 on January 18th and Giovanni was turning 2 on January 16th. Their little lives are so tied together. I can't thank all of the wonderful people enough who came out to celebrate their birthdays. I know Liviana can't say it herself but I know she loved seeing people come and wish her well and talk to her. I could see it in her face. We stretched the day out over several hours and had an "open house" type of format so she would not get too overwhelmed. When I made her meal that day for her feed pump I told her I put a cookie in just for her...and I did. Why should she not get a cookie for her birthday just because she can't eat it by mouth :). I would have added a slice of carrot cake but she seems to have issues with dairy and the cream cheese icing may have been to much for her. You can see by the photos below the happiness she has on her face. I adore the photo of Brad and Liviana...it will be getting printed :).

Next up was my anxious anticipation waiting for the flight arrangements for Brad and Giovanni. Yes, they were heading to Italy for Giovanni's 1 year follow up. In fact...that is where they are as I type this. To say I miss Giovanni is a gross understatement. I gave birth to him a little over 2 years ago and have never been away from him outside of normal activities like working or when I had my every other day, 8 hour "visitation" with the other 3 kids while in Italy. I was by his side through the surgery, chemotherapy, treatment, etc. I slept with him in a tiny crib at night and woke up with him at 5:30 when they came and took blood from his port and again at 7am when the cranky housekeeper stormed in to clean the floors. This has been so hard but I am eternally grateful for Brad and his strength, love and dedication. G is in good hands. Our friend, Jason went along with him for moral support and to give Giovanni the benefit of two awesome dads.

The last few months have been very difficult for my sweet G. He screams and cries in pain at night. His hands and feet hurt which I am positive is the peripheral neuropathy we also saw in Liviana starting around the same time, only slightly later. Their behavior is identical accept G screams more. He tries to shove his hands and feet under whoever is sleeping by him. He raises his leg in the air and shakes it violently, he screams and cries and it breaks my heart. I lay there away trying to console him. I try to rub his feet, which sometimes helps but other times makes him recoil...he pulls away in more pain more often than not. I have tried all I can to help him. I started giving him his B12 at night before bed and I started using first, Frankincense oil and then St. John's Wort Oil on his extremities before bed. For 2 weeks we saw a HUGE improvement and then it was back to how it was before. I have spoken with our doctor here at length. A pharmaceutical drug would be the next step although I have not exhausted all of my other natural options first. The benefit we have seen with the oil has been fabulous although not always consistent so I persevere trying to determine what is best for him and if that ends up being neurontin then that is what will do. I have woken up in the mornings feeling nauseous with my stomach in knots about seeing Giovanni walk down the same road as Liviana. I really can't even put into words the pain that causes me heart. To already know what he "may" face and not know exactly what he will face could easily break me. Seeing him tear around the corner with is vacuum though snaps me out of that and I try to face only what I have before me.

I don't have a whole lot of details from his testing so far in Italy. He has had his MRI though and tomorrow is his nerve conduction test...both very telling along with the obvious bone marrow aspirate results and cerebral spinal fluid results. My sweet, sweet boy. Just like Liviana, I wish everyone could spend a day with G.

The trip to Italy has been made much, much easier thanks to our wonderful friends over there. Michelle and Cristiano, Erica and Stefano, Rose, Antonino and D....all such blessings to us. It makes me smile knowing that G is getting love and hugs while he is there and not just daily hospital rounds. I miss you all and hope I will see you soon, although I will admit to not missing Milan or the hospital. G and Brad will be home late Saturday night around 10pm. I Can.Not.Wait!

Here are some photos of Giovanni from January 12th...I think it was 60 degrees that day. The doll in his hands is his baby..."Gee"...she goes everywhere he goes and it shows on her...I hope she doesn't fall apart one day. If you have ever seen a doll like this let me know so we can have a back up "Gee".

Aria and Miles are doing great. I am afraid though that they are going to get spring fever and we are going to still get a full winter ahead of us. I can't wait for soccer to start again and to be able to get out with the whole family. We are walking distance to the school and I look forward to loading up Liviana and G in the stroller and heading over to get them from school. The air and sunshine are so good for the spirit.

Miles is such a loving and sweet boy. Brad took him to lunch one day after school and Miles suddenly said, "I miss playing with Liviana". He then went on to say that he remembered playing with her and wanted to be able to play with her again. Brad gave him suggestions for how he can sit with her and play cars on her lap or read books with her. My heart aches and I get a lump in my throat thinking of them losing their sister. When ever they are drawing or doing crafts Aria always makes something for Liviana and puts it on her lap. She made a book for her where she had to find the hidden picture...it was so cute. Miles wants her next to him at the dinner table and loves to make her laugh. Her laugh is so amazing to hear...we are blessed to still hear it. Today I called Liviana an angel and Miles got upset...."She is not an angel, she is a person here with us". It reminds me of the conversation in Italy when he suddenly told me he didn't want her to become an angel, he wanted her to stay with us. No child should have to go through what Aria and Miles are along side their siblings. Right now he is making a house for Giovanni to play with when he gets home from Italy out of a box. He had also been looking at pictures of him on my old cell phone. Much to much for a little person to have to face.

All of our kids are such a blessing. Brad and I had a conversation one morning about how each of them were placed here at just the right time knowing what the future held. I can't imagine not having the joy of Aria and Miles and just facing MLD in our lives. I can't imagine not having Adelina to bring light where there was sadness and I can't imagine not having Liviana and Giovanni for the monumental life lessons they show to so many. Not matter what we face with the kids we are truly blessed each day. I never have a pity party or feel sorry for myself....how can I when I have these sweet faces to look at each day.

I have found through all of this that I really don't like to be alone. I am still somewhat of an introvert but I don't like alone, "me" time. The concept of women proclaiming the need for "me" time eludes me. Each time I have had a chance to run an errand on my own to the grocery store or target I can't get back fast enough. Being alone with my own thoughts is not a good thing. I don't know that I have ever left the house by myself on an errand and not ended up crying in the car because I had the down time to think of Liviana and my fears for Giovanni. My fears for Giovanni have been weighing so heavy on my mind so on many of those outings I like to take Aria, Miles or G so I have someone to talk to and keep me focused on the present. That is the gift they give me each day.

It has taken me a cumulative of about 6 hours to get this blog post done. Even with Giovanni gone I have 2, then 3, then 4 kids home after school to take care of, feed, love, change, love, kiss, love...blog posts get pushed to the side. I will, I will, I will try to get better. Brad has the laptop with him in Italy so I will try to use it more and get blog posts done at night as our evenings wind down. I really do want to keep everyone up to date and share to some extent but I struggle with that taking away from my time with the kids. I have the same struggle with my business each day...that is another whole blog.

Love to you all. Thank you a million times to our friends on both sides of the world. Annie, you have been priceless this week!

Hug Your Babies!

~Life~

2011-11-14T14:12:00.005-06:00

So much has happened since my last post. Most notably, we were joined on October 21st at 5:13 in the morning by a beautiful little girl, Adelina Faith Price. Here she is at 2 weeks old.

Adelina has been a huge joy for us all. At this point (though she is always changing) I think she looks like a cross between Giovanni and Liviana. She definitely has Giovanni's nose and her eyes look so much like Livi's did when she was born. The spider like eyelashes are definitely in her future. The kids just adore her. Just like when Liviana and Giovanni were babies, Aria and Miles start and end their days with a kiss for their new sibling. They argue over who gets to hold her next and lay beside her. They have been excited to see her changing and growing already...the start of smiles, the eyes open all the time, the little squeaks and sounds. Liviana just turns to butter when I hold Adelina on her lap. She looks so peaceful and happy. Livi makes her happy sounds and turns her face towards the baby. A couple of times Adelina has given Livi "kisses" as she turned towards her cheek and rooted around...so sweet.

The days after Adelina's birth were full of joy with her arrival but I did find myself in uncharted territory emotionally. I really could not even look at Liviana for about a week without the tears starting to flow. To feel such joy and such sadness all at once was overwhelming. I felt guilty taking care of the Adelina when I normally spent my day taking care of Livi in the same ways...as you would an infant. I found myself reminiscing of when Livi was first home at 4 weeks old and all of the similarities having another newborn girl. I felt so much sadness to hold new life and know that Livi would eventually bring us the emotions at the other end of the spectrum from that life. Even typing this brings those emotions to the surface. New life forces us to reflect, pause and remember and so much of that reflection I saw when I looked in Liviana's face and those huge, beautiful, eye lash covered eyes. The new life represents hopes and dreams for Adelina and the painful reminder that those hopes and dreams I had for Liviana are forever gone. It is not to say that each day I don't look at her with different hopes and dreams but the growing up, going to school, playing with friends, learning to read, playing sports...those things we think of for all of our children, won't happen for her.

By the second week of Adelina's life the post-hormone storm of having a baby was settling down. The tears when looking at Livi were not as often and I was starting to figure out my days and how to balance caring for and loving on Liviana and Adelina. She is a pretty easy going baby. She has had her moments as I try to figure out if she has dairy sensitivity to what I eat or if she has a foremilk-hindmilk imbalance with nursing. It is all working it self out and she loves the weekdays when it is quiet around the house and loves the weekends less :).

3 days after we welcomed Adelina, my brother Tony and his wife welcomed their first baby, a girl named Jensen. I will get to meet her at Thanksgiving and I absolutely cannot wait. I became an aunt for the first time and think that seemed almost as awesome as having my own 5th child.

2 weeks before the baby arrived we moved. I was 38 weeks pregnant and trying to wrap up sessions, photo processing, orders, e-mails, etc. Nesting takes on new meaning when you move at the same time you nest. I was confident that the baby would not arrive until we were settled. Brad did almost all of the moving by himself and I appreciate all of his hard work so much. He stayed pretty focused on how I was feeling and if he had an inkling that I was going to go into labor soon he started rushing around getting more things done to prepare.

The kids and I mostly made the first move to the new house and then Brad made all of the return trips. There was one day that I went with him to pack up the toy room and my desk. He had to run out while we were there so I was left there, all alone for about an hour. I cranked up the Pandora on my phone as a distraction to the silence in the home. It didn't help my mind much. After a while I was texting Brad and wanting him to return soon. I knew the house meant a lot to us but I was not expecting it to be so difficult moving out. While we had moved in a year ago in September, we had only actually lived there about 7 months because of being in Italy. This was the home that Liviana last walked, last talked, last went up and down the stairs. As I went from room to room I would see glimpses of her. As I stood in the living room I vividly remembered being in the house talking with Greg, the landlord, before moving in. Liviana was running from end to end of the room, laughing hysterically with her left arm swinging back and forth. I remembered her laying in her bed shouting the ABC's instead of sleeping, I remembered as she got more unsteady before we ever heard the words, Leukodystrophy, Miles making sure he held the front door for her as she crawled down the front step. I went to the toy room and every time I turned around I found something of hers that she no longer could play with...that she used to love playing with. Her baby set we got her on her 2nd birthday with the carseat and bed, her drawing table for her lap, her xylophone...I came across it all. I walked in the kitchen and saw her helping me empty the dishwasher and walking up and hugging my leg saying, "Lub u mommy". I was crying at this point and waiting for Brad. When he got there I dried my tears (hiding it is better than facing it for me) and said, "let's get out of here". I didn't go back after that. Part of me wanted to, just because I have such an odd attachment to the place. It is as if walking away is taking more steps away from those memories of Liviana. Brad said he experienced the same thing being there so I appreciate him putting in so much time there by himself despite the difficulty.

This is a busy week. Brad will be out of town from Tuesday night to late day Thursday. Miriam from Italy will be here this week and both Giovanni and Adelina will be doing blood draws on Thursday. Giovanni is getting labs done for his next scheduled follow-up and Adelina's blood will be taken back and tested to determine if she has MLD, is a carrier or is unaffected. The thought of even having to take her in to find out her MLD status makes me sick to my stomach with anxiety. I can't even fathom getting that news...it is really too much to even think about...to write about.

Ironically, the testing date for Adelina and Giovanni is November 17th which is the one year anniversary of Liviana's diagnosis of Leukodystrophy. It is one year from sitting in a hospital room as 3 doctors gathered and told us, "she doesn't have a tumor but we are seeing very clear brain signals that are indicating something called leukodystrophy....there is nothing we can do". I remember going out and calling my mom and going into shock, freezing cold and shaking from head to toe. The last year has been a blur...it honestly has. One big blur filled with the moments of intense clarity. It still, other times, seems so surreal, like it hasn't all really happened. Such an absolutely massive change in our lives in one year. As much as I sit and think about how this has impacted us I think of how it has impacted Liviana. What does she think in her mind about the last year? Does she remember running, playing and talking? Does she understand what happened? Does she dream of running and playing again? I hope she has no sadness.

Because of MLD, this time of year will never be the same to me. I really dislike the thought of the holidays. We found out 3 days before Christmas the confirmation that Liviana had Metachromatic Leukodystrophy and so did her brother. The air, the season, the temperature, leaves, snow, Christmas trees, Christmas carols...they all remind me of the most painful time in our lives. I hate that. Maybe it is a blessing we moved since being in the same house would have made these unwelcome anniversaries even worse.

I also don't welcome this "one-year" because it means I can no longer say, "remember this time last year, Liviana was...bowling, learning her ABC's, potty training, changing her clothes 10x a day, posing for my camera, going to the library with me, saying, "byeee new house" every time we left, asking for her sunglasses....those times aren't recent anymore...they are getting further and further away. I fear those memories and her voice in my mind not being as clear one day. Each one of these anniversaries will just be a reminder that we are further from the "remember when" days.

I don't ever want to focus myself so much on how she "used to be" for fear of minimizing who she is now. I adore and love her just as much now as ever. She still makes me smile and laugh, just in different ways. She has Brad's humor..always has. She laughs at the slapstick comedy of life. Her favorite show (besides Calliou) has always been old reruns of America's Funniest Home Videos. I remember (see, doing it again) last summer (2010) she would sit down with Brad and I after the other 3 were in bed and watch the old AFV shows...laughing out loud. She still laughs at them. I told Brad she would be the child who watched the Adam Sandler movies with her when she got older because I don't. She has an awesome sense of humor. Her laughter fills the entire house. It is fabulous!

Livi was in the hospital last week for a day and a half. The pesky virus that Miles and Giovanni had made its way to her but she doesn't get over it as easily. At first she was just sick but in a matter of a few hours she had labored breathing and was barely responsive when I tried to talk to her. We quickly decided to take her in. Brad picked up Aria from school and left with Liviana. They chose to admit her. Her oxygen saturations were running between 92-98 but were more consistently higher than lower. Her lungs were still clear, just mostly bronchial congestion. Miles, Giovanni, Adelina and I visited her and brought her more of her food. When Aria got home she came to me crying and said that she was upset she didn't get to go see Liviana. I assured her that she would be home soon, which made Aria happy. I have to admit, when they got home her condition still made me feel uneasy. She just wasn't herself and it was one of those times where MLD scared me with the possibilities of what could happen in such a short amount of time. By the next day she was better but still running a fever which we battled on and off for the next 24 hours. This virus seems to be lingering for everyone so I am suctioning her often and hoping we can make it through without another hospital trip.

I have been working on this update across 2 days and as expected I have forgotten the other things I had planned to share. I would like everyone to keep the families of Alyssa and Anaya in your thoughts and prayers. Both of these fighting, warrior girls became angels after battling MLD and Krabbe Leukodystrophy. It is heartbreaking to think of what these parents have gone through and they are never far from my thoughts. Liviana and Giovanni have two new angels watching over them.

I do not know how long to expect the test results for Adelina to take. I believe we are sending off blood work to be tested here in the US as well so I am expecting just a couple to 3 weeks. Please keep her in your thoughts and prayers and pray she does not have MLD...I truly don't know how I would handle that news.

That will have to be all for now since my mind is failing me. I am gearing up for two interesting nights with Brad out of town and 3 night waking children (who almost always wake at the same time). Giovanni is the most challenging, as he seems to be in pain when he wakes and is difficult to console. Think happy, sleepy thoughts for me.

I will update as I know about Adelina.

Hug Your Babies!

Day to Day...This Post Turned Into a Novel

2011-09-28T09:48:00.012-05:00

I have had many people tell me that you have to take this trip day to day, even hour to hour. That is so true. You really have to stay living in the exact moment because thoughts of the future or the past both can be too emotionally daunting. This morning I had to go through my photos on Facebook one by one to make sure that they were all set to "Friends" after a friend told me that they were showing up publicly. I did not make it through all of the albums before sitting at my desk crying over photos of Liviana from last year. It did not help that I had an emotional song playing on my computer from a slideshow I had just uploaded for a client. I never know when those moments will hit. If I talk about her to others I feel a lump in my throat, making the clothing shift for fall for the kids was unexpectedly and overwhelmingly emotional, seeing old photos and videos is such a mixture of joy and sadness. I would give my arms and legs to see her run into the room.

To update from my post a month ago...We did not go to Italy for Giovanni's follow up at the end of August. I contacted them and let them know that there was no possible way I would be able to leave Liviana for 2 weeks. It took some time to get them to understand our situation from a real life perspective and not a clinical perspective. Anything could happen to Livi in 2 weeks and as her primary caregiver my absence would have been detrimental to her. Giovanni was not receiving any treatment and rather, had to have another MRI, blood work, bone marrow aspirate, EEG, EKG, Chest x-ray, hearing and vision tests and several other assessments. Given that we live in a pretty medically progressive city, I was confident the tests could be performed here. In the end, they agreed to send two doctors here to collect his blood work and bone marrow and perform his motor skill evaluation. Because the samples are sensitive and had to be tested soon after collection they left within a few hours of his test, to return back to Milan. It was really nice to see Laura (pediatrician) and Francesca (neurologist) again but only on our turf this time. They were really happy to see Giovanni and we had them over one of the evenings to see the other kids, especially Liviana. They thought Omaha was so beautiful. Yes, everyone...it really is compared to the areas they are used to living and where we lived. It is green and lush and they added in "so quiet". They have already told me they will plan to come back for his February follow up if necessary and they will plan to be here longer so we can show them Nebraska. We all warned them that Nebraska is February may be a little chilly and snowy and given that they think 50 degrees is freezing, they may be in for a shock. I am so, so grateful beyond words that they were able to come here instead of Giovanni and I going back there for two weeks.

I was really hesitant going into G's MRI. There is not any clinical or research evidence that anesthesia can speed up the progression of the disease but there is quite a bit of anecdotal evidence from parents who know their children and have seen just that happen. I spoke with this doctor and the anesthesiologist about the issue. Both agreed there is no clinical evidence on the issue with pre-symptomatic children but that there are certain anesthesias they know to avoid with myelin degeneration issues. He was under anesthesia for 2.5 hours for a detailed MRI, blood draws (25 vials) and bone marrow aspirate. When he came out he was a child possessed. He screamed psychotically for about an hour. He was clawing at me, trying to jump from my arms, freaking out about anything touching him...he was absolutely hysterical. They decided he it was from the Versed that was given to him as a pre-med before going in. The screaming episode further worried me because I know that such upset has an impact on the brain as well. For two days after the MRI he sounded like a 600lb. man with emphysema...I am assuming the combination of the breathing tube irritation and screaming caused it all.

Dr. R contacted me about a week later with his MRI results. He showed very slight change from his February MRI to his May MRI and again on the August MRI. That is the downside. The upside is that he showed some slight improvement on the MRI's metabolic readings of Choline from his May to August MRI. They still don't know enough about how the MRI metabolic readings relate to MLD but I will take whatever we can get. They will expect to see the change on MRI before clinical manifestations of demyelination begins. They also would not expect his treatment to "work" at this point, as the new cells don't get to where they need to be in the brain until about a year post treatment. During this in between time, he has the cell presence in his peripheral blood but it has yet to fully cross the blood-brain barrier and integrate there, as it needs to. To say it is nerve wracking is a massive understatement.

I have been feeling literally sick to my stomach as I have seen some things in Giovanni, just in the last 3 weeks that are some of the early things I saw in Liviana. At the time with Livi I never would have thought they would lead to such a devastating diagnosis...I chalked them up to being odd, but not a sign of something so serious. Now, knowing what I know and seeing the same things in Giovanni....well, it leaves me 150% terrified. Just 2 weeks ago I got him up from nap and brought him down to his seat for some yogurt. Within 10 minutes of eating the yogurt he was in a full body shiver from head to toe. Liviana, early on showed temperature regulation issues and I am now seeing those in Giovanni, although I do believe this is earlier than I saw it in Liviana. His balance and walking is getting more unsteady as well. Just since the doctors from Italy were here in August he is more unsteady. He loses his balance more easily and is falling more than he was just a few weeks ago. This too is earlier than we saw this in Livi. I hate to speculate that it is all related to the anesthesia and testing but can't help but see that it falls in line so soon after the testing. He is night waking and seems uncomfortable which Livi did also. He scratches at phantom things and seems bothered by his feet, or his head when we don't see anything there.

All of this is unfathomable to me. I see this little boy who is hilarious, adorable, rambunctious. It is hard to look at him knowing what I know is happening to him. We do not know how and if the treatment will work. It is a challenge for me mentally to deal with that reality each day. I am eternally hopeful and optimistic but sometimes fear that optimism will bite me in the rear (or "tushy" as Aria would want me to say). I love him so much and hate that I am so helpless now and can only stand by and wait. I do pump him full of B12, magnesium, Omega-3's, etc. but I really don't know what is happening in his brain and how fast it will take over his little body like it did Liviana's.

Onto sweet, angelic Liviana. I can't get enough of her. I am seriously addicted to her smell, the way she melts in my arms when I hold her. Right now I sleep with her at night. About mid August she started night waking regularly. It seemed to usually be either a reflux issue (which seems almost gone), muscle spasms or just unknown discomfort. She can't roll over by herself anymore and sometimes will get over to far on her side and go onto her stomach too much and be unable to move. It scares me to death. MLD scares me to death. It seems so unpredictable. The mornings that she does sleep later than me I will obsessively creep up the stairs every 5 minutes to check on her because I fear her ending up on her stomach, unable to get her breath, a seizure, an aspiration or any other things that this horrific disease may be doing to her body. You would think that being awakened multiple times a night would be bothersome but honestly, I don't mind it at all. I LOVE cradling her in my arms and feeling her breath instantly calm, her body soften and her nuzzle her head into my neck as close as she can get. It is the exact same feeling you get when your newborn snuggles into you and immediately calms. I am so often reminded of the very first time I was finally able to hold her at 14 days old after fearing we would lose her. It is the exact same peace that comes over me as it did that day. I wonder if she has any idea that she is giving me as much peace and calm as I hope I am giving to her. This last week she is sleeping better, although we have had a couple of nights with horrible spasms. They get so bad I have to hold her arms because she hits herself in the face, unable to control her arm movements. I am working hard to get the right medication balance for her so she is comfortable 24 hours a day and does not have to endure that at all. It is a struggle because I don't think the doctor's office understands the necessary dosing for an MLD child. The recommended dose is really much too low for her and does not provide her with much comfort at all. Anyone who knows me knows that I am very conservative when it comes to medication so my goal is to keep her comfortable and relaxed but NOT sleeping. That dose is going to change as the disease progresses. I work with natural treatments in her feeds to help her also. I rub Magnesium oil on her and have been trying to find other things to help...it all feels like a crap shoot at times. What is working, what isn't...I will keep trying.

The balance of life since school started has been challenging. It is hard on Livi to get her in and out of the car multiple times a day. I have noticed on days we go places and her body is moved into different positions that she seems more uncomfortable those evenings. With Aria and Miles in school it would mean getting her in and out of the car 6 times a day. As a result of keeping things easier on her Brad usually takes the kids to school and picks them up (Miles is out at 11:25 each day). I have told him we need to try to split who gets to pick them up and take them because I feel like I am missing out on their lives outside of the home. Aria and Miles are both playing soccer, which is really exciting but I have missed one of each of their games so far. I would never choose to miss one of their games. I want to be there cheering them on each day. The first time I missed Aria's game it was a cold rainy morning and Liviana was sick and we did not want to get her out. The second time, she was having a rough Sunday and had finally fallen asleep on me when it was time to get ready for Mile's game. Just like I want to be there for each game, I want Liviana to be a part of all we do too. It doesn't seem like an option to me to leave her home with a sitter while we go to a soccer game. It is a difficult situation and one that I know we will continue to face. We are trying to squeeze a not normal family situation into a normal family life. A challenge indeed.

Liviana did get sick a couple of weeks ago. Aria brought home a runny nose from school. Both her and Giovanni had a little runny nose for a few days. Miles, of course never gets sick...he has an iron immune system. Livi however faced greater challenges when it passed to her. Because of her MLD she has a hard time clearing the congestion herself. I worried so much about it going to pneumonia. She sounded terrible and was having a hard time breathing at night. I was able to get a suction machine, at the urging of other MLD parents, from home health. That seemed to help her although the suction tube is too large for her and the correct size is on back order. She kicked the colds tushy :) in about 5 days with no impacted lung issues. She is so stinking STRONG. She already is at more risk for lung related issues because of her CDH and she makes it through with unscathed....she will always amaze me.

A wonderful, amazing woman from high school, Danielle Kuhn Holtzman sent the girls the CUTEST matching outfits. I was excited to take Aria and Liviana out for photos recently and how off their love and cuteness. The outfits are from HERE...they are so cute and much appreciated! Here are a few of the photos:

As I have said before, Aria just ADORES Liviana. I will see her sitting holding her hand on the couch. They all give her hugs and kisses before they go to bed (G is always kissing her) and she gets the biggest smile on her face. Miles is protective of her like you would expect from a big brother. They all make me so proud for the amazing little people they are despite so many emotional challenges in their young lives.

A few people have asked where the kids are going to school since they are not at OLL this year. Our kids are selectively vaccinated and the school chose to not accept them as students this year. It was a challenge finding that out 18 days before school started but we found them a new school that welcomed us and seems to be a great fit for the kids. They are very happy although they do miss their friends. The OLL community was so supportive and important to us from the time of diagnosis in November and during our time in Italy. We would never want the people there to think we chose to leave the school, as it was a very important place for us in challenging times.

I have also had people ask about the Wells Fargo account. There is still an account in the name of Liviana Price Donation Account. The original account had the fraud charge cleared in July (as we fully expected) and I closed it right away. The new account had been open for a while and works the same way.

I wanted to thank Cindy Maughan for the gift of a Vitamix blender so I could make Liviana's feeds. It is an absolutely amazing machine and I cannot even explain how much easier it made my life and how much money I save on her food using it. You are one of my heros Cindy. You are a beautiful, strong, amazing woman and the spirit in your shines through in your children. I also wanted to thank Kathleen Scott, Katherine Elizabeth, Michelle Gwin and the Hunter's Hope Foundation. They all came together to get a bath seat to Liviana that had previously belonged to other Leukodystrophy angels. It meant so much to me and Liviana. I requested a bath seat for Liviana from OT back on July 28th and she still does not have one from them. Anyone who thinks that the insurance issue when you have children with special needs is easy is kidding themselves. Getting things you need takes an insane amount of time and each day that passes by you lose a little bit of your child. Your choice is to either buy it yourself or network with other parents to get what your child needs. It is those parents I have to thank for helping Liviana be more comfortable and have what she needs.

I have been waiting on her OT/PT scheduling for well over a month as well. I will not get started on that now. The one scheduling I was contacted for was for the Speech Pathologist to come out and "help her on her speech". Once again...a little research into her diagnosis before calling would save me having to say, "she can't talk anymore and won't ever again, thank you". I didn't request SP services for her anyway. Ok...moving on.

This next update is one I have debated back and forth about sharing. Having less presence with blogging is because I am really not comfortable with the public-ness of our situation. At the same time, we have met some AMAZING, kind, caring, loving people and THOSE are the people we want to share our lives with and those are the people we have to thank for so much love and support when we needed it. I realized that it would be better to share the information now, than a sudden update later. So....our "coming out" :)

Thank you to Jennifer Pinkerton for the gorgeous photo!

We are expecting...I am actually 37 weeks along. We found out VERY unexpectedly 2 weeks into Giovanni's treatment. I will be the woman heckling from the back of the room of any Natural Family Planning or basic biology class. I swear I defy all "rules" of conception. Despite everything going on and enormous fears, we found ourselves happy to be expecting...it seemed like a bright spot in what had been such an emotionally difficult couple of months (and upcoming months). The pregnancy caused a roller coaster during G's treatment with them telling me I could not be with him....me refusing to not be with him (because of infection risk to him being perceived risk to baby), them telling me I could not continue breastfeeding him....me refusing to stop breastfeeding him and then the lovely, food aversions seeing the same, green trays of food come in each day (I shudder thinking about it). I am VERY lucky to have amazingly easy pregnancies. I don't have morning sickness and except for some hypoglycemic issues I pretty much breeze through as if I were not pregnant.

We of course, instantly worried about MLD. The doctors brushed that off as a non-concern and said I should be more concerned because I had chemotherapy exposure through Giovanni. The OB I finally saw there said that was a non-issue because exposure was too indirect (that is what my research found) and it was too early. This baby has a 25% chance of having MLD. A fact that is on my mind every single hour of every single day. I knew the moment I saw the positive test that it was a girl, and I was right :). To say they were persistent in testing prenatally for MLD is an understatment. I was also extremely dismayed to be told more than once that I could terminate and that "if parents "here" learned the child had MLD would terminate". It broke my heart. I went through the "termination" conversations from wayward doctors when pregnant with Liviana. I look at these beautiful, amazing children, regardless of their genetic disorders and can't imagine such a thing. What would our lives be without Liviana and Giovanni? So, needless to say, we did not test prenatally for MLD. This baby is a gift...a plan from someone else...a plan we will let unfold naturally.

I did ask our doctor here for the probability of having 3 children in a row with MLD and the percentage is 1.2%. I cling to that percentage even though he reiterated that the percentage is for each child which would be 25%...I still cling to it. The doctors in Italy told me that having 3 children in a row "goes against the rules of biology". While that brought me immediate comfort...the fact that I got pregnant when I did to begin with is a bit against those same rules.

The kids are VERY excited. When in Italy and Liviana was still talking she told me she wanted a girl. I cannot wait to see what joy this little one will bring her. I expect to cry often after her arrival seeing my beautiful children together and the different paths they have each taken us down. Aria and Miles talk about her arrival often and really cannot wait. Aria felt her for the first time last night and the look on her face was so precious. She is already bonding with her little sister.

We will test for MLD in November when the doctors from Italy are here for some blood draws for Giovanni. We will likely end up finding out around the same time we found out confirmation that Liviana and Giovanni had MLD. Let us hope and pray the news will be different. I can't even wrap my head around the news being any other than "she is MLD free".

As if we could keep things calm and simple around here...we are moving also. When we moved her last September, before MLD became part of our world our rent was priced right for us. I was working constantly with my business and Brad was working non-stop on harvest. It all worked out well. In late November everything changed and then changed more dramatically on December 22nd. 3 weeks later we were on a plane for Italy, leaving our jobs, for nearly 6 months. I appreciated those who suggested we live somewhere cheaper but uh...we were out of the country. Moving while we weren't even here was not logical. Our landlord tried to get us to stay here but he could not go as low as we wanted to pay. He tried to find other properties of his for us, but none of them were a good fit for us. In the end, Brad found a home 1 block from the school (which will allow a stroller ride to get the kiddos for Livi, rather than being loaded in the car). The home was newly bought by the owner and needed a TON (understatement) of work so Brad has been working tirelessly day and night to get it ready and done so we can move in before the baby arrives. He knows I need to nest and given that this little one will be born at home, just as Giovanni was...the nest is quite important. At this point, we hope to move around the 7th. I will be 38 weeks pregnant. They completely tore out an upstairs bathroom, expanded bedroom walls, replaced bathroom, redid floors, walls, put in new heating, air and electrical, tiled the kitchen, painted, etc, etc, etc. Bless his sweet heart for working so hard for us.

In addition to all of this I have many sessions coming up and a wedding I am photographing on Saturday. Yes, a 10 hour wedding day at 37 weeks pregnant. Piece of Cake...I am serious :).

So, is this update long enough. Goodness and I just thought of a few more things I could share....next time.

Thank you from the bottom of my heart to those who are standing by us through this roller coaster of a journey. It is hard, it hurts to our core, it is joyful, emotional, spiritual, loving, learning and growing.

Hug Your Babies!

PS...if there is anyone out there who fancies themselves a painter Brad could sure use the help to get the house done :).

PPS...Anastasia...where are you?

Loooong Overdue

2011-08-20T13:22:00.003-05:00

Wow...May 30th was my last update? I can't believe it has been that long. I apologize to those of you who truly care about Liviana and Giovanni and have wanted to know what was going on. Most get updates through Facebook and have been able to stay up to date. It means so much to me that people have been touched by our kiddos. We think they are pretty amazing and I always wish everyone that follows their story could meet them and see their faces, their smiles and their spirit. We really, despite the medical hurdles we face with Livi and G are so incredibly blessed with 4 beautiful, kind, compassionate, fabulous, perfect children. They keep us going, they make us smile and laugh and teach us to remember that each day is truly a gift...and that one should excitedly tackle that day at 6am :).

Wow...a lot has happened since the end of May. The last week in Milan was one of ups and downs as they told us we could go home, told us we couldn't, changed the date of return on us about 5 times, told us we had to wait longer and then finally, after I told them I absolutely had to be home by a certain date, booked our flights home for June 2nd. We arrived back in Omaha on the evening of the 2nd. We were so happy to be back in Omaha even if it was 3am to us.

We were met with unexpected obstacles coming home but thanks to good friends and strangers we were able to get past the issues and refocus ourselves on being in Omaha again and being comfortable in our own home. Doctors appointments, reestablishing my business, reconnecting with friends, Liviana's changing needs, childcare help, finances, Brad returning to work, more doctor's appointments....it was a settling, yet busy time.

I really, really wanted nothing more than for Aria and Miles to feel stable again. I can't believe how awesome and resilient they both are to be pulled out of school and dropped in a foreign city for almost 6 months. They talked about Omaha and school all the time. They made good friends in Milan but they both craved what they knew as their lives before...the parks (not graffiti covered), playing in the front yard, their beds, their stuff, their playroom, the zoo, Target, their bikes they got for Christmas and never had a chance to ride....they looked forward to so much. We saw a change in them when we got home. I don't think we realized how much being in Milan impacted them until we got home and saw them act like the Aria and Miles we knew before. The smiles on their faces meant the world to us.

Since we got home, just 2.5 short months, Liviana's decline has been dramatic. In reality, her decline while in Milan was dramatic as well but the silencing of her voice in July is so difficult and painful for all of us. I noticed shortly after we got home that she seemed to not be able to say "mommy" anymore. The last two words she could say were "Daddy" and "Ciao" and then...those too were gone. I can still hear her in my head, saying the ABC's loudly when she was instead supposed to be going to bed. I can still hear her, "Me Awesome", her "Allllright" and her "Lub You". I feel like I have this old fashioned film reel playing in my head sometimes where I see her running and playing just a year ago...less than a year ago. I feel removed from the situation sometimes. I cannot imagine a parent seeing their child going from an active, normal 2.5 year old to the physical equivalent of a 4-month-old in less than a year and then I realize that is us, that is our Liviana. I blindly do all I have to each day separating myself from the emotion and pain of it all because that is truly the only way to get it done. Letting the situation consume me mentally would render me completely useless to my family.

Towards the end of our time in Italy she had great difficulty still holding her cup to drink. We continued to have to thicken her liquids more and more while there as well. By the time we got home she could not hold her cup anymore, we had to do it for her. She was still eating well and large quantities. She has always been a lover of food. She seemed like a bottomless pit and would eat and eat and eat if allowed to. Even into the end of July she was easily eating more than Aria and Miles. We had to feed her, which we didn't mind at all. I spoke with both her Metabolic doctor and her pediatrician about not wanting to rush a g-tube if she was still doing so well eating, as I felt it was a slippery slope. They both agreed and I was grateful for their conservative approach to the issue. Towards the middle of July I scheduled a swallow study for her, as we were seeing her struggle a little more with solids, which had not ever been an issue before and it concerned me greatly. It seemed to down turn so quickly. The weekend before the scheduled study on the 28th I had numerous concerns as she was struggling more often and it was to the point that she started refusing food. Our lover of food suddenly did not want to eat anymore because she knew she was struggling too much. We had a couple of scary moments with gasping after taking a bite and I noticed she seemed to have rapidly lost her oral motor skills and ability to move her tongue as needed to move the food around. I called the doctor first and they said to take her to the ER, which we did. She was admitted on Monday, July 25th and had surgery for g-tube placement on Thursday, the 28th. The same doctor who saved her life at birth with her Diaphragmatic Hernia repair also did her g-tube surgery. He said her diaphragm looked beautiful :).

We aren't supposed to take milestone steps backwards with our kids. From the time they are born it is all about what new thing they can do, what new milestone they will meet, what progress is being made. It is difficult to take such monumental steps backwards, especially when I had such fear that this one big step backward would quickly spiral into more. I wish the people from different departments like the "feeding specialists" or the home health people were given better information on Livi's diagnosis before discussing things with us. At one point the feeding guy was showing me the cup that Livi could use and making sure she was doing okay with their thickened liquid (she could still do puree or very thick honey liquid after surgery) and he said, "as she gets better and doesn't need this anymore" and "she should get help from OT so she doesn't need the tube anymore". I had to stop him and let him know that she won't be getting better. It is such an awkward thing to have to say. The home health lady asked from their standard survey, "how long do you plan to use the feeding pump, etc....what are your goals for her getting off of them". How do I answer that? I just wish they had better information before coming in given that some children do have terminal diagnosis and won't ever be off of them until they pass.

In true Liviana fashion she was released the day after her surgery. I asked for a neurology consult before we left because I wanted to make sure that she was getting what she really needed to address her nerve and muscle related symptoms. Up until then she was still just on the drops that we were given for her in Italy. She got them as needed and some days that need was greater than others. It was decided that we would try her on Baclofen for her muscle spasms...again, another slippery slope in my mind but I want her comfortable. Seeing her in pain and crying and not sure why is extremely difficult.

I had every intention of making Liviana's feeding formula myself. Formula is great if you have no other choice but none of my kids have every had formula and I truly believe that whole foods is the best thing for her to help her thrive. Taking the steps to make her food is much, much easier said then done. First of all...I can see the doctors and nutritionist get nervous as soon as I tell them my plan. They are much more comfortable with having a nice shiny can with a label so they know exactly what she is getting each day...even if it is not made of actual food. Second, I know a lot about organic food, healthy food, whole, raw foods, vitamins, nutrients, antioxidants and all the other wonder in things like Tumeric and Spirulina. I am somewhat annoying to my family when it comes to making sure we are eating REAL foods. However, knowing all of this is just the tip of the iceberg to understanding the quantities being made at one time and the calories, fat, vitamins in each batch, the conversion of ml's to ounces to cups, etc. etc. etc. I found myself swimming in all new information. Then, the third issue was not having the necessary equipment to even make her meals. I lacked a juicer and a powerful blender. My $19 Oster just wasn't going to cut it...it didn't cut it just making smoothies for the kids.

Liviana was on formula for her "feeds" (Brad hates that word since he grew up on a farm and it means something different to him) at the hospital starting the night of surgery, on Friday and then for half of Saturday at home. Saturday afternoon I still did not have what I needed and was still pouring through the dietary information trying to find what would be best. Each time I had to start her on a feed with the formula I felt sick to my stomach. It smelled awful and she seemed to get really uncomfortable and cry powerfully 45 min to an hour after each meal. By the 5:00pm I could not do it anymore. I tried to make her something out of the fresh fruits and veggies and meat we had at home but my blender could not reduce it enough and I ended up ruining 3 bags trying to get it to run through the pump. I felt my entire body full of tension and I felt horrible that I could not give her what she needed. I left and ran to a local Nutrition store near us and found a whole food powder mix that was substantially more complete then the can of formula but had some of its own other issues. It would work perfect for a few days though while I figured out what her main formula recipes would be. It was a powder that needs to be mixed, which the pump still didn't like but I can handle beeping every 5ml that I have to reset over non-food formula going into her body. That was the first time, after the first whole food meal, that she didn't scream afterwards. Temporary success!

A wonderful client, and friend had an extra juicer she loaned me which I was very, very grateful for. It is an awesome machine...it is oddly rewarding to see the juice coming out. I have gotten organized and Liviana was promptly switched to our own recipes. They change with each batch because I do not see the point in her getting the same thing every.single.day since we don't eat like that normally. She eats far, far better than we do and probably 98% of the population. I am very happy to have a pediatrician who has a similiar belief about what is best for her nutrition wise. I am still trying to find the best options and when I get a few recipes down well I will share them on the blog for other parents...although the needs for each child is different.

Gosh...so much rambling on about food.

Since surgery Liviana does struggle more with her muscles and otherwise unknown pain. We have more tears and more times that we simply do not know what is wrong. So many MLD parents have said that anesthesia from surgery speeds up the progression of the disease and that was one of my fears for her. I can't express how difficult it is to not know what is causing her pain and her crying. There is absolutely nothing more helpless. We hold her and kiss her head ( a million times a day ) and we try different positions, making her laugh with silly songs, walking around with her...anything we can do to put the smile back on her face. Sadly, laughter sometimes causes her to stiffen up too much and it turns to tears as she can't get her stiff arms and legs to relax. She still amazes me though how she keeps smiling when she can and laughs and we still see that sense of humor we all know from her for all of these years.

Here is a photo of our beautiful girl from early July.

Since we returned from Italy we had been in back and forth e-mail conversations with the Make-A-Wish Foundation for Liviana. When we spent time thinking about what Liviana loves the most we knew it was the beach. She was so calm and at peace when she got to go to the beach in Sardegna. We had no desire to take her to Disney Land or something similar. She can't enjoy those places since she can't even ride the rides. We knew we would not put her on a plane and make her endure a flight to see the beach either. After some research in land locked Nebraska we decided that she would enjoy going to Lake McConaughy in Western Nebraska. It is a doable 5.5 hour drive that she should be able to stay comfortable during. Plans were made for us to go August 11th to August 17th. The kids were very excited and we told Liviana every single day she would be going to the beach. As expected, the first day at the water she just melted in my arms as the water hit her feet. She almost fell asleep right there hunched over on my arm. Making the trip even more special are all of the people at Lake Mac who opened up their home and their hearts to our family. The Cooley family, the people at the Martin Bay Church, the LeMoyne Senior Center, Scott and his wife from Admiral Cove Resort, the Nebraska Games and Parks and I am sure so many other people we do not even know. Thank you all for making sure this was a peaceful and enjoyable time for Liviana and our family. We also want to thank the amazing Jennifer and Kristen from MAW for all of their work for our family. We really enjoyed having you to our home and we are serious about you coming over anytime Jennifer :).

I haven't even uploaded the photos from our trip yet. I have been pretty busy with work before and after our trip but when I do I will post some here for everyone to see. Our drive home was easier than our drive there. The entire 5.5 hour drive Liviana never made a single solitary peep. She just sat and smiled, listened to her crazy siblings and watched TV. I would look back at her and talk to her as I got her "meal" ready and she would just smile. She is such an absolute angel who doesn't deserve this...no child deserves this.

Giovanni is amazing! He is a rambunctious, normal 20 month old. Liviana was a rambunctious, normal 20 month old too though. I look at him with such hope and fear all rolled into one. I cannot stand the though of knowing he may face the same thing Liviana faces. He is so happy and entertaining. He makes me laugh every single hour of the day. He LOVES, LOVES, LOVES Livana to death. He is so protective and loving towards her. He loves giving her kisses, he gives her her bear when it falls, he used to even take her her cup when she was still using it and give her a drink. When we were at Lake Mac, Livi's cousin Bella, who is 2, came walking towards her in her seat. She wasn't going to do anything to her, just curious, but Giovanni came flying in front of Bella like lightening, sat down between her and Liviana and put his whole arm across Livi and made squealing, "back off" sounds towards Bella if she moved. I stood there and watched in loving awe. It truly moved me. He repeated this again about an hour later when he didn't like how close Bella was to his sister. Bless his sweet heart. I remember crying in our pediatrician's office shortly after Livi's diagnosis because she loved her brother so much and I was so afraid because of this disease he would never really know her since he was so young. I see now an absolutely amazing, powerful bond that I could not even have imagined between him and his sister. We are so blessed beyond words. I hope at this age he is able to hold her in his memory forever.

I was scheduled to return to Italy on August 24th for 2 weeks with Giovanni. Given Liviana's daily increasing needs and how frighteningly rapidly things go downhill for her I absolutely cannot fathom the idea of leaving her. It almost gives me a panic attack. In addition, the visit would require both Brad and I being off work again for 2 weeks, something we simply cannot afford to do given all the recent time off for her hospitalization, appointments, etc. This visit was just for testing. Giovanni will not receive any more "treatment". They were going to do an mri, motor skill evaluation (which was scheduled for less than 24 hours after our arrival), abdominal ultrasound, hand x-ray...follow up testing to everything that was done prior to treatment. There was also blood tests and a bone marrow aspirate that would be done during the MRI. Given it is 2011 I know that the testing can be done here without problem. I also know that they have come to the US to transport blood and other samples back before for other families. Last word was that they were refusing the request for me to not come but I simply am not going ( I would be planned to leave this Wednesday). It is far from the best interest of my children and family and that is and always has been my priority. We don't intend to exit the study so we are trying to make accommodations so they still have the study data they need without a 2 week trip to Italy to get it.

We have met some absolutely amazing people through all of this. There are angels on earth all around. I could not even begin to list every single name out there who have touched us all and helped us through these difficult times; Angie Lauritsen, Annie Pensick, Jennifer Morais, Danielle Holtzman, Tonya Cantu, Katherine Elizabeth, Lina Sereno, Michelle and Cristiano, Erica Lomnes, Koski Family, Jaclyn Waldow, Nett Hutfless, Jen Pinkerton, Jodi Haselden, Veronica Daehn, Kristen Treat, Wendy Thamm, Joy Sakalosky, Shannon Wallace, Mathiesen Family, Lakin family, Sara Todd, Angie's neighbor ( I am terrible with names)...I KNOW there are a ton more...people who send one little message to me and make me smile and help me through a rough moment. I appreciate you ALL so much. It is extremely hard living in a city and state without a single family member. Coming home from Italy and knowing we did not have family to come home to was softened by having good friends who had our back and were there to make sure we did not fall. Good friends are truly invaluable.

In times like this we also unfortunately see the not so good in people. Things could not be simpler with my family. We really are very simple people, leading simple lives day to day, doing it all for the kiddos. I have heard the most horrific words said about my daughter, devaluing her life...absolutely horrific. I don't have anger. Anger is a useless emotion for me right now. I truly feel sorry for these people and those who stand behind them. They must have such deep sadness and be seeking something so desperately that they try to find it in such sad, sick ways. I read a quote months ago that said, "A taste of righteousness can be easily perverted into an overweening sense of self-righteousness and judgmentalism". I have seen self-righteousness in many disguises. I have learned so much and gained insight into myself through others. I have never been one to ever involve myself in anything dramatic and I have gone even further from that through all of this. I am extremely quick to shut people out if they create chaos for me mentally in my life. I have to be able to focus on my children and outside sources drama when I really am going about a difficult day to day reality are not worth a single moment of my attention. It is really a great and freeing feeling to eliminate unnecessary stress from ones life.

Thank you to Jennifer Morais for organizing another auction for our family on her own. It was supposed to start this past Friday but someone reported the Liviana and Giovanni's Journey Facebook page and it was shut down for a few days. The auction will be held instead on Friday, August 26th. You can visit the page HERE.

I am thrilled, after talking to Dean Suhr from the MLD Foundation that at my request, they will be able to start a fund, within the MLD Foundation for families that choose to seek treatment for their children away from their homes. We know the financial burden these families face leaving their jobs for extended periods of time. The fund will not be limited to families seeking treatment outside the US only. Dean and his wife are traveling and preparing for the MLD Family conference in England right now but when they return they plan to open a page specifically for people to donate. We will be giving 10% of our auction donations to the fund to begin the assistance for other families. We are so happy to do this for others.

I do have a house and kiddos that are in need of my attention. I am running out of time on my daily task list and this post has of course gotten long. I still have much more to share and plan to post again soon...no promises though because I can't predict our days around here.

The kitchen is calling my name, G wants his mama, I need to check on Livi's meal and Miles is "hungry" (always!).

HUG YOUR BABIES!

Mountain Climbing

2011-05-30T14:34:00.008-05:00

I know that it has been a long time since my last update. I apologize, as I know there are many people who have been following our story and have been wondering how the kids were doing. All is well. Giovanni is indeed a rock star and Liviana is still smiling and laughing.

It has been a busy month of May, which is in part why I had not gotten a blog post done. Now I sit here with a packed full month of news to share. I am sure this will turn into a novel quickly.

Mountain climbing....I have felt like we have been climbing a mountain since November 17th when we got Liviana's diagnosis of Leukodystrophy. It hasn't been a casual climb either but rather the feeling of a moving mountain that forces you to keep going to exhaustion...kind of like a treadmill that you can't get off of set to the highest incline. You can't go back down to where things were normal, level and calm and you can't take a break because the reality of that mountain is right there, under your feet, forcing you to keep going. Every once in a while, we will come to a brief plateau that allows us to take a deep breath and even enjoy the view. Those moments have come at times when Giovanni got out of the hospital, when I snuggled in bed between Liviana and G and night, when Aria sat and held Livi's hand and talked to her...those have been the moments where the view was enjoyable and not the exhausting, scary, steep mountain. Once May hit we found ourselves with more of those enjoyable plateaus. It was those moments that we found ourselves able to take those breaks and breaths on the plateau for longer than we have since November...enjoying the view, enjoying the smiles on our kids faces. We are so thankful for wonderful friends we have met here in Milano who have played such a huge role in this last month of smiles and laughter.

In early May, our friends Michelle and Cristiano invited us to the mountains for an afternoon. We have seen the Alps from the train on clear days (there are not many). I found that those clear days of mountain views was what kept me going on those back and forth hospital trips. We were eager to actually see the views up close and get the kids out of Milan. Many people would be surprised to know that the air quality in Milan is quite horrific. Black film accumulates on balconies, clothes hung outside too long need to be washed again, kids have "smog cough" and we have all suffered regular headaches. The prospect of getting out of Milan and breathing fresh air sounded fabulous! We were worried about how Liviana would handle the hour long car travel in a car seat. Before we left Omaha she would scream in the carseat. It was uncomfortable on her legs and body. To our surprise she was nothing but giant smiles and laughter our entire trip up and back. She was snug between Aria and Miles in the back seat of the car we road in. They all had so much fun laughing together. It really brought me so much joy to hear. There were many tunnels next to and under the mountain on our drive and Liviana loved the tunnels. She would squeal...literally a squeal...the cutest thing you ever heard when we would go in one. On the drive back Aria and Miles both slept but Livi stayed awake enjoying the ride and the tunnels. After a while she said, "Daddy". I said, "Sweetie, Daddy is in the car in front of us". So, louder she called out to him..."Daaaadddddyyy" as if he could hear her. It was so cute. We don't hear her voice as often anymore as she loses her ability to speak so those times we do rings so beautifully in our ears. She seemed to absolutely love the mountain air and experience. The other kids did as well. Miles, in true Miles fashion took his time on the trails. I stayed behind with him as he asked a million questions, walked slowly, picked up rocks along the way for my pockets :) and found his perfect walking stick. Aria thought everything was beautiful and loved having her picture taken with the snow covered mountain top behind her. Giovanni was as always, smiling and being adorable. He was at this point, just starting to smile for me when I took photos like a true model :).

The day was really fabulous and we are so thankful to a great family for taking us there. The 2nd week of May another great friend, Erica, we met here in Milan invited us to the amazingly beautiful Island of Sardegna. She hosts a conference for Immunologists there every year and had the rooms booked out already so our stay and food would be covered. It sounded like an absolute dream come true. Ever since we got here I have been trying to find somewhere we could take the kids out of the graffiti covered city. This has been a hard experience for them, asking to go home to Omaha weekly, missing school and their friends,etc. I did not want this whole trip to be all the uphill mountain climbing for them either. I specifically hunted for a lake or something similar so Livi could soak up the sun like we had done on the balcony during the early spring. I knew she would love the beach and I desperately wanted her to put her toes in the sand while she could still see, feel and experience it all. I priced our travel to the island and came up with a pretty steep total once converted to US dollars. I told everyone we would not be able to swing it. A day later, Erica e-mailed me saying that she had long needed professional photos taken at the conference for the website and brochures and she would take care of our travel in exchange for me taking photos at the conference. I was stunned, overjoyed, grateful and so, so happy for the kids. To be able to combine the vacation experience with working had me very excited since I miss working so much. So, we planned our 10 day trip to Sardegna free of charge. We actually saved money going on vacation since we did not have our regular grocery bill during that time and other expenses. How many people can say the saved money by going on vacation? We left for Sardegna early on May 14 and returned home late on the 23rd. It was an absolutely amazing, beautiful, once in a lifetime experience and I truly cannot thank Erica enough for offering such an unforgettable time to our family, particularly my kids. We were extra happy that our other friends, Michelle and Cristiano and their son joined us on the Island as well. If you have not googled Sardegna yet go do it...we were at Capo Caccia...GORGEOUS.

In the time of our travel planning, Giovanni was doing awesome. He has remained healthy, with great counts, infection free and happy (accept on the hospital visit days when he revolts loudly). Liviana had been having her good days and bad days. I had mentioned how the bad days weighed on me so. I spoke with the neurologist here and they suggested putting her on a very light dose of a valium type drug. I had hoped for a straight muscle relaxant like Baclofen for her and took time to discuss the issue with them and Brad. I did not want something that would effect her mind...leaving her foggy during the day. They said the dose was VERY small...just a drop and that we could use it on an as needed basis. It did not have to be every day. The doctor noted that Livi does not have rigidity or spacisity and that she can relax her legs and body but because of all of the errant nerve impulses and everything else going on in her body she stays very tense and tight. In this case, their suggested prescribed drug would be good for her state of mind and relaxing. I just worried about a slippery slope. Once medication starts it leads to more, the body reacts, changes and then more drugs join the list. That was my fear. She has really done great without anything but I also want her to be comfortable and needless pain is never good of course. In the end I got the prescription...which by the way cost 1.89 Euro and we have used it sparingly...as needed on days she seems uncomfortable. It has been days since she last had a drop and they were rare before that. She is doing great. It is nice to have it though to help her through those days.

While we were in Sardegna, enjoying a day at the beach Liviana did have her first seizure. This was a quick slap back to reality for us. It was not a "bad" seizure...not grand mal. It was a reaction to a couple of bites of ice cream and the sudden cold when her body was warm/hot. It really was a big dose of reality. Seizures are a reality for MLD and it just reminded us what is going on in her little body. It really hit us hard mentally. We will get her an EEG when we get home if we thing it is necessary. She would not like the EEG process and since the seizures are really not unexpected with MLD I don't want to put her through it if it doesn't tell us something we don't already know.

Livi absolutely LOVED, LOVED the beach. All smiles, all happiness, all joy. She was so peaceful when we were there (every.single.day). She loved the sun, laughed absolutely hysterically when she sat at the shoreline with Brad or I and even had special little holes dug in the sand by Tarah so she could sit up and watch what her brothers and sister were doing. Giovanni was absolutely adorable at the beach. He loved playing in the sand with the bucket and dumping water out and quickly asking us to refill his bucket. He and Liviana were both in the sun a fraction of the time Aria and Miles were ( they rarely left the sun accept to go to bed) and they are both so, so dark. Aria and Miles got tan too but Giovanni and Livi are "Chocolate and Bronze" as the doctors called them upon our return. Aria is destined to live by the beach. The water was quite chilly but she was in it all the time. She loved every single second and I really can see her living by the sea someday. Miles was too adorable and made a friend in one of the Scuba (Sub) instructors who bandaged him up (twice) when he fell on the path to the beach. Miles would say his favorite part was the boat ride we took...it was AMAZING. I really cannot say enough how absolutely amazing this experience was for the kids and us. It is a place we would never have a chance to go and see and to have the chance on the tail end of this difficult trip to Milan is that big plateau we REALLY, really needed more than anyone could ever know. Oh...and I rocked the conference photo taking too :).

I took a TON of photographs while we were there but I haven't even had a chance to go through them all yet. I had two evenings of mini-sessions when we returned from Sardegna and I have been feverishly processing, processing so I can get everything done before we leave. Leave....yes, I said LEAVE.

I so wish I had a set flight plan to share with everyone but I am taking a really deep breath and biting my tongue and will simply say that the hospital has not finalized the plans yet. However, I can tell you that it will be this Thursday, Friday or Saturday that we return home to Omaha in the evening. I WILL get the final itinerary tomorrow during our visit with Giovanni (his FINAL blood draw this trip). He will go home without any indications or restrictions. He is so strong. We are anxious to see our Dr at home, who I have been told has contacted the doctors here to check on us. I suspect my lack of blog posting didn't help inform him of what was going on....sorry Dr. R and we will see you soon :)...I have a million questions for you.

I have a lot more to discuss about Giovanni's treatment, my fears, the potential outcomes, new people we have met here and a ton more. Our computer connection stinks and I have jumped through hoops tonight just to open my e-mail so my patience is frazzled and it is late so I will post everything else in another blog post. I am no longer making promises that I will post in X number of days though. If you do notice that I have not in a while then you know it one of those times we are taking some breaths on those plateaus away from the mountain climbing :). I will be posting more on Facebook though...I have done a poor job of that lately too. Something had to go for my sanity for a while and it ended up being the computer. I feel sane again though thanks to the beach air and idea of American soil in a few days.

Here are a very few photos I have processed so far. The beach and sand is really that color. The one of Aria and Miles is at Stintino Beach...google that :). My connection here is so bad that I can't even upload photos to Flickr right now so these are junky blogger uploads...sorry about the quality. When I get flickr working I will upload them in better quality and size. I have a ton to go through after I process the rest of my work related photos. I am thrilled that there is a family photo in the bunch too. I love my babies so much!

Hug Your Babies!

Amy

Now aren't those better than hospital pictures :).

Renewing, Smiling, Laughing, Loving

2011-04-25T04:02:00.007-05:00

After what was a really rough week for me, I have found myself very refreshed and renewed and ready to move on past the issues that took me away from where my focus should be, and always has been.

I am really a private person. The reason for starting Liviana's Journey in late 2007 was to keep family and friends up to date on what was going on with Liviana since we were moving out of state for her medical care and birth. It has ended up being a resource and a help to other CDH parents and now MLD parents. Completely unexpectedly it has touched many, many other people. I always insist I am not doing anything that any other parent would not do when faced with the same thing with their children. I am not special...I am just a mom.

I am actually an introvert, which would surprise a lot of people. When I was in graduate school I had to take many personality assessments, since I needed to understand the instruments we may use. I was always 50/50 Introvert/Extrovert. I think that was a result of where I was in my life at the time that I even was 50/50. I needed some extroversion to be attending and presenting at conferences, teaching classes and working in a team with other people. I have no doubt if I took the same assessments right now I would have shifted clearly to introvert, which is my natural comfort area. That does not mean I do not like people, or socializing or groups. It simply means that I don't get my energy from being with other people but rather can get that energy from being alone and solitary. I think little people are excluded...they give me energy no matter what.

So, when all of this drama happened I really wanted to just fold it all up. I will always do what I am doing, the way I am doing it for my children whether everyone can read about it or not. I just questioned whether I needed to sharing so much with everyone since it opens you up to so much judgement, scrutiny and really, just plain old gossip. I don't think anyone ever wants to be talked about in a negative and untrue light but in a situation where all you are doing is going day to day hanging onto what you have with your babies it makes it feel like you are being kicked while you are down. I never even wanted our story to be made "public". I never sought out news stories or anything else....it makes me really uncomfortable. Good friends did what they could for us contacting those people because I never, ever would have and they were thinking more rationally about our needs than I was at the time. I appreciate all of them more than words could ever say and know they did what was best for us and our family...I don't ever want that to be misunderstood.

I am moving on now and going to return to what is important and what I have been focused on since the beginning.

I was so blessed to have met a local Milan woman, an American, married to an Italian man. We met on the expat board a couple of week ago when I was looking for help with Tarah's Visa issue. We got back in touch this weekend and they were so kind to invite all 7 of us over to her In-Laws house for Easter dinner. We were all like little kids, all giddy and excited that we would be going somewhere to be with other people for a traditional, Italian Easter. Michelle and her husband have a 3 year old son and the kids were so excited to have someone else to play with. It was really a wonderful, relaxing day focused on the family. It was something we all really, really needed. We are so grateful for the invite and for new friends. Almost all my socializing for the last 3 months has been with people in hospital masks. Even us introverts need to have a chance to spend time with other people. Thank you, thank you, thank you Michelle, Cristiano and family. You have given us so much more than you even know.

The "Easter Bunny" (AKA, Brad hunched over with a bad back) hid eggs in the courtyard early yesterday morning and the kids headed out for an egg hunt, complete with whatever basket like item they could find to carry their stash. I am sure the neighbors wondered what in the world we were doing out there. It reminded me of last years hunt and Liviana running around trying to collect eggs. It is hard to not reflect on the same time last year when everything was "normal". This year brought new, special joy though with all four together and lots and lots of smiles all around. Here are a few photos. I also have photos from our Easter dinner I will get posted soon too.

Today is still holiday and feels like a Sunday around here. It is referred to as Pasquette. The courtyard is a buzz of activity and you can smell BBQ grills going...a heavenly smell to us. It is going to be a good day.

Giovanni has a regular appointment tomorrow to check blood counts and Liviana will have a neurological evaluation because of her increasing muscle spasms. I will update when I can.

The Reality of Life in Milan

2011-04-22T05:23:00.003-05:00

I think when most people think of Italy, and Milan, they get a romanticized vision of everything. Cobblestone streets, gorgeous architecture, stunning scenery, blue skies, shops galore, street side cafe's and walking hand in hand. It all sounds lovely and if you find a place like that let me know, because I could use a break.

That is far from the reality here and financially, I don't think anybody, unless they have had to up and MOVE (not visit, not travel through, not vacation) to a foreign country with 4 kids and 3 adults can begin to make assumptions about what it "should" be like for us here. In addition to the overwhelming fear of our daily lives when it comes to our children, we have had to navigate life in another country, where we don't know the language, where life simply does not resemble anything you know as life in Midwest America...or America at all. The US Dollar is barely worth the paper it is printed on here. And, if you did not realize, Milan is the 15th most expensive city for expats in the world. To put that in perspective...I know many in the midwest who would cringe if they had to move to New York City because of cost of living. New York City is 27th on the list.

I am not one to ever post much about what ISN'T great if it isn't necessary, like the trials faced with Giovanni's treatment. I don't like to complain, I try to focus on the positive. I didn't post about my locker being gone through at the hospital and then left unlocked for all of my stuff to be taken overnight. I did not post about the people in the building reporting us for not recycling properly because it was never explained to us that you need to separate EVERYTHING...even food or even where we were supposed to take it each day. I did not post about navigating around piles of dog poop on the sidewalks because few people pick it up here, or the big fight at the train station that was because of us and our stroller trying to get on the hospital train. The locals all came to our defense against the much disliked "transit man" who came out of his booth to confront them all when our train arrived (this was after a shouting match on the train with him over the loud speaker).

I know that those posts would make for a good read once in a while but unless I have a big reason to address something negative...a passion, a defense of my family, a concern for someone else...I won't usually focus much on that stuff with the public. Right now is one of those times I feel, as my family has been misrepresented and someone out there thinks that we are doing things here and living it up on donations and nothing could be farther from the truth. And, this again makes Mama Bear come out.

Before I get into the "exciting" details of our time here in Milan I did want to point out that we are currently waiting on a fraud investigation on our account. There is a charge for $1000 some odd dollars that is not ours. I do not know how long to expect the investigation to go on but we certainly hope that it will be resolved soon. We fell victims to this charge (which appeared once before and then disappeared) and I acted as quickly as possible with not way of actually phoning Wells Fargo from here to get the next steps to file a report. The report was filed by Jen Hendrickson in Omaha (who is also on the account) and we hope for a quick resolution for all of us affected by the charge.

Ok...picture this. We are 7 people, 4 kids and 3 adults, living in a 2 bedroom flat. Homes and apartments in America are quite palatial compared to homes in Milan. Except for the bathrooms here, things are quite small (they like big bathrooms). Those 7 people, have just 4 beds and my 6'9 husband is sleeping on a 6'0 cot (that he insists is shaped like a banana). This is likely the reason he has had his back out for the last week and limps around like Grandpa.. I feel bad for him but we tried to find different configurations for sleeping for a while and that was what worked best for everyone. Being the loving wife that I am, I reminded him that I slept in a baby crib for 60 days so he needed to learn to love his banana cot.

We moved to this flat, in a village outside of the city in Mid-February after living in a hotel with 7 people for a month. I say we, but in reality, it was Brad, Tarah, Aria, Miles and Liviana because I was in "the box" for 6 straight days as Giovanni started his chemotherapy. Remember when you were getting ready to start college and your mom took you to Target or Wal-mart to get everything for your room. All you had to start with was a bed, desk and very basic furniture items. That is pretty much what we faced except it is for 7 people. We needed towels, sheets, pillows, comforters, kitchen items like dish towels, bowels, cups, glasses, trash cans, brooms, mops, cleaning supplies, toiletries beyond the 3 oz. containers we had, plug converters, hangers, blankets and other small miscellaneous things. There were a few things in the kitchen, which helped but I had to get inventive when I made Lasagna last week when I realized we did not have a casserole type dish. With each day you realize more things you miss and need from home. We take for granted having a home full of things when we need them. The power has gone out several times at night...where are the candles and lighter until it is restored. We still don't even have a rack to hang our laundry that doesn't take 2 days for it to dry. That can back things up with 7 people and 4 kids who go through clothes quicker than we do. There aren't dryers here so people hang things outside. We will probably find one when it is close to time for us to leave. We have lightbulbs burned out in the flat and have yet to figure out where to buy them to match. There isn't an ACE hardware on the corner and what they have at the market isn't even remotely close to the same kind.

Being outside of Milan and not in the hotel anymore means that we have to take the train to the hospital. We can see the top of the hospital from our village train station but it is a 1/2 hour to 45 minute train ride one-way depending on the time of day and a 1 mile walk from our flat to the train station. In the month of March we turned in over 240Euro in train tickets for reimbursement and that was not all of them, as I had some in my bag as well...I would say with all of them it was probably slightly over 300Euro The hospital has not reimbursed us for those. Each time I left the hospital I waited on trains, switched trains and made my 1 mile walk back to the flat. For about 2 weeks those walks were in the rain. I know, I know..."I walked up hill in the snow when I was a kid"...my point is...that is life without a nice vehicle to jump into and go home.

Food....ahhh food. This is where most of all of our expenses go. I would say easily...93% of finances is on feeding all of us. Forget all about bulk shopping, going to the store every other week of even once a week. The culture here around grocery shopping is very far from America. Refrigerators are small and freezers even smaller. Meat expires usually the day you are buying it, as they don't "stock up" on food here to have for the week. You buy for each day or each two days. Our kids go through 7 -9 boxes of cereal a WEEK and 5 gallons of milk. When I first went to the market when we were living in the hotel I thought...WOW...this is cheap. It took me getting back and realizing the horror of the currency exchange to know that it is not cheap for us and when were at the hotel I was stocking a hotel sized tiny fridge. I added up in 14 days at the beginning of March we spent 320.91 Euro on groceries. That comes out to $469.00 US dollars. See....that hurts! There really is no choice though. I am the master of creative cooking with what I have but that is easier when you are in an established kitchen with a variety of items for random, not everyday use. I don't have the luxury of going to the store and getting all of those useful items. Not only would it not make sense to fully stock a kitchen we will be leaving in a little over a month but we have to walk to market. It is about 1/2 a mile away and we can only buy what we can pull home in our pull cart or carry. Another reason we have to go each day or every other day.

The grocery market is also closed 3 hours during the day, each day and closes for the night at 7pm and is not open on Sunday. When were still in the hotel we ran out of diapers on Sunday and had not learned the Italian system yet so Brad had to take a taxi 45 minutes away to the one open Sunday market for diapers. Again...don't take for granted being able to get whatever you want, when you want it in America.

We are reimbursed by the hospital for $500. That is all! Few people realize that and some that still do think that we still should be fine on that I guess. When we moved further away from the hospital we added the train expense that cuts into our food money even more. We have to wait and wait and wait on reimbursements and when we do get them they may or may not be correct....so we wait some more. We are currently waiting and it is bank holiday time because of Easter so no office workers from Thursday to Monday.

So..what if we want to head out and about. After all, we have yanked the kids out of school..which they loved and we want them to get something enriching out of this different cultural experience. Surely we are not expected to keep them in the flat all the time. We mostly, probably 98% of the time head out in the village to the local parks and "exploring" as Tarah and the kids call it. We have a few times, but mostly before Giovanni went into the hospital gone into the city to check things out and show the kids the sights. The last few times I came home when Giovanni was in the hospital for our day visits Brad and I took the kids down to some different museums, a natural food store I had hunted down for some non-toxic cleaner (I make no apologies for that) and another time to an open air market to find them some summer clothes (that was a MADHOUSE). Each time we go somewhere it is an 1.5 hour train experience ONE WAY to get there from the time we leave the house from the time we arrive at our destination. Each time we have gone out as a group, we know we will have to eat while we are out. We are far from home, out for hours and no matter what will run into a meal time with cranky, hungry kids and frankly us too after walking and walking and walking in the heat and sun. You may think...why can't you bring food with you? Well, in America, that would work great. Get a cooler (haven't seen one of those here), get some ice (this is Europe, they don't use or sell ice) and pack lunches. I am not sure the people crammed onto the train with us (so crammed we have had to let them go by because we could not all fit, let alone with a stroller) would appreciate a big cooler even if they did sell them and use them here along with the 4 kids, 3 adults and a stroller. I guess we could get ice trays...right?...haven't seen those either and the amount of trays it would take would not fit in our tiny freezer that is divided into drawers. So...we stop at a pizzeria to feed the hungry troops. The prices seem great and cheap but then we realize again the American dollar is the crapper and they don't seem so great anymore. Although...I will admit the quality of food beats the US anytime.

We found out on January 7th that we were indeed accepted to come to Milan and they wanted us here on the 12th. It was an absolute frenzy. I was trying to wrap things up with my business, Aria was in school and we had to ALL go to Minneapolis to get our passports plus we had company from out of state with us that weekend, two days before we left. Packing for 5 months happened the day and night before we left. One checked back per person for 5 months and two seasons. I could have done a better job packing. I managed to pack myself one pair of boots and I wore another pair of boots for the trip...not good thinking. Aria had two pairs of pants (one she has outgrown) because she is a skirt/dress girl plus she wears uniforms during the day. Miles has outgrown two of his pairs of jeans since we arrived, one of them were bought in December and several of his shirts are now cropped tops. They have all grown in 4 months. Liviana's belly is usually hanging out because her shirts are too small and they are all long sleeved. Giovanni..well, he is a giant for his age and most of his pants are high waters. None of the kids have shorts or summer clothes, which is what season we are in here and it feels like it.

I hate that I have to feel guilty for trying to keep my kids clothed and not sweating. I would have to do the same thing if I were at home though. They would need shoes because their summer shoes from last year don't fit them anymore, they would still have outgrown their clothes. I do have clothes for Giovanni and Liviana at home from their siblings outgrown stacks but in those 5 days we had to get ready to leave I failed to remember to get them out and go through them for the season change and if I had it would have put us over our bag limit and cost us an arm and a leg at the airport. I am not one to buy things for myself and what I have bought has been from cheap street markets (summer tops for 8 Euro) or from knock off stores for cheapo. They were just to keep me out of sweaters during those walks in the sun and warm weather and...not to throw Tarah under the bus (she knows I love her) but her laundry skills have turned many of my clothes different colors and two things are now Aria's because they shrunk into tiny tops. Love you Tarah.

Let's see....have I bored you enough? We are boring...we aren't living it up. Brad and I have not spent time alone since early February except for a few walks to the market in the last week. We don't "go out", we don't do fun things accept with and for the kids. If anyone doubts this they can ask our babysitter. About 4 times a week we walk over to the gelato place with the kids. That is one thing that IS cheaper. We get them all a cone or cup of gelato for about 7 Euro. It is double that at home at the e-creamery by our house. They enjoy the simple things and that is pretty much all we have done with them.

I wish it was all more exciting and I wish we were not here for the reasons we are. We have put Giovanni through a life changing experience for more than one reason, we have watched Liviana decline, yet still smile and we have watched Aria and Miles miss home so much that they have stood at the train station in front of a ton of people and yelled, "Train to Omaha Please"....it was embarrassing but we all agreed with them.

We don't want to be here, we don't even want to ever come back here but we know we have to. We have not partied accept Valentines day with homemade signs, Brad's birthday with homemade signs and the day Giovanni came home. We have spent money on things we mostly needed for the kids, mostly food and a few other things....I have stacks and stacks of receipts if anyone really is THAT bored.

We have photos to take today so I must run. I spotted an awesome spot in town while were on a little free "train" ride during a festival last weekend. Liviana is having an AWESOME day and those are the things I should really be focusing on. See...this is why I don't like to focus on all these details of the reality of our life here. The kids are so, so much more important and it is unfortunate that my attention has been taken away from them to deal with too many questioning people. It is an open book. We save almost all of our receipts for anyone bored enough to go through them when we get home.

Enjoy your weekend. Buona Pasqua!

Hug Your Babies!

Reflecting

2011-04-21T12:27:00.005-05:00

These last couple of days have been a challenge for Liviana. I knew these days would begin soon...but I wasn't ready. Yesterday, most of the day she could not get comfortable at all and cried and whimpered on and off most of the day. She would have jerking, flailing motions throughout her whole body. We realized they were muscle spasms and they have been increasing. It is heartbreaking to watch. We try to keep her comfortable and I held her much of the day and even her sunbathing out on the balcony did not make her happy...it is usually a favorite of hers. I attempted twice to give her some pain reliever and it was a very challenging experience with LOTS of tears.

There have been lots of conversations where we have been told that a g-tube will be the best decision we could make. Liviana LOVES to eat. She makes requests, she devours almost everything you put in front of her. It is one of the last things she loves so much and she can still do (with some assistance). I did not want to take that from her. I realize though that given the increasing pain she is having with muscular and nerve issues and the difficulty getting medication into her that we may need to consider the option but still allow her to eat as she pleases daily by mouth. Sending her into surgery is scary. Her body seems so fragile these days and I don't want her to be in any more pain than the damn MLD is already causing her. We will likely wait until we get back to the states, which is promised to us to be the end of May. We will see though if that decision needs to change. I brought her magnesium supplement with me from the states (good thing since you can't get supplements here) and she chugged her water today with it added and we all can see a much calmer little body. Let's hope this can help her until we can get home.

I mentioned to someone on the MLD board that I feel like her Congenital Diaphragmatic Hernia was one big, "Ha, ha, Gotcha". I remember this moment so clearly.

This was the first time I held Liviana on her 14th day of life. I remember tears falling down my cheek onto her head as I thanked God for getting us to that point and for allowing us to keep her in our lives with our family. After carrying her for 18 weeks of the pregnancy, not knowing if she would live, this moment was took my breathe away but made me hold it in at the same time, so as not to forget the feeling of the experience.

It is hard to wrap my head around going through that, knowing she survived, thrived and looking in that face with thanks each day and then having this nasty, horrific, MLD start slowly taking her from us. An insightful woman on the MLD forum, named Susan said that maybe Liviana survived to save Giovanni. So true...and I will hang onto that.

This afternoon she has had a better few hours. She enjoyed her sunbathing on the balcony, devoured 3 pieces of pizza and has not had as many spasm issues though they are still present.

She had a nice bath which I think helped too. I wanted to take her somewhere to put her toes in the sand, water and feel the sun but I don't think that will happen. I hope when it does she can still see and hear the water and know she is someplace special.

Buona Notte

Hug Your Babies!

Amy

Happy Dance at the Casa

2011-04-18T05:44:00.002-05:00

I am so glad to not have to number the days anymore :). On Day 60 (last Tuesday), Giovanni was released from the hospital and came home to laughter, smiles, hugs and joy. He was slightly overwhelmed and tired since he refused to nap that morning amidst all the bag packing in the room. I feel bad that I have not posted since then but I have really been enjoying life with my 4 babies faces all around me (ok, 6 if you count Brad and Tarah). The happiness of having all my kidlets together, seeing Giovanni playing with his brother and sisters, making dinner for the family, not having to leave and head for the hospital at night and just smiling and laughing have kept me busy. I really felt like I had won the happiness lottery when we walked in the door.

Prior to coming home we worried about Giovanni having to relearn walking. He had 5 or so days in the hospital prior to leaving where he as able to walk around in the room and get used to it all again. He had spent the last 60 days in a soft crib walking back and forth and to use Tarah's analogy...it is like being on a trampoline for 60 days and then getting off and trying to walk on the hard ground. He was a little unsteady but really, has impressed me with how quickly he got right back to it. Since coming home I have noticed he has a noticeable hyperextension in his right leg that was not noticeable before his hospitalization. This makes me very anxious since the leg issues are one of the first thing we noticed about Liviana. It is really much too early for him to have onset so I am unsure if this is related to MLD, the hospitalization, normal, or what. He has bi-weekly appointments and the next time he sees the neurologist I plan to ask about his legs.

Giovanni seems to have a special attachment to Liviana. He saw her photo on the desktop of the computer at the hospital often and would always point and chat with her. When he came home and started exploring the room one of the first things he did was bring a balloon over to Liviana. That night he brought things over to her on the couch. I always told Liviana when I was pregnant with Giovanni that she would soon have a special buddy. Aria and Miles are so close (despite Miles being closer in age to Liviana) and she was often my playmate while Aria and Miles played. They share a bond that goes beyond what any of us can see and it seems to me sometimes that they know this as well.

The first night home I got in bed, snuggled between Liviana and Giovanni. It brought me joy and a fleeting moment of peace that I relished. I lost that complete feeling of peace on November 17th when we were told Liviana had Leukodystrophy. I know I will never have that feeling of taking a deep breath and feeling all stress and worry wash away...that complete peace feeling. Even when things are great, smiling, laughter I always carry with me, in my mind, the knowledge of what we are facing and what the future holds for our babies. With Giovanni it is an anxiety that hangs over me as I wait for signs to not show up, maybe show up, show up later...who knows. The uncertainty combined with the certainty of MLD is all so ambiguous.

Giovanni had been having a great week and Saturday night he had a very, very restless sleep followed by vomiting at about 4am. I got up with him and held him in my arms as he slept in little 30 minute stretches before getting restless again and throwing up 3 more times with the last being around 8am. After that time he got up, started walking around,playing, wanting to eat and acted like nothing had ever happened. I went from total fear of what was wrong with him, did he get some errant bacteria from some food, did he have a virus, etc. to watching him play like normal and realizing it was a very isolated situation. I contacted the doctors in the morning, just in case and since he was acting fine and never had a fever they took the watch and see approach, which made sense to me. As of today he has been completely fine and never got sick again.

Thursday we took Giovanni for his first outpatient appointment. He had a blood draw and the general physical check. His counts showed that his neutrophils were 1500, which is awesome. We were all very pleased!

On Friday we had the joy (insert sarcasm)of going to the immigration office at the police station to file Permesso Di Soggiorno (Permission to Stay) paperwork since our 90 days had expired. We knew nothing of this until we were leaving the hospital on Tuesday and were told to go by the secretary's office first. The told us the paperwork we needed (photos, passports, tax stamps) and that they had made an appointment with the head secretary since it is usually an all day wait and that was not a good place for Giovanni to spend the day (we all had to be present). We also were told that Tarah would likely not be granted permission to stay since they did not understand/recognize the need for her to be here. It was very clear to us that they already knew that a visa for her would not happen when they told us not to even bother getting a tax stamp for her (we did anyway).

At the office we were met by Cruella de Ville who clearly needed an injection of happiness in her life. We sat at her desk as she shuffled through our paperwork demanding things we knew had been faxed and tossing Tarah's paperwork aside. This was after the kids walked in when she said she was ready and she barked, "No Children" and they were sent back out to the hall. I am not sure at this point why we had to haul them all down there then. In the end, Tarah was not given a Permesso Di Soggiorno and is essentially here now illegally. We are NOT happy and Brad went to the hospital this morning to discuss the issue (among other things like not getting all of our reimbursements) and find out what they intend to do about it since they never told us this was an issue and it is a HUGE issue to us. In the mean time, Brad, the kids and I are officially immigrants and Tarah must steer clear of the Polizia for fear of deportation. We will try to keep her in line :). It is not like we are here on a vacation....they have us on a medical visa so they know the situation. Very frustrating.

The weather has been beautiful here. We have been very blessed with sun and great temperatures pretty much non-stop. When there is rain it usually gets cloudy, rains very lightly and then the sun quickly returns. Our first evening home, as we sat to dinner with the large patio doors open, some rumbles of thunder could be heard and the wind (which is very rare here) picked up. We had a little, brief shower that reminds me of living in a tropical location, followed by the sun coming back out. It was a perfect evening for our first night home...I truly loved it.

Sweet, sweet Liviana. It is hard to know how much of her life I missed in the 60 days Giovanni was in the hospital. 60 days is a long time in an little MLD life. It is harder and harder for her to do simple things. She is still eating fabulously. She LOVES food, makes requests and eats really well quantity and nutrition wise. She can hardly feed herself anymore though. Her little hands shake too much and don't move easily anymore and she has a hard time gripping and holding things. We feed her or we make things a size that she can handle easily but she still often has a hard time with her hands. Her legs are straight and stiff most of the time and days but then she will have a day like yesterday where she will have them bent most of the day and do absolutely great. I wish I could bottle whatever it is that gives her good days. She can't sit without support anymore. We have to hold her or have something behind her. She used to be able to sit if she bent her legs but even if she bends them it is like a spring that pops back into place. We have kept her abs and back strong with little situps that she loves doing but it doesn't seem to help her core strength to help her sit by herself anymore. She has abs of steel though :). She still smiles, laughs and what absolutely melts my heart and brings me those fleeting moments of peace...she cuddles. It is HARD for her to cuddle. Her little body is stiff, she has nerve reflexes and spasms and she can't bend her legs easily to sink into you like another child would. However, a few times lately, I have held her and she has sunk her head down, tucked her little arm underneath her, like she always used to do, and snuggled in with me. One day was a few weekends ago while we were finishing up lunch at a restaurant. Brad took Aria to the restroom and it was Miles, Liviana and I. She was really uncomfortable on my lap and didn't want to eat anymore so I turned her towards me to hold. Her legs were straight down in front of my seat...not a position you would think was comfortable. She, however seemed to just melt into me and she laid her sweet little head on my shoulder and snuggled her face into my neck and I felt close my eyes and squeezed them tight because it started to bring tears to my eyes. It was so great to know she was feeling that much comfort and peace. I asked her if she liked cuddling with mama...she slowly said...uhhhh-huhhhhh. Miles suddenly, at the same time said, "I don't want Liviana to become an angel...I want her to stay here with us..Does she have to become an angel". I did not even know how to respond. They love their sister so much and it makes me sad to know the pain they will feel one day...the pain they already feel. Aria has grown very attached to her. That day and each other day I was home (this was before G was out of the hospital), if we were out, Aria would hold Liviana's hand the entire time. On the train, she held her hand non-stop and played with her, entertaining her and making her smile and laugh. She is such a good big sister.

Week before last we had to get her something for constipation. It is a very common MLD problem and I believe unrelated to diet, fluid intake like it is for everyone else (correct me if I am wrong MLD parents). It was one of the first odd things that happened last May, almost a year ago when we first saw MLD onset in Liviana. She will have horrible, long...sometimes hour long screaming and crying sessions. It is once a week, sometimes every couple of weeks. It is hard to see and hard to not be able to instantly just take the pain away for her. The medication they offered had its own horrible list of side effects that would regularly cause her more problems than the weekly or every two week bout of constipation. We are going with suppositories for more immediate relief without the side effects. We have only had to use them once so far and when we get home I will look into other options that are not as hard on her little system.

We will soon have her eyes and hearing tested here. I am worried about the results. Blindness and/or deafness are both an unfortunate part of MLD. She has started having wandering eyes where they won't stay in line and looking in the same direction (pardon my lack of official medical terminology). She also has started grabbing holding her ears and pressing. It is not like she has pain but almost like when you have water in your ears or they are popping and you are trying to correct it. I wonder if she does it because she has ringing or can't hear well. It is so hard for her not to be able to answer me when I ask what is wrong. She can still talk but it is usually repeating what we say or basic things like, Hi, All Done, G-mawnie :), Mommy, Daddy, Aria, etc. Ahhhh...I watch her sleep, with her little hand tucked under her cheek. That too brings me those fleeting moments of peace. She is pure perfection. I don't care what she has.

I feel like this has turned into a novel again. That is what I get for blogging only once a week. I do update more on Facebook because it is easy for quick and easy updates. If you are not a friend you can send me a request if you would like. I tried to add a widget on the blog that would show my status update but it did not work..I will try again soon.

Don't forget about Mom Prom on the 22nd. I really, really wish I could be there to meet all of these fabulous women. The website can be found HERE.

Here are 3 photos I took last week. The first is my two beautiful girls at the park the day before Giovanni came home. The second is G, hours before leaving his room, AKA, The Box, for the last time and the last is our first dinner all together as a family that night. It was a wonderful night we will not ever forget.

Hug Your Babies!

Day 59: Freedom for Giovanni Tomorrow!

2011-04-11T14:09:00.002-05:00

They are releasing Giovanni tomorrow. His counts have been great, his platelets are at normal levels and his Neutrophils are at 970. He is getting a little boost of Hemoglobin today, as his has been running just above their transfusion cut off. They said they are not worried though and believe it is from the daily blood draws.

We are so, so, so thrilled. I truly cannot imagine not living here anymore. It will be 60 day and 59 nights tomorrow. He is a strong, amazing little boy who inspires me with his ability to keep smiling while being stuck in the box. He indeed kept the smile on my face each day. In these last few days as he has noticed me pulling my mask down more he has started waking me up by pulling my mask down and giving me a big kiss with his little cheek smashed up against mine. It really makes my heart skip with such love and cuteness!

I apologize that this is a short post. I have SO much to tell you all about including our Romanian Market experience two weekends ago, My sweet, nurturing kids, Liviana's cuddling, The crazy Milan market and much more. It also took some great photos today of Aria, Miles and Liviana that I will try to get to in the next couple of days.

I am tired (mostly emotionally probably) and want to feel rested for the big day tomorrow. I have been told release time is 2pm...7am CDT. EEEEEEKKKKKKKKKKKKKK! We are short a bed and Brad had a whirlwind fiasco trying to get one at Ikea...another long story.

I will blog in the next couple of days when we are home. I am hoping that I will be able to load video of the homecoming. I have had problems downloading and uploading videos so I hope it all works out this time so we can share the big day.

My family is going to all be together! It brings me such joy! The peace will come tomorrow when I look at all four faces together and take a deep breath.

Hug Your Babies!

Day 48: Insert Clever Title Here

2011-03-31T10:51:00.004-05:00

Here we sit. It is almost 6pm Milan time (when I start this post) and we are in our seats awaiting our dinner for the night. Giovanni is eating his appetizer that I gave him from my cabinet of food. He is doing great. He looks like he should be outside running around in the beautiful spring sun with his brother and sisters. I hardly think he could handle such excitement and fun right now.

As of today, his Neutrophils are still at 300. His hemoglobin is great...maintaining on its own. After my last post on Sunday about them saying the counts were not reliable so we would wait until Monday they reported his platelets as 8,000 on Monday. I could NOT believe that number. They were 99,000 two days prior and went up to 99,000 on their own from 88,000. I swear it had to be an error. He ended up getting a platelet transfusion obviously and the next day his platelets were 164,000. They now sit at 128,000. I just don't know what else to say about the counts. I am honestly sick of them, ha. I am to the point I don't even want them to tell me what they are since they really don't tell us when he will be leaving. Maybe I will tell them I just want to know every few days and hopefully after a few days it will be good news. I hate how each day hangs on having them come in and tell me the counts. Giovanni is really doing awesome and they seem surprised that he has done so well since it was not the same for the first child or the other one here now. Not a single infection or anything despite being neutropenic this long. I of course insist it is because he is breastfed still but know there are likely multiple factors contributing to his strong, healthy little self.

The weather here has been beautiful which is a welcome relief from the rainy, dreary days. I love the time I have home with the kids. Right now, I am here for about 40 hours straight and then I go home for about 8 hours to be with Aria, Miles, Liviana and Brad while Tarah comes up to the hospital. I really get my energy back during those visits that allows me to face the hospital again. Not that Giovanni isn't a total delight to be with while I am here...he really puts smile after smile on my face...but the hospital itself...does not. When I am boarding the trains to head back to the hospital I feel myself getting more and more anxious, breathing faster and feeling stressed. Giovanni helps put my mind at ease and Tarah and I spend a while chatting and catching up when I return...and that all helps the anxiety.

Yesterday I took Liviana outside on the balcony for some sun. I sang songs to her and took her clothes off and let her soak up some the rays. She was SO cute. She laid back on the pillow I had behind her and closed her eyes with a big smile on her face like she was unbathing in her diaper on the balcony. Such a precious girl. Her cheeks started to get all rosy from the sun so we went back in but I think we have plans for some sunbathing again in the future. She really seemed to love it.

Aria and Miles decided to switch beds. They started out sleeping together in a queen sized bed but they ended up having issues like, "stop taking my blanket, stop touching me", etc so we switched Aria to Tarah's bed and Miles to the cot like bed. That seemed to be working great. Miles was sleeping much better by himself. Then, Aria said that her bed was too hard...and I am going to be honest, when I laid on it, it is. She said she can't sleep on the hard bed because it gives her bad dreams. That launched into a cute conversation between her and Miles and his concern for her dreams but willingness to sleep on the hard bed because of the cool shelves around it. Aria was sure to move the calendar she marks days off of for when Giovanni comes home to her new bed too. They are so sweet...I am blessed to be their mother.

I asked the kids the other day who their best friends were. Miles said, "William from my class" (I am unsure if William is aware of his status as his best friend), Aria said, "My whole class" and Liviana said, "GeeeeMani" for her brother Giovanni. It was so cute! I think G would agree and I can already picture him trying to climb up on the couch to sit next to her.

I have been organizing all of the photos off my external drive when I am home. It has been impossible to find anything and when my computer crashed in September I lost my program I organized it all in so I had to start over. It has been like a blast from the past going through all of the images. I can view RAW image thumbnails in the software so even photos I have not processed are visible. The kids have all sat with me as we went through the photos, remembering times, smiling, laughing, oooing and awwwing. It was so wonderful but has also left me with so many thoughts, so much contemplation.

As I went through the images I saw Liviana playing in the yard, running in the sprinkler, bowling, climbing on chairs, playing in a pool..being a normal 2 year old. The photos were from May, June, July...even October. It is so bittersweet to look through them. It got me thinking...if someone would have told me in May, that we would be told, in 6 months that our daughter and son would be diagnosed with a fatal disease and there is nothing we could do about....how would we have lived our lives differently during those 6 months? My first thought was that I would not have worked so much and at the very least, I would have figured out how to be a night owl again and process at night rather than the day when the kids were up. I would not have rushed to answer every e-mail and inquiry right away, I would not have been a slave to the my computer and my work. Don't get me wrong, I love my work, I love my clients but really...what is ever more important than your kids and your family, especially when you do not know how long they will be with you? I would have focused more on living in the moment and not worrying about a deadline, a blog post, getting a gallery uploaded. The moments with the kids should have always belonged to the kids and not my mind of a million tasks that needed to be done.

It is easy in hindsight to sit and think, coulda, shoulda, woulda. I ask each of you, what if you were told the same thing...in 6 months you will find out one of your children has an incurable, fatal disease. What would you do differently and why do we (me) have to wait to find something like that out before we make those changes? Why can't those changes be made now? If you thought of things in your mind, that you would do differently....do them now. Why wait until you realize that you have missed too many moments? Why not live every moment so you don't have to look back in hindsight? It all sounds ideal but in reality it is simple. It would have been simple for me to find ways to not do my work during the day so much, or create a better schedule, or alter my business plan so I wasn't doing so many sessions some weeks. It would have been so simple and then I would have had even more photos to look back on and smile, and reminisce and remember.

Giovanni is in bed, hopefully having sweet dreams of being home, playing with Aria, Miles and Liviana. I have been told that Aria and Miles are in bed at the flat and Brad is getting Liviana to bed as I type. Being together as a family is all that is on my mind. I am not going to worry about the counts going up or down or all around. I am just focusing on us all together.

That is all for now. I appreciate you all!

Hug Your Babies!

Day 47: A REALLY short post

2011-03-30T14:36:00.002-05:00

I had an intention of sitting down and making a big post tonight about the last few days but I am very tired and I think the crib is calling my name :). We are still here obviously. G is absolutely perfect clinically. He looks and acts like any other 14 month old you would see anywhere. Those pesky blood counts are all that is keeping us here and it is a roller coaster.

I will post details tomorrow. Thank you all for the continued support. I read all of your messages and e-mails and even if I don't respond right away your messages mean so much to me.

Hug Your Babies!

Day 43 and 44: What a week

2011-03-26T11:52:00.002-05:00

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." This was one of my favorite quotes from Margaret Mead in my graduate school days. We often used it during community building exercises to help motivate people to be the change they wanted to see around them. I saw this in action this week more than ever before. No, they didn't change THE world but they have indeed changed OUR world. 741 people came together in an amazing way and
have impacted our family more than they could ever know.

Jennifer Morais is a fellow photographer and mother. We met online 2+ years ago in a small group of photographer/mothers on Cafemom. We have grown together in our work and our families...both adding a 4th child to our brood. We have supported one another professionally and emotionally. She put together a Facebook page and planned to hold an auction to raise money to help our family. I remember early last week she was pushing to have 300 people "like" the page before the auction started. She hoped to raise $1500 to help us with our many expenses here in Italy and back home in Omaha. What she started was a snowball effect of 741 people coming together and raising a stunning $5441 for our family! The stress relief that brings us is HUGE. We have medical bills, our rent, utilities, other bills, our expenses here which is basically like living at home except more expensive. We returned our van to the car lot the day before we left and asked to be refunded on our deposit and payments (which they did) because the vehicle had too many problems. When we return we don't have a van for our kids or one that is going to be able to accommodate Liviana who will not be able to ride in a carseat anymore. This auction and these wonderful people have gotten us one step closer to that.

Jennifer has talked about holding another auction and I know there are other people already interested in donating. You can visit the page on Facebook HERE. Jennifer will be keeping everyone updated on a future auction.

While the auction was going on another group of women, most of whom I have never met, were planning a fundraiser in Omaha called the Mom Prom 2011. Sara, Veronica, Judy, Cat, Jennifer, Joy, Jessica and I am sure many others have planned an awesome event for April 22nd at the Regency Lodge. You can visit the Facebook Event page HERE. The plan is that the Mom Prom will be held each year with a new deserving family which is really amazing (I know I use that word way too much...*must find thesaurus*). I cannot wait to be able to help plan the event next year for another family (and dance the night away in a fabulously tacky dress). I cannot thank you ladies enough for what you are doing for our family. I feel like we are all friends already.

Grrrr, dealing with nurse issues as I sit here and G is sleeping. They are wanting to wake him up from nap unnecessarily. Must attend to the issue...shall return.

Ok....so it is a day later for my return. It is Sunday now and I am just getting back to my post. I made the nurse in the previous mentioned situation get a doctor because she was doing all kinds of things that were unnecessary and were going to wake him up. That is one of my biggest pet peeves is when they wake him up at night or when he is napping. A baby who is lacking sleep is not a happy or healthy baby. While I was speaking with the doctor she did just what I was trying to prevent...she woke him up. There really needs to be more balance between what specific medical things need to be done and what is best for the patient at the moment. It could have waited 20 or 30 minutes while he slept.

Anyway....onto those pesky counts. When I last posted I was insistent that the counts they gave me were wrong since they included a Neutrophil count back down to zero. Well...they were not wrong but they assured me this is normal and nothing to be concerned about. The next day his Neutrophils had gone back up to 200 and the following day they were 500! I was ecstatic. In the meantime he had to have another platelet transfusion and a hemoglobin transfusion. Those numbers the next day jumped right up of course to 100,000 and 11.4 respectively. The following day his Neutrophils had gone back down to 300 from 500..no biggie and his Platelets were 89,000 and Hemoglobin 10.4. Yesterday his Neutrophils remained the same at 300 BUT his Platelets went up to 99,000 and his Hemoglobin went up to 11.4. That is the first time they have gone up on their own and that is a huge sign. I don't have numbers today. The nurse rambled on about the lab not being reliable on Sunday so we can just wait until tomorrow. Very odd. We have been here for what...5, 6 Sundays and nobody has ever told us the Sunday numbers are junk.

We are soooooooooo ready to get out of here. I really think it will be soon. I think the fact that his two counts went up on their own is awesome and a sign of major progress. We are not talking a lot about specifics of when he comes home around the kids because we don't want them to get their hopes up again and be disappointed again. I truly cannot wait to see all of their faces when he comes home. I think there will be tons of squealing, hugs and kisses. It is going to be an amazing day.

The weather here has been looking up (I type that as it is overcast outside). The next couple of days will be rainy but then it resumes the bright, sunny 65-70 degree days. Despite the beautiful weather the locals are still wearing their hats, scarves and thick winter coats. When the sun is shining and it is 70 degrees you will still see any child under 4 in a winter coat and likely a hat and babies are still in their snow suits. No exaggeration. I realize that their bodies are acclimated to their weather and what is cold to them is not cold to us. They should go visit Omaha right now with the snow on the ground.

One of our babysitters back home, Abby Fitch, sent the kids a package this week. It contained 4 of the CUTEST dolls, made to match each child. They have not put those dolls down since they arrived. Aria and Miles play with them constantly and took them to the market with us, to the park with Tarah and everywhere they go. Aria's doll has a dress on with perfectly mismatched tights, blonde hair and brown eyes which is SO Aria. She prefers dresses and skirts to pants and shorts and usually has her own matching style. Miles doll has brown hair and eyes and a cute blue and green outfit. Giovanni's doll (Which will wait for him at home since he can't have it at the hospital) is bald :) and Liviana's doll has a tutu on and cute blue eyes. She likes to touch the tutu of course. The dolls were all made by Suzanne and you can visit her Etsy shop HERE VERY cute stuff. Thank you again Abby!

Gosh...I always have so much to post about and I forget it all when the time comes. Oh...the lead doctor is pregnant and due at the middle to end of April. I mentioned to her that I would love to take newborn photos for her as a gift and she was thrilled and said she loved my photos. I am so excited to do some work while I am here. I look forward to taking more photos of the kiddos once we can get out but doing an actual session and a newborn session to boot is so exciting!

I was talking to one of the other doctors about Liviana. We were discussing her issues at birth...the Congenital Diaphragmatic Hernia, the VSD, the Hemivertebrae and don't forget her missing rib. She said how there is not an association between MLD and those of course and we talked about how they never found any overarching genetic explanation for her grouping of issues. I said how amazing she did with her CDH and shes came home breastfeeding, no oxygen support and she was completely normal and she was perfect....and I then added...she IS perfect. We both teared up then. I can't talk about her without feeling that burning feeling in my eyes each time. Every time I see her her beautiful face captivates me. That Livi spirit pours out even if she can't express herself like she used to.

I take tons of photos but I can't do anything with them at the hospital and when I go home for visits I either forget or I choose to not spend time uploading and going through photos. I feel bad that I am a photographer and I share photos few and far between but I just don't have much opportunity. I have full cards and take a ton though...I promise. When Giovanni is out of the hospital you will see more.

He is waking and I forgot everything else I was going to talk about. I adore my kids so much. They keep me going, keep me smiling and keep me focused on what it is we are fighting for.

Hug Your Babies!

Day 39: Still Hanging On

2011-03-22T02:36:00.002-05:00

We are still here in the "box". I think I intentionally made a new post today instead of tomorrow just so I did not have to type Day 40. I am holding out hope that we will be out of here by the end of the week.

His Neutrophil counts were 200 on Sunday and I never heard yesterday but I am certainly hoping that was the start of a regular upward trend. It has to be...we have 3 anxious little ones waiting to see him at home.

Sweet Aria. She loves him SO much and talks about him constantly. She came out the other day when I was home for a visit and said, "Giovanni will be home in 3 days" and showed me a calendar she had made, complete with yarn to hang it over her bed. 9 days prior she heard us saying that it would probably be 12 more days so she went and made a calendar and was marking off the days...she only had 3 left so she thought she would be seeing him soon. It made me so sad for her. I told her that we were not sure of the exact day but it would be more than 3. She was so sad so I told her we could add more days and keep the count going and promised her he would be home soon. I saw the calendar yesterday still hanging above her bed. She is such a sweet, special soul. I feel like she has to much seriousness and adult things weighing on her 6 year old mind. She talks about Liviana all the time and brings up, "Remember when Liviana would come running into the room and tell us, "Guys, Calliou is on, Calliou is on"...she doesn't run or walk anymore though, I miss that". It breaks my heart that she spends time thinking about those kinds of things. It is a daily event. I am honored to have such a sweet, sensitive, caring, nurturing daughter and I have to believe that all of this will shape her into the person she will be as an adult...I know she is going to be an amazing woman.

I think Giovanni has been in the hospital too long. He thinks of all of the equipment around his bed as "his" and he tries to run it all. Today, when his fluid pump starts beeping he walks over to the pump in his crib and starts pushing buttons to stop it. He is running things around here. I can't even begin to express what an amazing little guy he is. He continues to smile, laugh, play and have fun all day long. The situation has not phased him. He has not been outdoors in 39 days, his feet haven't touched the ground in 4 weeks and he is either in the crib/bed or high chair all day long. He still thinks his life is a joy. I love how he knows I am smiling at him even with my mask on. His face lights up and his smiles are the cutest thing ever. He blinks his little eye lashes and brings me such joy...and peace each day. He is growing up so much here too. He has started saying, "Night Night" and he says "Hi", "Car" and then has a whole intricate language all his own. He was playing on the phone today after I got off the phone with Brad and it sounded like he said, "Hi Dada" plain as day. He is just such a doll...I can see why the kids miss him so so much and the nurses adore him.

I have been slowly working on this post waiting for the blood counts for the day. I asked the nurse once for the numbers and she showed me a sheet that had HORRIBLE numbers including zero Neutrophils and platelets of 22,000. I have to believe it was an old sheet or someone else's sheet all together. She did not speak English so I could not discuss the issue with her. I hit the button a few minutes later and told her I wanted to speak to a doctor (Medico) and she left. That was about an hour ago...still no doctor. It is SO frustrating to have my entire day hinge on those numbers and I can't GET THEM. I can't leave the room so I am stuck here and just have a little nurse button I can hit but honestly, I have had to wait 40 minutes for someone to come when I do call a nurse. I have hit the button again...we shall wait...again.

I am debating about going home for the night and letting Tarah stay with Giovanni. He sleeps better when she is here than when I am. I thought a nice to just sit and do nothing and not sleep either on a chair or in a crib sized bed with a baby would be nice.

Ever since I was young, when I go to bed I tell myself what I want to dream about. I guess I always thought that my subconscious would listen. Sometimes it works. I still often do this and my usual dream request is about Liviana. I want to see her running, walking and being the Liviana we all know from just months ago. She has changed so much in the past couple of months. She is getting so tall, her hair is darker, curlier and longer. I try so hard to imagine what it would be like to round a corner in the house and see her standing there, with that amazing smile as she runs up, hugs my leg, looks up and says, Mommmmy. It is so hard for me to even imagine what has happened to our lives, and her life if the last few months. The "whys" are still there. It is hard to imagine any "why" this would happen to her. There is not good explanation. I hear the "God only gives you what you can handle" phrase all the time but my issue is, what about her? What about what she can handle, what about what she should have experienced and had in her life. I WILL handle this all but it certainly doesn't always mean I can.

I am still waiting on that nurse and/or doctor. Someone is shooting off fireworks outside. Maybe that is a sign for good counts :).

Hug Your Babies!

Day 34: VERY cautiously optimistic

2011-03-17T13:53:00.002-05:00

I cringed when I had to type Day 34. How did we get to day 34? The walls have started to close in on me a bit. I was here for 6 straight days so we could minimize the germs from home where Aria and Miles were sick, being brought here. On the 6th day I got to hang out with Liviana (which I LOVED) for her EKG and MRI so I was out of Giovanni's room but still in the hospital. Livi spent her hour in recovery, was eating, drinking and telling me she wanted to watch Calliou on my $19 Pre-pay cell phone and I was just trying to get anyone to release her at the time they told me we could leave. I actually ended up leaving after a nurse took our her IV but then disappeared. I was beyond frustrated and the walls....they were closing in. That night, as I was getting Giovanni to sleep I started to have a little mini-panic attack. I felt like I couldn't breath as I suddenly thought of how many doors were between me and fresh air. I had to take many deeeep breaths to keep myself from freaking out and looking like a crazed person. I have claustrophobia issues and even though I am not in a small space I started feeling very trapped. Not good.

I have the prize in focus though. Sweet freedom for Giovanni and myself. Two days ago we were told it would be around 10 more days...could be 7, could be 13. He has to get his Neutrophils up to 500 and he needs to maintain 40,000 Platelets on his own without transfusion. This is where the caution comes in....he is still sitting at 100 neutrophils that he hit last week "early". He also is not currently maintaining 40K platelets. We know that he engrafted and that his bone marrow is growing, the blood cells are growing...it is just a waiting game and it feels like torture to me. I truly cannot wait to see his face when we take him outside and when he sees his brother and sisters for the first time again and they see him. I am so beyond ready to get out of here that I have to force myself to not get too excited so I am not let down when it doesn't happen. I still think he is SuperGMan, he is still healthy and strong. We just need Neutrophils and Platelet prayers, pronto!

I know you are all happily celebrating St. Patrick's Day with your green beer and festivities. Drive safe and enjoy. Today is a National holiday in Italy. It is the 150th Anniversary of Italy's Unification. Everything was pretty much shut down from what Brad and Tarah experienced trying to go to the store and drop things off at the hospital for us today. It rains here all.the.time. It is like the Seattle of Italy. It certainly adds to the melancholy of being stuck in this room when it is rainy and gloomy outside all the time. I am craving spring, warm weather and well....Omaha! I miss home so much. I really can't wait to get home and live some appearance of "normal" until we have to pick up and come here all over again.

I am off to bed. Send all the good vibes our way to get his counts up. We MUST get out of here!

Thanks for the continued support. Thank you to everyone to organized and came to the fundraiser on Tuesday. I wish we could be there to thank each and every one of you. Don't forget the auction on the 21st. They have tons of awesome auction items waiting for you to bid. You can join the page HERE

Hug Your Babies!

Amy

Letter to Liviana

2011-03-15T01:48:00.002-05:00

My sweet girl. You have been on my mind...really, you are always on my mind. I am excited to see you today, even if it is to take you to a couple of appointments. You always light up my day. I laid awake last night smiling as I thought of all the things you used to do. I hate that they have to be thoughts in the past and that I won't ever see those things from you again. The smiles usually turn to tears. We fought for you from the time we found about your CDH when I was pregnant with you. I refused to let you go and it was you who showed what a fighter you were by breezing through your hopsitalization at birth. You really never looked back. You were and are, a spirited, spunky, amazing little girl.

Right now, if you could climb up on the stool in the bathroom and play in the sink...even if you made a mess, I would not stop you. If you could stand behind me in the kitchen while I cooked dinner, too close under foot to be safe, I would not ask you to move. If you wanted to stand behind me on my office chair while I worked, with you arms wrapped around my neck, I would let you squeeze as tightly as you wanted. If you wanted to laugh, play and bounce on the bed while I tried to get you to sleep, I would bounce with you. If you wanted to convince Miles to open the back door so you could go out and play, I would sneak out with you. If you wanted to dress and undress your doll and push her around in the stroller all afternoon, I would play with you. If you wanted to get in the refridgerator and bring out random food items to eat, I would help you make something. If you wanted to sit, and talk to me about anything under the sun, I would gladly listen.

I hate thinking that I miss you when you are still here with us. Still smiling and laughing. I know for everything that I miss so desperately seeing you do, you must miss doing them. You do new things now and still make us smile and laugh. You are a light in our lives...a beautiful girl who was chosen to be here for reasons far beyond what we could comprehend. I will love you forever and a day. I will never stop fighting for you, believing in your strength and praying for miracles. I can't wait to see you today sweet Livi.

Love,
Mommy

Day 28: It's a Bird....It's a Plane...

2011-03-11T09:13:00.002-06:00

It's SuperG-Man! I know I need to *knock on wood* when I say that since he isn't out of here yet but I can't help but think he is something extra special. I am going to give up on saying I will post more often because I am always so surprised how long it has been when I start the next new post. I apologize. I was ill this week and had no desire to get on the computer at all. I am on the mend and feeling better and ready to start moving closer to getting out of here with our sweet boy.

Going back to my last post it seems like things have been up and down and all around. Last Sunday I was sitting here with Giovanni finishing lunch when I started hearing shouting coming from the room next to us. That is the room with the little boy from Egypt who is also undergoing treatment for MLD. As I started to get up the shouting turned to pounding loudly on the door. Their room and our room are the only two in this space, behind another door that exits to the main hallway. I realized that if she did need help she likely was unable to leave the room so I started to get up and go get someone's attention when I finally saw someone heading our way. I went back next to Giovanni and heard shouting and commotion as the nurse went running from the room holding a baby who looked very...VERY unwell. He then turned and went back into the room after motioning for other people to come help. In my mind, at that moment, he looked like he had passed away by his positioning and his skintone. My heart started racing a million miles a minute. I ran over and picked up Giovanni to protect him from anything and everything I could. Like I have so many times since we got here I wanted to run from here so fast with him. I did not know what happened yet, I did not know if it was as serious as it looked but all I knew is that Giovanni and that baby were going through the same thing and even though they are different children, it scared me to the core to think that something serious had happened to him and could happen to Giovanni. I waited, clutching my sweet boy as doctor, after, after doctor, after nurse streamed into the room. It was very quiet and I waited to hear a baby cry....hear something to indicate that everything was fine. Nothing like that happened but people were leaving the room rather casually like nothing really serious had happened. Finally, about 20 minutes later the nurse who was holding the baby when I saw him. I immediately asked if the baby was fine and he said, "Oh yes, he is fine" He went on to tell me it was a "fake alarm" and a communication issue with the aunt who was staying with him. Holy Cow! It did NOT seem that way at all. It was so very scary and I think my heart was racing non-stop the entire time until I heard he was fine. More doctors were in and out all night and an x-ray machine paid him a visit as well. I have since learned that he was pulled off of his line and it may have pulled on the port in his chest....I am not positive though. All I know is that he is fine, Giovanni is fine and that was a darn scary afternoon.

We had been awaiting test results for a long time regarding a possible infection with Cytomegalovirus. It is the most common infection post transplant and dangerous. Giovanni had a one test come back with a very, very small result and small viral load. They started him on an anti-viral immediately and we waited for many days for the final test results. In the meantime I questioned them on whether him having zero neutrophils would mean he could have an infection but no clinical symptoms...no fever, no other symptoms. I never got a straight answer. In the end, of course he did not have the CMV. I was not surprised and I am glad that he continues to be healthy.

Two days ago his neutrophils finally pulled up from zero and were at 100. They told us that they came up quicker than they would have expected (pssst....he's superG-man) so we should expect them to go back down again before maintaining the increase. Well...two days later they hold at 100 and they have decided that they will probably continue the increase upward :). I believe she said he had to be at 500 before they would consider releasing him. We are soooooo close.

He had to have a platelet transfusion again today and I am guessing this will be the last one needed for platelets. After they started the transfusion he started grabbing his chest at the location of his catheter and whimpering like it was bothering him. I looked at it and it looked very puffy underneath the catheter. I then noticed his shirt had wet spots on it and quickly noticed he had fluid running down his abdomen from underneath the bandage over the catheter. I knew that meant it was pooling underneath his skin and obviously not going into this system. I turned off the platelet pump and called a nurse and waited and waited (this is the normal pattern...I would say 15 min average wait time). Knowing the situation was serious I waited about 1 minute before going out in the hall and telling another passing by nurse to get our nurse now. She came in and thought I had called her for a kinked line...when I showed her what was happening she went and got supplies and another nurse so they could change his catheter. This would be change #10 since he came into the hospital. You could see the fluid built up around the catheter on his chest and when they tested it to be sure it had to be changed the fluid they put in ran right out of him. He knew what was coming. It is a horrid process. A big needle being shoved into a box implanted in his chest while people hold him down. I SO cannot wait to get him out of here! All was well after the replacement and the built up fluid will take care of itself. Poor babe.

I had mentioned on Facebook but forgot to mention here that he did end up loosing hair. He only lost his "old" hair, which isn't a bad thing, since his old hair was a mullet shaped section on the back of his head. He also lost a little from the very front and sides but the new hair he had grown in the last few weeks that reveals and adorable little cowlick on top of his head is still growing strong. I do miss the mullet a little though.

His skin has also gone through some transitions since his chemotherapy. He has darkened, mottled areas in some spots. It looks like he is an older person with sun damage. They said that will fade so not to worry. It is hard to see those outwards signs of what has happened to his body. He has stayed so strong and healthy that those are the only signs I have to tell me how hard this was on his little system. I was never really worried about him losing his hair...it was what him losing his hair represents that I was not looking forward to seeing. On a good note his rash on his face is gone that worried the doctors so much. It disappeared the same time the drooling and teething ended...imagine that :).

Liviana is doing well. Her boisterous laughter is enough to make anyone smile and laugh along. Brad makes her laugh so hard when I am home. She also has this breathing in laugh that she does that is hilarious. She had seemed to be talking less but this past week when I was home more I noticed she is being chatty again. She woke up chatting up a storm and it is just music to my ears. She has an MRI scheduled for next week. Brad and I have let them know that we are not going to put her through any tests that we determine to be too upsetting or stressful for her. The EEG and Nerve Conduction test are two that are going to be no-go's for me. Our goal, as she lives the rest of her life, is to make sure she does it happily...not being put through painful or stressful tests. I am interested to see the results of her MRI compared to her MRI from November and that will involve an IV being placed which we hope can be done without much stress to her. She really is a light in all of our lives!

Miles and Aria are both sick. Fevers and headaches. Bless their hearts. Miles got sick first and that is when you realize, yet again, how each child is such an important piece of the puzzle in the daily lives of everyone. He is our entertainer, our talker, our..loud talker. He always has something to say, a question to ask, a story to tell. When he was first sick on Tuesday though....the place fell silent. It was very quiet and very sad. We so need all of our kids healthy and together! His cheeks got all rosy, his big brown eyes, curly hair and dark, long eyelashes looking up at me....you just want to make it all go away. Aria got sick today and is being nursed to health by Brad and Tarah. Liviana has avoided it so far but I know she will eventually be next. We have to be on top of making sure she doesn't have a fever for long since it can speed up deterioration for her. Please pray that she can stay healthy and if she doesn't that we are able to keep the fever under control.

I find myself with a headache and I have had to deal with the computer going out twice while I have been working on this so I am going to wrap it up quickly.

Remember, the fundraiser is this Tuesday at The Prestige Lounge in Omaha from 5-9pm. You can follow a link to a Facebook event page on my previous post. There will also be a story in the Omaha World Herald on Sunday. I want to thank Carol Bicack for contacting me and being so kind and thorough as she prepares the story.

I have a snuggly buddy to crawl into bed next to. It is hard to think that all of this we are doing for him won't work. It really has to work. I look at him and cannot bare seeing him go through the same things Liviana has and will continue to go through. I never thought fear and hope could be so intertwined together. I can hardly tell them apart in my own mind as I think about Giovanni's future. I do believe in miracles and I hope they will find their way to both him and Liviana!

Hug Your Babies!

Amy

Day 21: This and That

2011-03-04T04:21:00.006-06:00

Giovanni's White Blood Cell count yesterday morning was zero. I have not heard the counts yet for today but it is expected that he will sit at zero for a few days before going back up. We are in the danger stage where infection risk is great. If he can stay infection free he will be released in about 18 days (She told me 20 days 2 days ago and you better believe I am counting down). I am hoping and praying we can keep him healthy and free of any bacteria, viruses or fungus in this fragile time. His other counts are acceptable. He has had both Red Blood Cell transfusions and platelet transfusions this week so other counts remain stable. **Update**After I typed this early in the day they are now telling me he came back with an odd result on his CMV test. That is the main infection he is at risk for and their biggest concern. They said it is a very slight result which is puzzling so the test was repeated. He has no fever and no signs of infection. I am guessing it is an error. Let's hope it is an error.

Despite having a depleted little body he is staying strong and happy. He is truly the one handling all of this with grace. His timing is not he best but he also is teething again. The poor thing is a drool machine 24/7. His face is covered in a red rash, typical of him when he is teething. The doctors have a hard time seeing "normal" and spend way too much time obsessing over his drooling and facial rash. I get asked the same questions every single morning about his teething, his drooling, etc. These are the younger doctors who make the rounds during the day and I have been so close to saying, "None of you have children, do you". I realize it is hard for them to view things as "normal" when they are in a care position as they are but a 13 month old who is drooling, has a tooth you can feel below the surface on his gums and has a facial rash as a result is indeed normal. Bless his heart!

He has decided he is on an eating strike. He refuses the hospital food and I must say...I don't blame him. I can barely stomach seeing the same thing every day. This too has caused them to worry even though I have told them that it is obvious to me that he simply is tired of the hospital food. He will eat other things, just not the food they bring. Again, I don't blame him. He has taken up nursing way more to make up for the lack of eating and is maintaining his weight from the nursing alone since he actual food intake is probably 5% of normal. Brad brought me some pizza one night and I gave him a piece (I found out that was a no-no since they could not control how it was made) and he was thrilled! So, every morning when they come in they ask if he is eating. I say the same thing I do every time and they ask the same questions about why I think he is not eating, is he in pain, etc. I really say the same thing every single day. I think I will record it tomorrow and just push play when they come around the next day. *Sigh*...my patience is growing shorter with each day that goes by in the box. I feel bad about that too and I try to take deep breaths, I really do.

I can't tell anymore if the days seem longer or shorter. I try to stay on such a schedule with him. It is the only way to stay sane. I feel like the bedtime nazi because I am always calling the nurses in to give him his nighttime meds at 7:30 instead of their usual almost 10pm. I run a tight ship around here and I think I have seen some eye rolls when I tell them it is his bedtime and I don't want him interrupted. If you remember from my posts from his first hospitalization, they don't go to bed as early around here so 7:30 is probably like 5:30 at home.

I wanted to thank each and every one of you who sent me a message offering help with our babysitter situation. It was a rough week or so but after a ton of talking and thinking Tarah has decided she wants to stay with us. We are very happy that she realized that is what she wanted and we plan on not having anymore stressful shake-ups like that again. I know it is hard to be here. I think of home all the time. I miss the ease and convenience of it all. We tell her to get out on her own and I am going to force her out on her own when Giovanni and I are out of the hospital. Do you hear that Tarah!

There are so many amazing people planning and organizing fundraisers for our family. Any family in this situation would be so blessed to have friend like all of you...even my clients are getting involved in helping. I truly appreciate you all so much. Here are a few things that are currently being planned or currently on-going.

MadiLu Designs currently has a set of 5 card templates for photographers with 100% of the proceeds going to Livi and Giovanni's fund. I have never met Kim of MadiLu Designs but she ahe has been touched by MLD in her family and she has worked with another special MLD family as well. I can't thank her enough and seriously...the templates ROCK! Go check them out.

March 15th Fundraiser at the Prestige Lounge at 810 S. 169th Street in Omaha. 5
;00-9:00pm. The Prestige is donating 10% of the nights proceeds to our fund. You can join the event page on Facebook HERE

Liviana and Giovanni's Journey Auction. This is being organized by a photography friend, Jen Morais in New York. The auction will be held online on March 21st. You can get more information on the auction and how to submit your own items HERE

I know there are other fundraisers and I will get them listed this weekend. I need more details on them so send me your information and I will post it for you.

What would we do without all of you. I cannot describe the difficulty of this situation. The unknown, the fear, the stress of it all. Not for a second, when you find out your two kids will be lost to you would you stop and think about bills and money. All you think about is doing anything and everything you can to save their lives. After the adrenaline settles...that is when you start the worrying over the bills and money and that is when all of our wonderful friends and people we have not even met step in and help put our minds back where they belong. On our children. Bless you all! A HUGE thank you to the Ludackas for their assistance and support with our financial needs at home. I can't tell you how much easier I am breathing with your help.

I was very happy to get out tonight for a couple of hours with Brad, Aria, Miles and Liviana to attend a birthday party for our new friends, Lisa and Marcus's daughter Emma. She was turning the big FIVE and a party was in order. The kids played so hard and I saw smiles and joy that has been absent for a while. They are happy here but that carefree nature was not in them until tonight. They didn't even speak the same language as the other kids but they had so much fun. Aria and Miles are SO close. They were holding hands, watching out for each other, helping each other in the games. It was so, so cute to watch. Liviana sat with Brad and I and laughed and cheered them on. She kept saying, "Miiiiilllles" as he jumped around unsure what he was supposed to be doing in the game. He really was like watching a cartoon character at play. I was almost in tears. It was hard sitting there holding Liviana. She should be out there running, laughing and playing. Just last year she would have been.....just 6 months ago she would have been. In such a short time MLD ravaged her body and is slowly taking her from us.

She is starting up her appointments again and I am afraid I will be, yet again, the difficult mother next week. They want to repeat her MRI from the one she had in November (which I am fine with) and do a series of other tests including a EEG and a nerve conduction test. The nerve conduction test is a no-go for me unless they can give her something to calm her. It was HORRIBLE watching Giovanni go through that test and Liviana's medical information needs are different than his and her life is too short to put her through that type of experience. The EEG they will require her to be asleep for part of and I am not sure how that is going to happen. She doesn't get to sleep easily and she certainly won't get to sleep easily on the hard surface they will make her lay on. It is too hard on her body and no matter how useful the information is, I cannot put her through it. I will have talks with the doctors on Monday about the tests and we will go from there. The hearing and vision tests are important and likely won't bother her much. I worry about her vision so I am anxious for those results.

We FINALLY received our package from my friend, Kelly Langfeldt that was mailed on January 25th. It came yesterday with $20 due. Gotta love the Italian Postal Service. I was in heaven with some shampoo and conditioner she sent me from Whole Foods. I felt like I was back in Omaha wandering the aisles sniffing everything. Another package arrived from a fellow CDH mom, Rachel McCabe. It has toys and things for the kids. It was like Christmas to them. They were so excited and Livi and I sat and played with her sticker book right away. Rachel's package was sent FedEx, arrived in a week and did not require us to pay anything. It seems like FedEx is cheaper, faster and as long as you do not declare a large amount we don't have to pay to get our package. Thank you so much to everyone who thinks of us and sends things for the kids. It really means so much to them and us.

My back is aching, I am tired and I have a crib sized bed calling my name. More updates this weekend. Thank you all for continuing to follow our journey. The support is priceless to us.

Hug Your Babies!

Amy

Day 18: Picture Post

2011-03-01T05:12:00.008-06:00

I have been taking photos of Giovanni while we spend time in the box but I can't do anything with them until I head home for my visits. I finally remembered to bring the camera back for a download so here are a few pics of the G-man over the past couple of weeks. The photo with the room full of doctors is the night of his cell transplant.

Last one is the quick shot of the train coming into the station. I know you can't tell it is the train though. I will hopefully have more time next time and use my wide angle lens.

Day 13 : A Time For Transitions

2011-02-24T08:31:00.003-06:00

Ok, I know I missed a few days posting....I apologize. It is not easy to find time to get on the computer when it is the G-man and I one on one all day. He keeps me busy and creative coming up with new ways to keep him entertained. We blew up hospital gloves one night, we have put toys in socks, used the thermometer case on our fingers as puppets. You name it, we have done it.

He is really doing well. I am so, so proud of him and how strong he is physically and mentally to not be fussy being stuck in a room and bed. They expect in these first two weeks following the chemotherapy and transplant for his body to go into Neutropenia. That is when there is an abnormally low number of white blood cells which makes the risk of infection great. So far, his counts are staying strong. They had a slight drop but then they went back up slightly. They really seem a little surprised to the point that they rechecked all of this Chemotherapy levels from when they were administered and the blood draws afterwards. All were at the expected dose levels and a couple of the draws afterwards indicated levels at the top threshold. So...he is Superman I guess. I know his levels are probably going to drop this week and Superman will be at risk but for now...he is still strong and healthy. Ha..see, a couple of hours after I typed this they came in tonight and said they are going down. His Hemoglobin is also sitting at 9 and they will transfuse at 8 so that will probably be this weekend. He will make it through this. He has proven himself to be strong. We will also know his cell activity next Friday. That is a HUGE day to me. I am very anxious already.

Transition #1 is that they moved us to the new ward we have been hearing about since we came here. I almost wish they would not have talked so much about it because I got this picture in my head based on all the hype that it could not possibly live up to. We were told multiple days we would move but Tuesday was the day. Brad was here to drop off some clothes for Giovanni so he stayed to help move our things over. The new ward is painted in orange and blue paint which definitely is warmer feeling than the white walled halls. The doors are all automatic and the entire ward is air sealed to keep the patience safe from outside germs. You have to wait for the air compression to reach the right level before the doors will open, reseal and air compress again. We get to our room and wow.....it is way smaller than the room we were in and there is only one window....I miss my 4 big windows since I crave natural light for my sanity. Not only is the window small but it has blinds on the inside and you can't raise them, only turn them up or down. My mind is spinning with anxiety and complaining and I feel bad about that but this is where I am going to be living for the next 5 weeks. We were basically just dumped in the room with the malfunctioning beeping door and left. It.would.not.stop.beeping. (and wouldn't you know it, as I type this the door started randomly beeping again. A nice, solid, high pitched beeping while Giovanni sleeps) It was driving me insane. There was no refrigerator like in the other room and they seemed surprised about that, there is a big changing table in the bathroom that semi blocks the door to get into the room, there was no high chair like I was promised, no trashcans and no diapers for him which they told me they were out of his size and I would have to wait until the next day (Brad made a special trip with a package for him). On the positives...it is warmer feeling like the entire ward, the TV is nicer (even though I just put it on the music channel for noise) and feels cozier. The nursing staff and doctors seem annoyed by the rooms a bit and our door is broken and does not open by itself as they should. I really feel bad complaining but this is where I have to stay, 24 hours a day with Giovanni (accept for a few hours every other day when I go home to see the kids). My ongoing joke (yes, I find myself funny) is that I have yet to find the bartender over here at the new ward and when I do I hope he has my drink made.

The kids like the new flat. It gives them much more space and feels more like a home than a hotel like were before. They miss their brother so much and it will really feel like a home when we are all back together as a family. There are 3 parks in walking distance and a canal to walk along as well as little town shops to wander by. It will be nice when G and I are back home and we can explore a bit more all together. I am all about learning what we can about the area we are living. There are several other families here for the hospital living in the Vimodrone area where we are. They do transplants for multiple other diseases so it is just the two MLD families and then another family from Turkey whose son has a different genetic disorder. One of the nurses commented to us that we are the first family from the US to come here that all of the families have been from the Middle East. I thought that was interesting that they all come from the Middle East.

We are in an area of the ward with just two rooms that are behind one of the sealed doors with our own sealed doors. The other family whose child is the #3 gene therapy patinet is next to us. I mentioned them before...they are from Egypt. The mother and I have waved to each other in the rooms and today when she was leaving she stepped in front of our door (the doors are glass) and waved, motioned towards Giovanni and gave a thumbs up? I acknowledged that yes, he was doing well and then asked her the same about her son who finished his chemotherapy today. She gave a thumbs up too. It was a nice exchange between mothers who know what the other is going through. I want to find out if she has a computer over there and we can e-mail each other and translate them into our own language when we receive them. It is as if we have a bond through the wall. She is experiencing the same fears and excited hopefulness that we are.

Our other, less exciting and very stressful transition is that our babysitter Tarah, who lived with us in Omaha, has let us know that she really misses Omaha and wants to go home. This is devastating news to us and frankly, to the doctors too. They have let her know that she cannot leave until we find someone to replace her which will not be an overnight task. We know a lot of wonderful people but they all have children of their own and cannot come here for an extended stay like that. I am most upset for the children. They need stability now more than ever with Giovanni and I gone and she provided that for them. They will now have to meet a new person and go through that tough transition all over again. I worry that they will be left wondering if they did something wrong since they think of her as part of the family and she would be leaving us. Giovanni is very attached to Tarah and he gets very excited when he comes to visit her at the hospital. It makes me very sad that he will not see her anymore. It is all very tough but we will get through it. We have gotten through so much already together.

My head is pounding. This has become a nightly thing the last few nights. Giovanni is snuggled in bed and I am going to join him.

I will try to be better with updates. I realize they don't have to be novels and the more often I post the shorter they can be.

I appreciate you all. We have several friends working on fundraisers. I will be sharing the information with details very soon. We are so blessed to have the people in our lives that we do. We could not get through all of this without you.

Hug Your Babies!

Amy

Day 8 of Treatment: Completed Transplant and Emotions

2011-02-19T01:28:00.002-06:00

We had a successful transplant last night at 7pm with a room full of doctors and nurses. Giovanni is very popular around here. Earlier in the day they told me they would give him something to keep him calm since he had to lay still for a while but when we were ready to begin Dr. B told me that I needed to keep him calm and not moving around for 15 minutes. Uhhhhh.....is that even possible with this kid? I was a bit stressed but took on the task and entertained him like a clown for 15 minutes while the cells were slowly infused back into his system. He did awesome and the transplant was completed successfully. I took a huge breath when it all was over. We will know in 2 weeks how many cells and the activity of the cells in his system. That is also the time that his platelets, white blood cells and red blood cells will be at their lowest point and the most dangerous time for potential infections and bleeding. Pray for active ARSA enzymes in the cells, a good transfer and a good quantity for Giovanni for longterm enzyme activity. Also pray of his health in coming weeks. The healthier we can keep him the better his chances of getting out by the 45 days (that is the average expected stay). I am shooting for less :) so we can be back together as a family.

I woke up in a myriad of emotions today. I am so overwhelmingly thrilled to wake up next to this sweet, smiling boy with this sing-song noises and sweet face. I really can't believe how well he is handling 3 noisy, foreign language speaking nurses coming in at 6:45am and waking him up. I had a dream overnight with Liviana walking, running and playing like she used to. I have been a mess of tears and emotions this morning over Liviana. The reality of treatment for one child that another can't have has always been in my mind but this morning it has been harder to process. I get lost in the daydreams remembering Liviana as she was prior to November 17th when she stopped walking. I remember when she used to go to the door where Aria and Miles were playing without her and shout, "Daddy's Home" so they would leave the room to go await daddy at the door and she would sit down and play with their toys. Of course, Daddy wasn't home but she knew that would get them out of the room. I remember when I would start getting a bath ready she would run to them and say, "Guys, Bath..."Guys, Bath", running back and forth with excitement. I remember she was always under my feet in the kitchen and I was constantly backing into her. I would also be standing at the counter and feel her little arms wrapping around my leg and look down and see that amazing face looking up at me. I remember her helping me with Giovanni's diaper changes and wanting to help me dress him. It is all to much to sit and think about and that is why I often don't. If I had spent these last 2 months focused on all of these times I would seriously be a basket case right now. God...how I MISS Liviana so much. I don't mean that to sound like she is not here anymore but I miss seeing her live freely. She still lights up a room and brings me tremendous joy but it is hard to not miss those moments from the past. Why did I have to face the fear of losing her at birth, see her fight and succeed against her CDH only to have this happen to her? It seems so cruel and unfair to me. She doesn't deserve this. Why could she not have been diagnosed with the MLD before she was showing symptoms so she could get this treatment. How amazing would that have been for her? Damn, damn, damn....I must stop with the dwelling on the past. It isn't healthy and I need to be able to focus on Giovanni while I am here with him at the hospital.

I am going to head home to be with the kids and Brad today. Tarah will come join Giovanni again for a few hours. I do not know who gets more excited about that, G or Tarah. Liviana really LOVES when I put her in the sling so I am planning on carrying her in the sling most of the time I am home this afternoon. It makes her SO happy and she just melts into me with comfort. I don't see that comfort in her most of the time so it is good to know she gets so much physically and emotionally out of me carrying her in the sling. My sweet, sweet, Liviana. Why, why, why?

Thank you all for continuing to follow our journey here in Milan. It is difficult to go through this process with our children and even more difficult to do it so far away from home in a foreign country. I can't tell you all how much you mean to us.

Don't take for granted a single moment with your children!

Hug Your Babies!

Amy

Day 6 of Treatment : BIG DAY

2011-02-18T03:35:00.002-06:00

Today is the day! Giovanni has finished chemotherapy and will have his cells transplanted back into him with the corrected ARSA enzyme around 7pm (12pm CDT). He has had many people stopping in to see him on his big day asking him if he is "ready for his cells". He has no idea what is going on but I am sure when the room is full tonight (Which it will be) that he will be hamming it up like he always does without a care in the world accept why he can't go walking around and why he can't have chocolate.

I am very anxious with anticipation. That anxiousness is combined with anxiousness over missing my other kids, the life in "the box" and missing being a family. I had a chance to head home for a visit for a few hours last night. It was the first time I left the hospital since Sunday when we arrived and the first time I left the room since Monday. It was a really strange feeling arriving at the new flat. I felt like a visitor, I didn't know where anything was, I didn't have enough time to just relax as the kids and I played hide and seek and then I had to get things gathered up to take back and then try to get Livi to bed (she wasn't having it). Aria sat in the corner of the kitchen and started crying saying she didn't want me to leave and that she missed Giovanni too. It was heart wrenching. I don't think in her 6 years she has ever cried over something like that...missing someone, emotional pain. It was really hard to see and even harder that I could not do anything to make it all go away. This process scares me so much for what it is doing to and for Giovanni but also what it is doing to our family. I feel it pulling us apart but I suspect that I have that impression more since I am the one on the outside. The flat is so nice and I want anything for his treatment to be over and for Giovanni and I to be there with everyone else.

Gosh...I did not mean for the post to take that turn. It was supposed to be a celebration. We learned some lessons last night with my visit home. It was my first time riding the subway and electric train. When I headed back I found out that the subway does not go into the hospital late at night so I would have to take a bus part of the way. When Tarah left she was unable to find a bus and ended up being taken home by our new friend, Marcus. He and his wife Lisa have been amazing to us since we met them last week. They know what it is like to travel to foreign countries with children and they had things to get rid of since they will be leaving Italy in the summer and heading for Angola. It helped fill some gaps in our needs at the new apartment.

My G man is now napping. He looks very different. His eyes look sunken with dark circles underneath. His skin is more pale. I am with him all the time so I do not see the change as much until I look on photos I have taken since we have been here. It is very startling. He is still Bellissimo of course but he has definitely changed. He still has his hair...his mullet or skullet. He has the same hair growth pattern as Aria (and the same light hair color) where most of his hair has grown on the back of his head with much lighter growth on top. I do not know if he will lose his hair (the first family through treatment told us their son did). He has worked a whole year to grow the little amount he has so let's hope it stays put. It even looks like it will maybe be curly too...a curly headed, blonde haired, blue eyed boy :).

Many people have asked about sending things for us and the kids. I LOVE that you all are so kind and thinking of us but the mail receipt system here leaves something to be desired. My friend Kelly mailed me some vitamins for the kids, shampoo and conditioner for me and some hair oil for Livi's curls. She sent it on January 25th and we still don't have it as it is currently being held at the post office awaiting the 3 page affidavit that I had to complete with Miriam. They identified the products as "healthcare" and want to make sure I will not sell it. Really, if I was going to sell it I would probably have more sent to me than one of each item, don't you think? They also tax our packages and we will likely pay $30-$50 to get the box (I can't figure out their tax system). We had to pay $160 on the computer that arrived a few weeks ago so who knows. My worry is that we won't get things quickly enough for the kids to have them while we are here. The UPS was quick but obviously more expensive. If you do send something do tracking on the package. Aria's class mailed her Valentine's at the beginning of February and I am hoping they will arrive. It would make her day. So...if you want to brave the Italian postal service our new address is:
Sig. Price
Via Cairoli, 60
Vimodrone, Milano Italy 20090

I think I may doze off for a bit while we await lunch to arrive. I will update tomorrow on how the cell infusion went. At noon CDT be thinking of Giovanni and praying that this is the miracle he needs to live a long life.

Hug Your Babies!

Amy

Treatment Day 4

2011-02-16T06:27:00.003-06:00

I am finally back among the wired and I apologize for being late updating. Internet connections are harder to come by around here compared to the states. I actually got connected last night around 8pm but honestly didn't have the energy to update once I got Giovanni to sleep. Something told me to get rest because it would be a long night, which it was.

We entered the hospital on Sunday at 3pm. We were told we were starting in the old ward and would move to the new ward sometime this week. The room isn't as bad as I was expecting. It has two large windows which is all I need to feel a little sanity. There is also an exercise bike...I haven't had the time for a workout yet though. Giovanni was immediately started on some medications and a breathing treatment to prepare him for the chemotherapy that would start the next evening. He also had to endure having a needle finally put into the box in his chest from his first surgery. Bless his sweet little heart. It isn't a thin little needle and even with the local anesthesia cream they put on him it was painful. That has ended up being the first of 4 catheter procedures since he was admitted.

That evening they brought my dinner but nothing for Giovanni. I found this odd so I asked our nurse, who spoke fairly decent English. He said it would be later. Later...still nothing so I asked Laura, one of our doctors...she said it would be later...still nothing later again. Giovanni was not supposed to have any food after 8am and I wanted to make sure he had a good dinner since I know a breakfast is hard to come by in here. Finally, I called our nurse, "Mas" in and said it was about his bedtime and I needed to know if his dinner was coming soon. He said he would be back and came back 20 minutes later with a bottle of formula/meal replacement-ish thing. What the heck is that? He asked me if I had a bottle top for it? Ha...no! He eats real food and he NEEDS real food. This is a strapping, 13 month, 25lb. boy who eats pasta, pizza, steak, ham...you name it, he eats it. He also feeds himself with a fork and spoon. A bottle of stuff isn't going to work. He came back a few minutes later with the doctor on for the night and had a jar of baby food. Again, what the heck? He has never had baby food and if he had he is 13 months old now and needs real food. They apologized and said that it was too late to get any other meal for him, would it be ok for tonight. So, I fed him some pureed stuff. It wasn't even thick consistency like the higher numbered baby food jars at home...it was like thick broth. He was starving though so he ate it. He nursed like a mad man all night long and when morning came I asked at 7am for his meal (since the night before they assured me the food issue was taken care of and they have breakfast, lunch and dinner here) and I was told he could not have any despite it being an hour from his food cut off. I had some crackers and other things In my bag and fed him what I could. The language barrier is really quite the challenge. That afternoon as we waited for his surgery time, at 2pm, to approach he was beginning to scream like a starving lunatic. He was so, so hungry and I continued to nurse him until noon (and once around 1pm because he was hysterical) but he wanted a meal. I also at this time was starving because they didn't bring my meal for lunch. I can't leave the room so I am not sure how they thought I would eat for the day and the shredded carrots with cheese they gave me the night before somehow wasn't sustaining me.

I took him down to surgery and stayed with him until he was anesthetized. He looks like such an angel and so tiny on the big, adult sized table. They harvested more stem cells, performed a skin biopsy on his arm and a spinal tap. These are the cells that will are currently in the lab having the ARSA enzyme correction made for his reinfusion on Friday...these cells are the potential life savers for our sweet boy. He came back from surgery angry (likely still hungry), puffy and tired. I nursed him and he settled a bit and slept for a while. He was to begin his chemotherapy in a few hours. I have felt so anxious about this entire treatment, as I have expressed. It had gotten to the point that I had been so anxious waiting that I just wanted them to get it over with at this point so I could tackle the experience head on rather than living in the horror of it all in my mind. He needed a decent sized blood transfusion so that was done first through an IV in his foot that was placed during surgery. They would be taking Bulsafun (the chemotherapy) every measurements in the blood after each administration to make sure levels were where they were supposed to be. It could not be done from the same port as the administration obviously so the extra IV was needed. He was also on continous monitoring for heart rate and respiration. This machine was on the opposite side as the blood and chemo and I was holding him in the middle on the bed, trapped under a bunch of wires. I had to be "freed" by Brad and Mas :).

So...finally, the chemotherapy started. By this time he was up playing and laughing, walking about in his bed. It was a great sign. They give him an anti-nausea medication and he didn't seem to have any issues at all. As with everything, he was taking the Bulsafun like a champ. Dinner arrives ***sigh***...his meal is all pureed food. W...T...H? I had a conversation during the day with the nurses about his diet AGAIN before he went into surgery. I had, by that afternoon described, no less than 3 times what he eats and gave examples when asked. I didn't know how else to say, HE EATS NORMAL FOOD LIKE YOU OR I other than saying just that. I gave him some of my food and yogurt we bought (I am OD'ing him on yogurt for the probiotic benefits). It kept him happy. I ordered the meals for Tuesday off of the sheet so I know he was going to receive a proper meal for lunch and dinner the next day. Brad headed home (Which by the way was still the hotel...they moved moving day...again...to today). Giovanni had a busy room overnight but overall slept well and didn't seem to have any issues from chemo at that point.

The morning of Day 3 in the hospital arrives with my "breakfast"...none for him, so I shared and gave him more yogurt. I use the term breakfast lightly....it is some graham cracker like crackers, some toast like crackers and some jelly and honey. It will do, especially given I don't get much activity while in the room. He is still doing really well with the chemotherapy. I am so, so relieved. The day is fairly uneventful. Daddy vists for a while and we had lunch. He was happy to eat real food and everyone who came in the room seemed so surprised to see him sitting there happily eating pasta, fish, some zucchini and pear sauce. I guess at 13 months old he would be eating out of a jar around here. By lunch time I am seeing a different looking Giovanni. His skin tone is pale, he has darkish-red circles under his eyes. Now he looks like he is having Chemotherapy. After lunch he takes a 3 hour nap while I piddle around the room picking up, organizing our stuff and playing Angry Birds on my phone (Thank you, thank you to the creator of Angry Birds). I finally decided to wake him up because he never sleeps that long. Around 4pm the new nurse came in (I have yet to figure out shift changes since they vary and they don't tell you they are coming or going until someone new comes in) and asked if he had been screaming a lot. I said "No" and she said that was a common side effect of the anti-seizure medication he was on. No more than 30 minutes later the screaming started. One of our poor doctors, Laura sat with him the few minutes I was out in the hall talking to Dr. Biffi because she can't be near the chemo since she is pregnant. I could hear Giovanni screaming the entire time. He was in absolute hysterics. It broke my heart. He promptly fell asleep, woke to eat and then passed out for the night. The night was ROUGH. Reader's Digest Version is multiple attempts to replace blown IV from foot in both arms...both times failed. That lasted from about 1am to 3am. At 4:30am they had to replace the port on the chest catheter. That lasted about 45 minutes. The cries are so painful to hear.

Today was a good day. His mood was much better. I spend the entire day entertaining him in the space of his bed or in the chair next to his bed. It truly feels more exhausting than taking care of 4 kids. He has a line running from his chest catheter that splits off to two different machines. One of my jobs is to make sure he doesn't pull that out. I can only compare it to the Bull in the China Shop. I have to keep the giant bull from breaking the china and it is an exhausting task. I feel like a crazy anxious person chasing lines while still trying to play with him and keep him happy. I really am so proud of how he is doing. He is so strong and while I know that the next few weeks may be rough as his counts dip and he receives the infusion of new cells I can tell he is so strong and not about to stay down.

It is after 9pm here and I am so tired from last night. I also am feeling quite a bit of sadness as Brad, the kids and Tarah were finally able to move today. I called a few times to see how it was going and the kids sounded SO happy. I wish Giovanni and I could be there with them. Brad said Aria has had a hard time with Giovanni being gone. She misses me too but that is a different missing than her baby brother she adores. She knows the seriousness of all that is going on and I know that weighs much heavier on her than a 6 year old should ever take on. It was nice to hear such joy in her voice. I hate not being with Liviana. Each day is so precious with the kids but her in particular. I saw her go from walking to not walking in one day and I am terrified of something dramatic happening again and me not being there. I talk to her on the phone and her voice is pure heaven to hear...so sweet and soft.

I have not been home, or left this room accept for the 20 minutes after I took G down to surgery since Sunday...tomorrow is Thursday. I am growing weary of the "box" as the father of the first patient to undergo the gene therapy from Lebanon calls it (more on them in upcoming posts). That is scary since I have a loooong way to go. It has been raining here for 3 straight days...our punishment for all of the, "It feels like Spring here" posts. That adds to the feeling of confinement...that and the fact that all the TV channels are in Italian so I keep it on the MTV, all music channel and hear the SAME songs 10 times a day. I think I will escape for a bit tomorrow evening after chemo is complete to see the kids and let Brad or Tarah relieve me. I know Tarah misses G terribly too. Brad is nursing a broken foot. A combination of swelling that happened over the past couple of weeks because of his blown out shoes and a bad step last night. As usual, one of the nurses on our therapy gave him some random pills to take. She wanted to take him to xray but he knew he had to move today. He moved through it all with the swelling and pain :(.

I have much more to say but I feel like Giovanni is like a newborn...sleep when he sleeps....otherwise I am the walking dead.

Thank you for all of the continued support on the scary and hopeful road.

Hug Your Babies!

Amy

Reality Sets In

2011-02-12T02:32:00.001-06:00

I want to run, with Giovanni wrapped in my arms...far, far away from all of this. This week was hard on him and us. It is very hard to see him upset, getting blood draws, hearing tests, eye tests, eye exams, more blood draws, nerve conduction tests, etc, and yet still knowing the worst was yet to come. He passed all of the tests with flying colors and they commented that, "He is very smart for his age, it is very impressive". Honestly, it is little consulation. We knew that he wasn't behind on any milestones, his motor skills are great, he is cogntively fabulous...so was Liviana at the same age though. The decline came after the age of 2 years. That gives Giovanni an estimated year before the same happens to him. It is horrific to even think about as I look at this simply adorable, rambunctious, active boy.

Following his last tests on Friday, Brad and I had to go through a training on the transplant ward. I felt sick to my stomach as she described the timeline of his treatment, when his chemotherapy would start, what side effects he may experience, the fact that we will be in full masks, hats and gowns at all times...for 45 days. That doesn't bother me for myself, but rather for Giovanni. He will be nurtured by masked, gowned mom and dad. It seems so distant and impersonal which is not the way we live our lives obviously. I find myself obsessing over how this is all psychologicially impacting him. His demeanor changes when we arrive at the hospital. He withdraws a bit, waiting to see what will be done to him. It breaks my heart to the core.

I almost lost it emotionally during the training when I was told I could not nurse him anymore. Both Brad and I thought we misunderstood her and I asked for clairification, "Yes, you will have to stop nursing him". WTH? Ummmm, NO, I will not. I of course put together words better than that and said that it basically was not an option for him or me. Not only does he get important nourishment from it (yes, even at the age of 1) but it provides him important comfort that he absolutely is going to need at this traumatic time in his life. How could I traumatizse him with forcibly weaning him at the same time he is beginning treatments that he doesn't for a minute understand why they are happening to him? As I type it, the thought of it makes me sick to my stomach. I asked that the Doctor be called and the issue be discussed. In the end I was phoned last night and they said that I could continue to nurse him, we would have to be aware of potential illness in me though so we can keep him well...ignorning that me nursing him if I am ill is the best way to keep him healthy. They said the concern is potential bacteria on my skin that is normally not a concern but may be with his lowered immune system. I honestly think it has more to do with the lack of control they have on the nursing....the quantity, the content, etc. The same issue comes up in NICU's when they make mothers pump and use bottle so they can see exactly how much is going in. Luckily, this was never an issue with Liviana was in the NICU. They used the diapers to guide their knowledge on how much she was getting. They apparently faced a mother who refused to stop nursing with one of their other gene therapy transplants. They told me that they had meetings with her and she continued to nurse her son. I could hug her for setting the stage for me and for mother's after me. To refuse a child that noursishment and nurturing at this time is counterintuitive.

The timeline for now is that today, is our Valentines Day with the kids since Monday is surgery day. Giovanni will be admitted to the hospital transplant ward at 3pm on Sunday, the 13th. He will have surgery at 2pm on Monday, February 14th to collect additional cells for the treatment, he will also have a small skin biopsy and a spinal tap. At 6pm that night he will begin his first chemotherapy dose. It is so hard for me to face. Here I had him at home, have kept him mostly in a natural home, with little to no chemicals surrounding him, natural and/or organic foods and now he is going to have chemotherapy. I know the process is horrific for any parent to face with their child but I think some of my issues with chemicals, our bodies and toxins makes me a little extra anxious about the whole process. His chemotherapy will be administered every 4 hours through Thurday the 17th. The new cells with the corrected ARSA enzyme will be infused into him on Friday at 7pm. That is when we will be correcting what it is that would eventually kill him. God, please let this work, please let this work. Please let us keep him healthy and happy for a lifetime...a normal lifetime.

His toys must be plastic (his favorite toys are wood of course), we must have a set of clothes for only the room for ourselves, we cannot be there together so Brad I will only see each other in gowns, in passing for at least 45 days. The kids can't see him at all (that is a change from what we previously were told and I will be disucssing it with them more), his clothes have to be washed and bagged seperately i in special cleaner in outfit sets. He can't have paper or crayons and we should avoid paper in the room also. Life as we know it is not only changed for this hospitalization but changed forever. His life is changed forever.
Brad and I sat after the training and I cried. I talked to him about how I was screaming in my own head, "let's not do this, let's not do this to him". We both know that if we don't take the chance to save his life it will be letting not only him down but Liviana, Aria and Miles. We would always wonder and it would surely consume us. It already is all consuming to know that we could have gotten help for Liviana if doctors would have listened when we originally contacted them.

Since things can't be easy, we are also scheduled to move on Monday, the day he has his surgery. I HATE that I won't be with the kids to move and help get them settled, I HATE that Giovanni won't even know we moved and know the new place until he comes home in a month in a half or so. I HATE the instability of it all. I want the kids to be happy and not feel the same instability and I thank Tarah and Brad for helping them with all of that since I will not be around as much. How the heck will we manage this all? Rhetorical of course.

Today we will try to be normal and play with Giovanni and discuss how this all will work and change us. Tomorrow we will meet some new friends to feed the ducks and play at the park. We saw her yesterday, with her Whole Foods bag...a dead give away...and one of her adorable blond haired daughters. She is from Canada and they have lived here for a year for her husband's work and are quite near by to where we live now. We are excited to have someone to talk to who doesn't think we are freezing our children by not having them in full winter gear in 56 degree weather :).

Finances are slim...very slim. We get reimbursed for some things but have to wait for that to all go through each time. The expenses beyond what we get reimbursed for are numerous. The exchange rate stinks for us here and we don't get reimbursed at our dollar but rather at the euro. It is a massive financial challenge to try to save a child. How sad is that? There should be funds out there for any parent to get life-saving treatment for children without worry for lost income. It is currently not an option for both of us not to be here. They require both parents to be here during the hosptialization since one of us must be in the room 24 hours a day. We had the painful discussion about whether Brad should go back after G is out of the hosptial and on outpatient treatment. It would rip his heart out to be away from Giovanni at such a crucial time in this journey and of course, to be away from the other kids and Liviana when she is still with us enough mentally. It all is cause for pause, and stress and trying to figure out what to do.

Many have asked for our address and we will have our own now...and hopefully things will make it to us. It will be:
Sig. Price
Via Cairoli, 60
Vimodrone, Milano, Italy 20090

The kids would love packages from home being so far away from what they know.

We have a Valentines Day to begin. Thank you all for your continued support. I will be able to have the computer in the room with Giovanni so you will here from me more regularly. I plan to start numbering the posts with what day he is into his treatment.

Hug Your Babies!

Amy

Apprehension, Transition and Photos

2011-02-07T13:21:00.004-06:00

It is Monday and this week already had me feeling apprehensive and anxious. Today was just the start and I am labeling Sunday, the 13th, as "D" Day. That is the day Giovanni will be admitted to the hospital and remain there for approximately 45 days (depending on his condition). *Sigh*...Breathe In, Breathe Out.

Today was a series of appointments that started at 9:30am. We got home around 5pm. All of the tests being done this week are so they have a baseline pre-treatment. We started the morning with an abdominal ultrasound. He was not a fan. Following that, he had his dressing changed from his last surgery and they used a scalpel to remove the stitches. REALLY not a fan of that either. It truly made me sick to my stomach to see the look on his face. It was a questioning fear type of look....a, "Mommy, why" kind of look. It adds to the emotions I have about all of this. It is very hard.

We then were instructed that he had to stay away awake and have a full belly prior to his 2pm EEG. That gave us a couple of hours so we walked over to look at the little "zoo" at the hospital and then to eat lunch. He was SO tired. He woke up this morning at 6:30am and had only napped about 15 minutes on the walk over to the hospital. I hated keeping him awake but he enjoyed the time walking around on the hospital grounds (a pavillion area where everyone sits), watching the pigeons and trying to feed them (trying because he preferred to keep the crackers for himself. He fell asleep VERY quickly in the MRI as soon as I started feeding him but I had to wake him up after about 45 minutes so they could complete the last part of the test. He wasn't happy again. As soon as we left to head to his final two tests of the day he fell asleep in my arms again. We made our way through the hospital halls with Laura. It was an absolute maze. I had no idea on the property where we were since we were underground and had seemingly walked a couple of blocks. It is these moments that I have that, "What the hell am I doing here" feeling. It all happened so fast and here we find ourselves in Italy walking the halls of a hospital taking our sweet boy to tests after tests.

He had a very short dental examination followed by a echocardiogram. He of course, passed all tests with flying colors.

The week holds many more. Tomorrow morning we take him bright and early for an MRI. They use full sedation which I hate but it has to be better than with Liviana when she woke up half way through and started screaming. He then has psychological evaluations, motor skill evaluations, nerve conduction tests and I forget what else this week. Wednesday Liviana will have another Physical Therapy appointment. I really adore her Physical Therapist. She is a sweet, compassionate woman who has so much affection and caring for Liviana and Giovanni.

In the middle of it all we were "supposed" to origially move on Monday and it changed to Thursday and now it may be Friday or sometime thereafter. It better be before Sunday because after that I won't be around as much because of Giovanni's hospitalization and I really wanted to have that experience with the kids. They are excited but going through a, "I miss Omaha, when can we go home" phase so I wanted to make the transition fun for them and help make sure they feel comfortable and at home in the new place. I am struggling with them being away from school and their friends. I haven't done a good job keeping them up with their classmates and sending things to them. I don't want anyone to forget Aria and Miles. Tarah is doing a great job keeping them up on thier learning and lessons. They are very smart and so excited to learn new things. It is the friends and social interaction part they are missing that worries me. Aria met a little boy at the Pizzeria tonight when she went with Brad to get dinner. She was so excited that he came over and talked to her and that he was only a year old than her. I have been told their are kids around our new place so I am hoping she will get a chance to play with others close to her age.

I have more to share about the new place and the experience Brad and I had going to the town and another nearby. I will probably be doing more blogging while Giovanni is in the hospital so I will share more of these little stories.

I feel like this post is rather whiney and I apologize. I think I am in a mood tonight so I will wrap up this post by sharing some photos since we have been here.

Thank you all for your continued support. We truly need each and every bit of it. Again , I have not responded to all the messages I have been sent but will try to get through them in coming weeks. I just don't get on the computer much and when I do it is like a drive-by computer session.

I took Giovanni and Liviana out for photos yesterday. Tarah was my trusty assistant as we tried to capture photos of the two to commemorate their 1st and 3rd birthdays and their affection for one another. Liviana adores her "G-Mawny" and Giovanni has discovered that his big sis is pretty cool to hang out with and play games. Here are few from their photos. I hope to take them out again in some of the fabulous Milano streets someday soon. I hoped to do it before he went into the hospital but I am not sure if that will happen now. The logistics without a vehicle is a challenge and there is already a jam packed week ahead of us. These were taken on the outskirts of a very large park nearby.

Did you see her standing? She is such a strong, amazing little girl. Never Gives Up! Her posture is worrying me a bit and she has good and bad times throughout the day with how straight she sits. She was taking a nap in the stroller when we got to the location for the photos so she was a little "slumpy" in the photos. Still so beautiful. Giovanni is a crack up. He ran towards me many times so I have walking photos too.

These photos are from D'uomo. I shared information about the church a few posts ago. They had two areas for lighting candles for prayer intentions. The kids wanted to light candles for Liviana and Giovanni. It was a special moment for all.

These below are from the Pasticceria by our hotel. The lady makes all of the cakes, pastries and chocolate treats herself. She is SO sweet and looks so tired from all of her baking. The entire bottom row was all homemade pasta. Go figure I am more intrigued by the pasta. The third photo is of some of her sweet treats that I brought home for the kids one night.

This is a random shot from an outing Aria and I took around the area. I have more shots of her I need to get up too.

This is a little grouping of shots from Giovanni's room from the first hospital stay in the party floor (See previous post). He looked so small in such a giant room. It seemed to be a metaphor for all we are facing. The tub photo is from our hotel room.

This last shot is from our room. Liviana and Giovanni didn't have a place to sit to eat since we got here. Livi sat on the "couch" to eat and Giovanni was on our laps or walking around while eating. It was a disaster for both and I noticed Giovanni wasn't eating as much compared to when he was in a high chair. We got these seats that attach to the table so we could take them with us when we eat out since all places don't have child seats. They were both so happy and they and ate and ate...as you can see...everyone else was done and they were still going. We just thought their little legs looked so cute dangling down :).

That is all for now. I am hoping to feel a little renewed tomorrow after Giovanni's MRI. Brad and I have to go to Ikea to get stuff for our new apartment. It is supposed to be furnished but is lacking all kitchen stuff, two beds, a dining table, linens, towels, etc. They told us they would reimburse us to a certain amount for the things we need. I know, it is torture going to Ikea in Milan but we will do what we have to do (my joke for the day).

Hug Your Babies!

Amy

100th Post

2011-02-02T02:36:00.004-06:00

As I was getting ready to post I saw that this will be the 100th post on Liviana's blog. Who knew when we got pregnant with our 3rd child in the spring of 2007 that we would take this journey that has led us from Wichita to Omaha and now to Milan. It has been a path filled with love, fight, fear, survival, joy and a thriving. It is still hard for me to look at her knowing what she has survived already and try to understand why she has to go through this now. That same spirit that fought so hard against her CDH still shines through in her today. She still will get on and off of her "couch" (it is a cot that we have made our couch in our hotel room) and just stand, holding herself up. She knows she can't walk and she knows she can't stand up straight or without holding onto something but she keeps trying and trying and trying. She knows we need that. She knows that seeing her strength gives us strength.

I find myself just staring at her sometimes. She is such a beautiful child. She of course has an amazing beauty inside but she is truly stunning on the outside too. She is exactly what you would think of an angel looking like. She has the most amazing skin tone, beatiful blue eyes and eyelashes that little kids have walked up to touch before, they are so long and thick. Her dark curly hair is so dainty and perfect for her face. I love our sweet angel so much and I would give anything to see her running, walking and playing with her brothers and sisters.

I snapped a few shots when she got out of the bath one day. I adore and love her so much that it hurts.

I am not calibrated here and my monitor obviously just traveled from Omaha to Italy so pardon if my color is horribly off on these.

Love to our angel on earth.

Hug Your Babies! You NEVER know what will happen.

Breathe In...Breathe Out

2011-01-28T13:24:00.006-06:00

That is my new mantra. Breathe in, Breathe out. If I stopped breathing everytime I got too stressed or concerned I would not be doing too well right now.

Giovanni is "home" from the hospital. You all would have been subjected to my constant ramblings while we were there but the hospital building we were in did not have Wi-Fi (I am hoping that the new building for the 6 week stay will). There were some bumpy moments and interesting times navigating a foreign hospital system and mostly unknown language but Giovanni is doing great and hopefully can enjoy the next 17 days before he begins his 45 day difficult hospital stay.

This surgery was to have a central line placed for Giovanni as well as one round of bone marrow cell collection. The central line that we decided to use for Giovanni is superficial and a box that is placed under the skin so there is no risk of him pulling it out since it will be in for so long.

We went to the hospital Wednesday afternoon so he could have another blood draw (10 vials!) and Brad, Aria, Miles and I could also have blood draws so a complete family gene sequencing could be done. Brad and I both did draws for this in Omaha but as of last week that blood had not yet arrived here. We were both worried about how Aria and Miles would do since neither have had blood draws before. They did awesome and despite us trying to distract both of them from paying attention during the process they both wanted to watch. I swear Aria will go into the medical field when she is older. Giovanni was admitted to the hospital a few hours later. That is when the interesting part started.

It is an eye opener to realize how essentially, spoiled we are as American's. I want to preface this by saying the doctors and nurses are WONDERFUL. We feel in very good hands when it comes to medical knowledge and expertise. They are brilliant doctors and warm, kind people that makes the process easier. I am a very involved person when it comes to medical decisions and processes and you certainly know I have strong trust in this team when there is a language barrier involved and I can't know every little thing that is being said. All of that said, it is a very different experience in the hospital here than at home. The first thing I noticed is that there was no soap in the bathroom. I don't mean, shower soap or extra soap, I mean NONE. There wasn't even a dispenser on the wall. There also were not any towels so when Giovanni had a Betadine bath prior to surgery all we had to wrap him in was a clean sheet that hadn't been put on the bed yet (you have to change the bedding yourself too). You have to pay for television...5 Euro a day to start. A guy came around shortly after we checked in with a machine to turn on the TV and take money for the viewing. I said I would do just the one day so I could check to see if it had any American channels like our hotel does and he said I could not do that, I had to do at least the 3 day @ 10 Euro. Of course...no American channels so I put it on MTV for music since they actually play music videos on their MTV. I think the most obvious difference was the noise level. We were on the Pediatric floor and most the kids on the floor were not "sick" with an infection or illness but rather diabetes or other diseases being managed by medical staff. So, they were not laid up in bed but rather running the halls, screaming, playing, basically sounded like they were having a party. It wasn't just in the middle of the day though but this "party" went on until 10:15ish at night and after that there were still random outburst of noise in the halls. We had a roomie (who were the nicest people despite our complete language barrier) but they were clearly night owls who did not turn out the light and TV until 11:45pm. The TV was shared but mostly on our side. The lights lit up the entire room so when their light was on it was like our lights were on. I am SO glad that Giovanni passed out at 7:30 the first night and I didn't have any issues with him waking up and not going back to sleep given the bright room and noisy surroundings. Our roomies had some guests arrive at 10pm and stay for about half an hour. There were no whispers or quiet vists as they saw the sleeping baby and mother next to them...it was all very odd to me. As I laid there staring at Giovanni sleeping I was willing him to please stay asleep and screaming, "Be quiet, turn off the lights, go to bed" in my head. It really felt like a twilight zone given the time of night and the fact that we were in a hospital, not a camp. Finally, at 11:45 they turned off the lights and TV and I was able to go to sleep along side Giovanni.

The next morning G was not able to have any food after 8pm and no drink after noon. I figured that breakfast would come in the morning sometime but quickly realized that they didn't serve breakfast when the cart, that pulled up the night before in the hallway calling for people to come get their food didn't arrive. At about 7:15 I headed out with Giovanni to the shops below the hospital hoping to get him something to eat at the supermarket....it was still closed. A cafe/pastry shop had to do and I got him an apple struedal.

Surgery was scheduled for 2pm. They came up to get him and I was able to carry him downstairs to the surgery room with Dr. Biffi and Dr. Larioli (Allesandra and Laura). He was really, really ready for a nap so the timing was good. He knows Laura from seeing her all the time and he let me hand him off without any fussing. It was hard to do for me, nonetheless. Allesandra and I stood, waiting for the elevator. She is pregnant, due at the end of April so she could not be in the room for the line placement since x-ray is used. She is the lead doctor for Giovanni's treatment. She saw I was emotional and told me he would be fine and that it was not too invasive (was not supposed to be at least). I told her it was just hard since he is "healthy" right now and it marks the beginning of this process. She said she knew it was difficult and that it shows we have a lot of trust in molecular biology and science since he isn't showing symptoms yet but we know he has MLD and needs treatment. We got on the elevator and had probably gone down 1 floor when her phone rang. There was an emergency in surgery and they needed the room so they would have to postpone and we would have to go down and get Giovanni. I was happy and relieved yet anxious to have to postpone this process more. When the elevator door opened Laura was standing there holding Giovanni, still dressed in full scrubs, Giovanni laying on her chest comfortably. It helps the process that he comfortable with the them. We headed back upstairs and waited an hour for them to come back for him. This time there were no delays. We were told that it would be about 2 hours. We waited in the room and then decided to run downstairs to the market and a book for me to read since I was without internet. The book store (Librerie) has a tiny shelf of "In original language" books so I picked up a Joyce Carol Oates book to pass the time. The 2 hours quickly turned to 2.5 hours and then into 3 hours. I was very anxious and began pacing the noisy Pediatric halls. Three of our doctors came in to let us know that they did have some issues placing his line because of how small he is and the vein was and they were able to get that done and move onto the cell collection. They were very reassuring though that he was fine. Deeeeep breathing! They said it would be another hour or so. We waited more and an hour passed. I was pacing the halls again about an hour and half later when I saw a large team of our doctors and nurses from the surgery coming down the hall carrying Giovanni. Neither Brad or I were prepared for how he looked. He normally weighs about 24 pounds and he probably was about 40lbs. He looked like a little Michelin man. Allesandra explained to me that they needed to make "surgical room" since the vein and area was so small. My poor baby. He lost a fair amount of blood and his red blood cell count was low so he would receive a red blood cell transfusion as well as be on some pain medication that would wean over the next 24 hours. As they brought him in the room Allesandra was telling them to let me nurse him. He whimpered in a horrible, raspy, deep sound and cried. They handed him to me as they got all of the lines situated and got him hooked up to the oxygen monitor. He was anxious to nurse but seemed to be in so much pain from the intubation. I could not believe how big he was in my arms. His eyes were just little slits. It was like he had been in a prize fight and he didn't win the battle. I could see on Brad's face that he too was taken aback by how he looked. He stepped out of the room while they got everything situated. Allesandra explained everything he was receiving and that the pain medication would be weaned overnight into the next afternoon. Brad returned, the doctors and nurses left and Brad helped me get situated holidng our sweet, jumbo baby on the bed. He fell asleep comfortably laying on my chest. Brad headed home to check on the kids and help get Liviana to bed. The monitors for the blood he was receiving kept beeping. The people who shared a room with us were very concerned about Giovanni. They were really sweet, wonderful people. I could not reach the button to call the nurses so the father of G's roomie went out in the hall to get a nurse. She came in, looked at the machine and the lines and hit the buttom and left. 2 Minutes later it beeped again so the father went out again to get someone. When the doctor on call came in she said, "Mama, you need to push the button to call the nurses when it beeps". I said, "I can't reach the button and I am not going to get up with him in this condition every 2 minutes". She stretched the button over to me and the father told his daughter and wife to help me if I could not get to it when the machines beeped. It continued this way for an hour or so. Nurses in and out of the room, looking at the lines, hitting the silent and heading back out. Finally, a nurse came in and felt around on his IV location and left to get another nurse. They determined that his IV was partially out and that he needed a new one placed. That was really not what he wanted to deal with right now. Off to the room we went for a new IV...poor little guy. His cry was pathetic with his sore throat. They first checked the other arm which is the one he had 10 vials taken from the day before...that vein was no good. They ended up using the back of the hand on the same arm as previous. It was a long process and as I stood there over the table, hugging, kissing and telling him it was okay I really was not feeling well. It is ridiculously HOT in buildings. They have the heat cranked up like it is 20 below zero outside. I had felt like I was starting to get the congestion the kids have had for a couple of weeks and that night, after all of the exhaustion and stress I was starting to feel a bit worse than just a cold. They finished up the process and I carried Giovanni back to the room, nursed him and got him settled in bed. Our roomy was till up and I tried to rest next to Giovanni but I am one who doesn't like to sleep with any light on in a room so a room with full light on really isn't conducive to my sleeping, neither is beeping machines and regular nursing activity. I was really not feeling well at his point and was having regular hot flashes. It felt insanely hot in the room to me. It was now 11:45 and Giovanni woke up crying. I heard the mother next to say something to the girl, who was up drawing and the TV was on. I think she must have told her to go to bed because she got up and turned off the main light and TV and got in bed. The other light, that shined straight onto Giovanni in bed was still on. I think they had a hard time figuring out where the switch was since it was partially on our side. I laid there for a couple of minutes yelling, "turn off the LIGHT" in my head. It doesnt' seem to work well. I heard book pages turning and at this point decided since it was midnight that I wasn't going to be so accomdating anymore so I got up and turned off the light. It was time for her to go to bed in my opinion :). After getting up to turn the light off I laid down at the bottom of the bed feeling really sick at this point. I was shaking, hot, my stomach felt quivery and my head was pounding. This was...not...good. I laid the for a while and texted Brad letting him know that I was pretty sick and worried that I would not be able to take care of Giovanni well enough if he needed to be carried anywhere (if an IV issue came up again, etc). I was so stressed and concerned that I was not in a condition to take the best care of him at a time when he needed me the most. I also knew I needed to be there because he needed to nurse during the night. I went into the bathroom and called Brad and then laid back down on the foot of the bed. I really felt like crying. Now was not the time for me to be sick. It was obvious that I had a fever at this point. Brad showed up about 20 minutes later. He felt my head and I could sense his anxiety about the situation for me and for Giovanni. He went out to the nurses and doctors and came back with two pills they gave him for me. Now THAT would not happen in an American hospital....I am not complaining. They were unidentifiable pills and I am usually not one to take random pills handed out but as my mom said when I told her, "you must have been feeling pretty bad to take those without knowing what they were". Whatever they were my headache was gone in about 1/2 an hour and I finally felt a normal temperature come over me. In the meantime the doctor on duty and teh nurse came back in and began talking to Brad. He went out in the hall with them and they told him that I could not stay because I was sick and could not risk infecting Brad. Ignoring the fact that I would have been most contagious the day before and earlier that day and he had been with me non-stop and ignoring the fact that the best thing for him then would be me nursing him so he gets the antibodies for whatever I have (which was likely what they all had already the previous couple of weeks). I love my husband so much because he said to them, "That isn't going to happen, she won't go anywhere since she will need to take care of him and nurse him in the night". He came back to the room. I think the called Allesandra and they came back in and said I could stay but Brad had to leave since only one person could be there and that I could not sleep in the bed with him but rather on the fold out chair ("bed of torture" as Brad would probably describe it). I was still worried that I would not get well enough but didn't have much of a choice....I wasn't leaving my baby. Brad headed out (it was now about 1:15am). He arrived back in the room about 20 minutes later and was said that the hosptial grounds were all gated off and he couldn't get out anywhere. He was staying regardless of what they said so he settled onto the fold out chair. They saw him there but nobody ever said anything to us. Morning came and Giovanni was off the blood transfusion and only had pain meds that were being weaned down. He was looking less Michelin man-ish and was ready to play as soon as he woke up. They did a blood draw to see if he need more red blood cells and he was great. The doctors came in and said that if he was able to come off the pain meds he could head home around 2pm. Yay! How exciting that after how horrible he looked the night before he would be heading home to his anxiously awaiting brother and sisters. At 2pm we were discharged and will return on Monday for them to remove the bandage over the central line. He is so amazing and strong and I hope he will have that continued strength for the next long hospital stay when he will need it most. Within minutes of being home he was walking around, terrorizing the kids and trying to steal Livi's snack. I could not believe it has been just 24 hours since they brought him back to us looking and sounding so bad.

****I had a completed looong post but lost it all so this is my attempt to retype all that was already typed. I need a glass of Moscato after the frustration of losing all of it I had typed and what better place than where I can buy a bottle for 3 Euros****

The upcoming timeline for Giovanni will include additional testing as well as an MRI to provide baseline. On February 13th he will be readmitted to the hospital and on the 14th he will undergo another small surgery to have more cells harvested and then will begin chemotherapy. I am not looking forward to this one bit. Motherly instinct still tells me to grab him up and run. It is more difficult than I imagined. I kept telling him I was sorry after surgery because I know he doesn't understand why we are doing this to him. I hope, however in the future that he understands and will be living a normal life...I pray every minute for a normal life for him so he can thrive and live the life you always imagine for your children. So...he will be in for 45 straight days and 15-20 of those he will be required to remain in his bed until his blood cells get to a level they need to be to protect him if he falls. I can't tell you how afraid I am for this upcoming hospitalization. It makes this little hospitalization seem like a cake walk. They did tell me that for the next hospitalization we will be in the new part of the hospital that is technologically advanced and we will have just their own doctors and nurses round the clock. No more screaming children, night owl roomates or soapless bathrooms.

Prior to that hospitalization we will also be moving to an apartment (flat). We have been living in two hotel rooms that are joined together and you can imagine with 7 of us it gets a little chaotic. We will have a full kitchen space so I can cook with more than one burner and an oven...yay! The only downside is that it not in the village we are in now so we will have to take the underground to the hospital. It is still in a neighboring village however so I know it will be a short ride. We will miss the little shops, our market, our Farmacia but I know there will be places there too and we will adapt.

Liviana also has an appointment on Monday with the physical therapist and I am hoping that she will receive the walker they ordered for her (did I mention that in my last post)? They had the technician come out and look at her walking and standing as as they concluded in Omaha they are afraid that full leg braces will shift her hips and cause additional issues for her. They instead measured her and selected a stand up walker, like a scooter and will try just lower leg braces that will help her with standing only when she is using the walker. She just lights up when she is walking. She has an amzing fighting spirt and strength. She isn't taking any of this as a sentence for herself. She will continue doing all she can do and more. I had a chance to talk to Allesandra about Liviana while we were in the hospital and she said that Liviana has a fairly slow progressing MLD given her 9 months of onset and where she is with her speech and motor functioning. I so feel blessed to still have her where she is given my research and exposure to other MLD children. I don't take any of the moments with her for granted and the fact that she was still able to say, "I love you" when I was getting her down for nap. I will always try to remember that sweet voice in my head even when I can't hear it in person anymore. I mentioned to Dr. Biffi that Liviana has complete stopped with some of her symptoms like the constant drooling and peripheral nerve symptoms like screaming during diaper changes (she started that clear back in May). She seemed intrigued when I told her that but she said that the change of environment, activity, etc can help keep her neurological system strong. I pray for a miracle...I believe in them and hope for one with her. She is truly an angel living among our family. We will continue doing all we can to keep her strong each day.

There is another family who arrived this week and was signing their mountain of consent forms on Wednesday when we were doing blood work. They appeared to be from the Middle East and the mother and I exchanged knowing glances of our painful journey's before we were ever able to speak to one another. We had a chance to meet them briefly that same afternoon. They are from Egypt...they have 3 children, two of whom have MLD including the little 6 month old guy they have brought to Milan for treatment. Her English is very little but despite that her and I share an understanding as mother's on this journey. We look different, our spirts are changed forever and I swear you can see that in our faces. When I am out and see mothers with chilren Livi or G's age I see something different in them than I see in myself. It is hard to describe....it is a carefree nature, a peace, a knowledge that thier children will be there for years for come. It is a hard difference to describe but I know I am not like them anymore...I am forever changed just as the other mother is changed. I can see the strength and fight in her eyes and I hope she can see that in mine as well.

Gah...I cannot remember what else I had typed on my first post...frustrating. Oh...I am better. I awoke the next morning with nothing more than a nasty cold an congestiong. I think my body was telling me that I was exhausted and stressed and I will try to heed the warning better next time.

I must go now. Brad and I are going to try to spend some time together tonight alone. We want to do things with the kids as much as possible in the next 16 days before Giovanni's hospitalization. It is will be hard on the kids. They missed Giovanni and worried about him terribly on this last hospitalization. That is long time to go without their sweet brother around. They will not be able to see him accept through glass for the 15-20 days until his cell count is where is should be and that will be hard for them. Brad or I must be in the room at all times so our lives are going to be dramatically changed for those 45 days. We will only pass in hospital room and will have to find a way to stay strong together even though we will be apart. I am hoping that I will have internet or I may go mad. I also will be able to post more often rather than these giant novel posts.

My computer was sent from home last week from the wonderful Angie Lauritsen. It is Milan and will be delivered on Monday. You know what that means....photos will be coming your way. I miss having sessions and processing photos. It is cathartic and I can't wait for spring to really set in here so I can try to get out with the kids without a risk of horrible coughing starting. I will always have my camera in hand in the hospital though and have photos of Giovanni from this last stay (prior to surgery). Thank you so much Angie for sending the computer for me!

I also wanted to say Happy Birthday to Jennifer Hendrickson who celebrated her birthday on the 28th. I miss you so much and you are an amazing friend! We could not be doing all of this without you.

That is all for now...I think :). I didn't proof read this and I am sure I left things out on the second go around but I have been on the computer WAY too long. I appreciate you all and those who are following this difficult journey along side us.

Hug Your Babies!

Amy

Illness, Sight-Seeing and Surgery.

2011-01-25T09:04:00.007-06:00

I really hate titling my blog posts. I should have just started titling them as the number of days we have been here to make it easy. This was the best I could come up with....Exciting huh?

We have had lots of coughing going around here. Not that regular old winter cold cough but a nasty, very wet, very loud bronchitis type cough. It started with Aria, then Giovanni, then Liviana and then Miles. Miles is the one who never gets sick and he wasn't able to escape this nastiness. As usual, things hit Liviana harder. She can't catch a break. At first she seemed to be doing well but the night before last she woke up in the middle of the night and scared me to death with what seemed to be straining breath. I felt her abdomen and could tell that she had pulling...I could hear that she had the pulling (I am assuming moms know what I mean by "pulling"...I know CDH moms do). I called them first thing upon waking (this all happened around 4am) and they said to bring her in. Her lungs sounded clear, no temp so they gave us a prescription for some bronchial passage solution to add to the nebulizer they gave me for Giovanni a couple days earlier. We headed back with orders to call if she started running a temp and orders to not have Livi and Giovanni sleeping in the same room (I normally sleep between them). All was well until last night around 10:45 when Liviana woke up....with a temperature. I was frustrated with our thermometer which first read 98.5, then 99.3, then 100.1 all in a matter of 2 minutes. She felt warm so the highest I assumed to be correct. I gave her some Tylenol, did another breathing treatment for her and settled in on the most uncomfortable clot I have ever slept on with her for the night. She slept great and woke up seemingling breathing better. She still felt warm but the thermometer was giving me a low reading. I honestly don't trust it at this point. I called Miriam at the hosptial and said to come back in this afternoon. Liviana's spirit has been great, even with the fever. Usually when she is sick she becomes a shell of herself, hardly talking, playing, etc. That hasn't happened this time. In fact, keeping with the way she has been since we got here, she seems better than at home. So, today revealed that she still has clear lungs but definitely a bronchial issue. They did blood work (everyone in Milan can hear when they draw blood from Liviana) to rule out a bacterial infection and the need for antibiotics and she is all clear so we will keep up the breathing treatments and she should be on the mend quickly.

Back tracking now to this past Saturday. We wanted to take the kids somewhere before Giovanni's hospital trips began but had a hard time deciding given we are somewhat transportation challenged here. I feel this anxiety and urgency to take Liviana places to see sites she won't be able to soon experience and see. I also realize it is the simple things that bring the biggest smiles to her face. We thought of going to Genova on the Italian Riveria since it was only a little over an hour and a half away. The trains are reasonable here but staying at a hotel and food, etc just wasn't going to fly. We decided to make a trip down to D'uomo in the center of Milan. It is the location of Santa Maria Church. I read somewhere and now can't find my source, that it is the 3rd largest church in the world but I found another list that had it at 6th or so, so who knows. It was huge, nonetheless and awe inspiring. Really, truly amazing. Being Catholic does make it an extra special experience. I felt like I just walked around with my mouth open in awe the whole time looking ridiculous. I took many photographs and you will have to wait until this weekend when my computer arrives (thank you, thank you, thank you Angie) to see them. I can't wait to show them to you all. Here is a link to an info page on Wikipedia for the church:

After going through the Santa Maria we walked around the shops, ate lunch and soaked up the VERY busy streets of Milan. The kids were exhausted when we were done and we were super lucky to catch a mini-van cab that fit all of us since large vehicles are hard to come by around here.

We are scheduled to be at the hospital at Noon tomorrow for a blood draw for Giovanni prior to his surgery. Aria, Miles, Brad and I will also have blood drawn so complete family gene sequencing can be done. I would be lying if I said I was not the slightest big anxious for Aria and Miles tests. I know that variable onset in families is rare but given what we have been through and the already statistical rarity of it all, I am worried that we will get some devestating news from the tests. Giovanni will then be admitted to the hospital at 2pm and will have surgery Thursday afternoon (the 27th) around 1:30pm. This is surgery just to place his central line but it is always nerve wracking to send a child into surgery. Please pray that all goes well. He should only be in the hospital a couple of days after the surgery. After the surgery I should be getting a timeline for when he will begin his chemotherapy and 6 week hospitalization. I am not looking forward to that and I am a ball of anxiousness, fear and hope all rolled into one.

Gosh, I know I had a ton more to post but I have dinner to get ready and a breathing treatment to do for Liviana.

I am going to try to thank people each post but this is NOT all inclusive everytime. So many people are to be thanked and I am slowly getting through what I can to acknowlege all of you. Thank you so much to Angie Lauritsen, Don and Jodie Lakin, Jenny Peters (your visit meant the world), Fran Krause, Father Bill, Jill Robinson, Jeremy Hamm, Jeanie Hays, Vicki Beauchamp, Mathiesen family, Schleicher Family, Bill and Paula Morse, Jenn Lamb, Missy Thomas, Kelly Langfeldt....Gah..I have a million more to thank but I am doing it off memory right now. You all are angels to us and more importantly to our kids!

I will post from the hospital after Giovanni's surgery and I will have updates, of course on Facebook.

Hug Your Babies!

Amy

Flying Colors

2011-01-18T14:26:00.002-06:00

Ciao! First, our sweet Giovanni turned 1 on the 16th and Liviana turned 3 on the 18th. It is ironic to me that their birthdays are so close together. I always invisioned them being two peas in a pod as they grew up, as Miles and Aria are. I still see that in my mind and it makes me smile. I was reflecting on both of their births in the last couple of days. Liviana of course, was an experience shrouded in fear as the NICU team awaited her arrival because of her Diaphragmatic Hernia. She was so beautiful and delicate with eyelashes a mile long. Her strength at birth is seen in her today. I can't believe all she fought through and all she has to fight through now. Giovanni's birth was peaceful, gentle and just how we imagined for him. He was born, at home, into his daddy's hands. A natural, normal birth with out all of the medical intervention where it was not necesasry. How ironic with all of the natural living I have strived to provide for my kids we are here now, getting ready to put our sweet boy through this experience to save his life. While I live a life of natural approaches and beliefs I certainly, as show with Livana and Giovanni, recognize where medical expertise and knowledge is necessary and I am forever grateful to have it when I can do nothing to save my children from their fate. Happy Birthday to our beautiful babies. You both give us such joy in our lives.

Giovanni has had a few other assessments since my last post including another neurological assessment, physical therapy assessment and a chest x-ray and an EKG. He passed all with flying colors. They spent a good amount of time on his feet again (trying to make me a nervous wreck) but said again he is fine. I almost think they are surprised he is so strong, healthy and normal at 12 months with an infantile onset MLD.

They did an assessment on Liviana for Physical Therapy too and they it was really detailed and promises to be a huge benefit for her. They are going to get her into an orthotics technician to see about getting her some braces for her lower legs, feet to help her stand. They said if the cost is not too much they can cover it but if it is too much we will have to. They only have a certain amount alloted for the care of the affected sibling so let's hope that the braces are within their budget. They also have a walker for her that she LOVED. She tried a couple of walkers in Omaha and she cried and screamed through most of the experience. She had the biggest smile on her face while trying the walker here and did a really great job. We hope to bring it to our hotel with us in the next couple of days so she can try to get around more here. It is kind of crazy but she is doing GREAT since we got here. Dare I say...better. She is much more physically active and seems more mentally sharp. She is getting on and off of the "couch" (it is really a cot that is in the main living area so it is a nice height for her) and she will just stand next to it for a while or sit down, pull herself back up, etc. Brad and I have both forced ourselves to not run over and help her and pick her up. The exercises and movement is good for her. Last night, at midnight Brad and I were sitting out in the living space talking, and suddenly, Liviana comes around the corner crawling. She got off of the bed in the bedroom, crawled out of the room and all the way down a hallway without making a peep. She truly, truly amazes me with her strength and determination. She could have given up, she could easily say, "I can't do it", "it hurts" but instead she tries and tries and tries. I can just imagine her little mind thinking that she wanted to be out here with us and was going to manage it any way she could. She is a true inspriation....I am in awe of her.

Giovanni has a nasty cough...again. All of the kids ended up with it after we arrived. They have me doing saline treatments on him and a saline nebulizer to help clear him up. He needs to be strong and healthy when he goes in to surgery for his central line on the 27th. We will check him into the hospital on the 26th and the surgery will be the 27th. He is a walking machine now. He resembles frankenstein a little because he sticks his arms straight out often and lacks some grace but he is definitely on the go and loving it.

I have found myself feeling very very anxious and tense today. It is likely a combination of Giovanni's upcoming surgery and the realization of all to come after that, a little home sickness, a little stir crazy. I am hoping tomorrow (an appointment free day) brings me some relaxation and peace with all that is in my mind right now.

It is very foggy here in the evenings and mornings...VERY foggy. I am assuming, with my meterologically challenged mind that it has to do with the temps and the proximity to the Alps. It feels oddly peaceful walking in the fog at night. The area around our hotel is usually bustling with activity. We took Aria and Miles to the market tonight for groceries and, since the sun goes down early here, it was aleady dark and foggy on the walk home. It is surreal that we are here but I have to tell you I would give up being in the beautiful Milan, Italy in a heart beat if it meant my babies were healthy.

Aria and Miles are doing great. They like the area we are in because it means running around and saying, "Bonjourno" and seeing people walking dogs and going into little pastry shops. Tarah is working with Aria on he school activities and that keeps everyone busy. Aria mentions home a lot and I can't help but feel bad about taking her away from her friends and school. I know though that she loves her brother SO so much and could not imagine not doing what we are doing in the hopes of saving him. She says to me, literally 5-10 times a day, "Isn't Giovanni just the cutest!" I am worried about how hard it will be on her when he is in the hosptial for 6 weeks. They will not be able to go see him until his counts are up enough after chemo...prior to that it will have to be through glass. I think that will be hard on her but we will make sure to keep everyone in contact any way we can.

I have taken photos since we have been here and I have a laptop to use which is a wonderful lifesaver but It cannot handle my photo size, type, programs etc. We had our desktop all boxed up and ready to take with us and then....we went and left it sitting in the office. I was going to have it here at the hotel room and so I could do photo work while here and use the laptop while we are in the hospital. I am not sure how much it would take to send UPS or FedEx but will probably have to find out soon. I took some super cute photos of Giovanni sitting in the sink after his bath that I am dying to process. I have seen many little streets for photos of the kids too. I PROMISE photos soon.

I can't thank Jennifer Hendrickson enough for all she is doing for us back in Omaha. She is getting our mail, managing our bills and doing all she can for us on the homefront. If you know her, you know she is an angel. If you do not know her, you would be as blessed as us to have her in your life. Thank you from the bottom of our hearts Jennifer.

I can't believe how long this post got. I will leave you with a few of my Americano observations from Italy. Heated towel bars...really something that should have caught on as standard in America. How could you possibly go wrong with a warm towel when you get out of the shower. Eggs....not refrigerated in Italian stores. This doesn't bother me as they seem to be fresh and local which makes me happier than not fresh and trucked from half way across the country, store bought eggs. Push doors, not pull. I am not sure why we had to do this differently in America, as the push is starting to make more sense to me. No High Fructose Corn Syrup makes for happy mamma and a skinnier population :).

That is all for now. I am trying to figure out somewhere we can take the kids for a great experience this weekend before Giovanni begins things next week. Lots to choose from around here.

Thank you all of the continued support. We could not get through all of this without you.

Hug Your Babies!

Amy

Ciao From Italy!

2011-01-14T15:46:00.001-06:00

I am sorry this is so delayed. I have been running on fumes and just hadn't been able to find the time to post. I actually started a post last night and never finished it. I know there are many supportive people who are awaiting an update and it is important for me to share our story with everyone.

We had a somewhat eventful trip here. The chaos started in Chicago when we got to the very crowded gate and they had been paging us for 20 minutes. They checked us in twice but the tickets were still showing not checked in. We stood there with 4 kids, two of which must be held and 6 carry on bags and it was HOT in there. We finally got on the plane and I mentioned to the flight attendant that our seats were all over the place and we had small children that could not be sitting by themselves. She said the flight was not full so we should find seats around the area we were assigned. We did that and started drama when another passenger came over demanding her seat. Given that I was very tired from getting up at 4am that day, hot and emotionally drained I suggested that was fine if she wanted to hold one of our children for the flight. I know...not nice of me but they told us to find seats and we did just that. I was not going to have one of our kids sitting in a spot by themselves and the flight had a TON of empty seats. It all worked out and another flight attendant came by who reminded me of Mr. Pitt from Seinfeld and said, "So you have all just decided to camp out here". At first I thought he was being snotty but I realized he was just being witty when I said we were sorry for the problems and he said, "Yes, I already heard about you all from the Check-In". Ahhhh, what do you expect traveling with 4 young kids, a ton of carry-on and tired adults?

So...flight was great from Chicago to London. It restored my faith in flying. I can handle it when you are on a massive plane where you don't feel and hear every little thing...the nice seats, personal tv's and service didn't hurt though. Liviana could not get comfortable or sleep on the plane. It was a difficult experience for her and she just cried and cried. I wish she could have laid down somewhere to be comfortable but that just wasn't an option. Brad and I rotated holding her and by the time we landed in London she was doing better.

In London we were supposed to get our stroller from the plane since we gate checked it. It, however, wasn't there. Liviana is very hard to carry because her body is so much more rigid and she can't be held normally. Add to that a ton of bags and we needed that stroller that we picked out for her before leaving on our trip. They told Brad to go to baggage claim but since we weren't staying in London we could not go to baggage claim without going through customs. We only had 25 minutes to get from to our plane to Milan and at that point we had missed the flight. I got in line to get on the next flight leaving at 9:30 (original left at 7:05) and the lady took Liviana's passport and went to a back room. She came back out and said that Livi had been flying illegally on an infant ticket and they would not issue her a ticket to Milan unless we paid for her entire flight in a seat. I told them that the flight was booked from the hospital in Milan and that I did not realize it was an infant seat until we checked in at Omaha and they said we would be holding two children. Basically, without $2000 Euros we were not going to get Livi a ticket. It tried to call my contacts in Milan but did not get an answer since it was earlier here. Brad and I tried to get to some pay phones which was impossible with the way Heathrow was set up without going out through Customs or to our gate. Long story short the lady who helped me was very nice and asked if, without prying, she could have more information about the specifics of the medical trip. She took a letter I had from our doctor in Omaha and was gone for about half an hour. She came back and said that she was arranging it all with the travel agency in Milan and she issued Livi a ticket (an infant ticket) and told us to go get on our flight. Overall all of the people in London were so nice.

So...Milan bound, late, dragging, running on major fumes. Customs in Italy was nothing. Handed him our passports, tickets, he stamped them and that was it. Brad went to collect our bags and my bag, our stroller bag (which also had our coats in it) and another bag were missing. They said that they did not show any issues with them in the system and they would let us know if they turned up. I was stuck in my clothes for 3 days. Bags turned up late last night (midnight...we were up and it was a welcomed call) and the last one turned up today, torn up badly but everything there. Many of the kids favorite things were in the last bag and we were very happy to see it and the stroller...and my clothes!

So...onto the important stuff. Giovanni and Liviana have both been to the hospital. We really, really like the doctors and everyone here. They are very kind, personable and have less of a "wall" as you get from American doctors. On the second appointment both Liviana and Giovanni had blood draws for their gene sequencing. For some reason, the 5 vials they drew from Giovanni have not yet made it here so that is slightly delayed. They have postponed his surgery to have his central line placed until the 26th due to a surgeon availability issue. I am somewhat relieved at that because I get to spend that much more time with him before sending him in for this experience that terrifies me so much. At one point the lead doctor was watching Liviana play on the floor and she turned to me and said, "It is very hard to look at her and watch her play and know that I cannot help her too" I could see in her face a real caring and concern...a maternal side that seems to come out in the doctors here. I really can't say enough how nice they all are.

Giovanni had a neurological evaluation to confirm that he was pre-symptomatic. My heart just stopped as the doctor started spending a ton of time on his feet. Looking at them from different angles, flexing them, speaking in Italian to the other doctors. It seemed to last forever and I was so so scared they were going to say there was something that would exclude him from the treatment. After a long conversation between 4 or so doctors in Italian she looked at us and said, "He is fine". Oh thank Goodness! I asked what the issue was with his feet and they said that one flexes more than the other and we will have to watch it as he begins to walk. When we got back to the hotel I was talking to Tarah, our babysitter, and she reminded me that Giovanni does a half crawl, half-walk sometimes with one foot on the ground pushing off and the other in crawl position (does that make sense). The foot he puts on the ground and pushes off with is the foot they said he has more flex in. I am sure that explains it and I will remember to mention that to them on Monday.

Today, Giovanni had a cognitive evaluation. As expected, he is brilliant :). He is just so cute and such a Bello Bambino. They all smile and laugh at him and he just eats.it.up. He is so funny to watch and they told us he did very well and they do not have any concerns in that area either.

Liviana is going to get great care here. We are so, so happy. She will get an evaluation on Monday and Wednesday along with Giovanni for physical therapy and her cognitive evaluation. She is sick again and had a fever this morning. All of the kids accept G seem to have a nasty cold that is lingering. I think it is what Giovanni had last week. Things just hit Livi harder. They gave me their cell numbers and told me to call them day or night this weekend if we are concerned about her. Our first night here Livi and Giovanni woke up at 1am and wanted to play. I brought them out to the "living room" and Livi was wanting to stand, walk holding my hand and was having a great time. It was so wonderful to see her so happy and active. This Italian air will be good for her, I can tell.

Aria and Miles are doing really great. I think they are going a little stir crazy in this small space so we are going to get out tomorrow with all of us to see some sights around us. Aria always says, "It is so beautiful here". She is so sweet. She is picking up on the words and language so quickly and is eager to learn. We will be doing school activities as we can too.

It is amazing to be in Milan even if it is for something so difficult. My observations so far are the clothes are awesome, the groceries are cheap and heaven for a foodie like myself and that I should have taken Italian in HS and College instead of French. I have French in my head all the time and I am impressed with how much I remember. I caught myself saying "oui" to our waitress the other night.

I am really scared about what Giovanni is getting ready to go through. Reading the details of his treatment is very hard. My mother instinct really tells me to snatch him up and run as quickly as I can. You think of treatment as something you do with a sick child, not a healthy, strong, vibrant child. I know we don't have an option though. I can't sit by and wait for his decline and demise. It is just so very hard. He will have to stay in his bed at the hospital for 15-20 days after his 3 day chemotherapy course. This child doesn't stay still for anything. I don't know what else to say...I am just so scared for him to go through all of this and not know why. We are supposed to protect our children and even though that is what we are doing the process to get to that point won't seem like that to him.

He has awakened and needs his momma to love and hold him.

Everyone's support means the world to us. We are trying to stay strong and doing it together. I promise to take photos tomorrow and a video of the kids. I hate to rub this in for my friend and family back home but it is in the 50's here :) but they think it is cold. We have seen people in ear muffs and big puffy coats while we want to skip along the hospital grounds like it is spring (ok, maybe not skip but it definitely feels like spring here).

Thank you, thank you, thank you for supporting us on this journey.

Hug Your Babies!

Eeek...Leaving Tuesday Morning for Italy

2011-01-09T20:42:00.005-06:00

Sorry I had not updated with the details of our trip. We will be flying out on Tuesday morning at 9:55am. This past week is a giant blur and I hope in middle of that blur I have accomplished something in preparation.

We headed to Minneapolis on Wednesday night so we could get our passports Thursday morning. We left Omaha at 8:00pm on Wednesday, got into Minneapolis at 2:30am, got to bed at 4:00am and the alarm went off at 6:50am. Somehow, Brad and I are operating on an energy of "We must do this" so it all worked out well. He drove the entire way there and back on little sleep but many red bulls (for Brad, I have a nursling who wouldn't do well on caffeine). The kids did great on the long amount of time in the car. Liviana had her Calliou videos but she did have a few times of difficulty and irritability. It makes me so sad when she gets so inconsolable. My "normal" mothering isn't enough so I am learning what works for her now vs. before.

Once again we have been so completely overwhelmed by the kindness of strangers. We have been able to relax a bit about finances while we are gone and not worry about how we will keep our home so we have a place to return to....a place to bring our babies home. That is a HUGE weight off our shoulders that adds to what is already a stressful life event. I can never thank all of you enough. I have an inbox full of messages on Facebook and my personal e-mail that I am slowly trying to get through. If you have e-mailed me and not heard back it doesn't mean that your message was not read. I just have not been able to respond to everyone with the travel plans, kids and wrapping up loose ends with my business. You have all touched me so much by your kind words and how you have all kept our family in your thoughts and prayers.

Liviana is having a pretty good week. She is feeling better and well...she has new Calliou movies thanks to the lovely Melissa Morris. She has been eating a ton and that makes me happy since I know we could easily be facing a feeding tube right now. She has those times where we don't know what is wrong or how to console her but we try to give her everything she needs and keep her happy and comfortable.

Giovanni has been battling a nasty cold for a week or so and I ended up putting him on an antibiotic so we could get him well before his treatment begins. He had such a nasty, wet, bronchial cough and I didn't want to risk it turning into something more serious. He is much better already. Other than the unsightly snotty nose he has been up, down and all around and he is WALKING :). He is so proud of himself and so darn CUTE. I will have to get a video of him before we leave (thanks for the video camera Missy :)). He things he is quite funny and has a new, boisterous laugh he lets out when he has done something to amuse himself. He is so big and healthy. I want him to stay that way.

I was scrolling through my old cell phone last night looking for a specific photo for someone. I had to scroll past numerous photos Miles took of the walls, floors and his own face WAY too many times (it is a cute face though). I would also pass photos of Liviana from a few months ago, smiling, walking...the walking was so hard to see. I just stared at them. She can't walk anymore....it is stunning how quickly it all happened. I have had dreams of her walking many times as I shout to everyone around, "Look, she can walk, it is a miracle". It is like a scene out of a movie but for those moments, even though it is just a dream I am sure I am smiling.

It is the little things....don't ever take your child walking for granted. Even if they are meandering too slow, taking their time, skipping...whatever...just let them, love them, admire their own pace, their own interest in taking life slowly and soaking it all in. I myself have gotten frustrated with my children walking too slow, doddeling, when I am in a hurry. I look at the simple act of a 3 year old walking much differently now. Bless her heart. She has handled the overnight (literally) loss of walking with much more grace than most adults ever could. She is the inspiration, not me.

Giovanni has fallen asleep on Brad and I need to get him to bed and keep plugging away at the packing, planning, e-mailing, etc etc. I don't like to fly...have I mentioned that. I don't. I will take comfort in us all being together but I may take a nice stiff drink too :).

A quick set of photos from Minneapolis.

More before we leave on Tuesday morning. I didn't proofread this so I apologize for any horrible errors.

Hug your babies!

Amy

Italy Bound

2011-01-04T21:19:00.002-06:00

The arrangements have gone so fast in the last two days for our trip to Italy. I wanted it all to go quickly because each day that goes by I get more and more anxious that Giovanni is closer to onset and he must be pre-symptomatic for treatment. Goodness it feels like such a whirlwind. We are leaving for Italy on January 11th because they want to begin Giovanni's treatment process on January 18th...Liviana's 3rd birthday. Giovanni will be 1 on January 16th.

This is a copy and paste from Dr. Biffi's e-mail of what Giovanni's treatment will entail: Giovanni will first undergo collection of a small volume of bone marrow (upon puncture of the iliac crest) for safety reasons (it will be stored in case of future need) and positioning of a central catheter. This will require a 3 days stay in the hospital. Thereafter, Giovanni will undergo a disease staging and general health status evaluation that will consist in a number of laboratory and instrumental test to be performed in the following month as outpatient services. Then, approximately one month after the first bone marrow collection, we will begin the treatment. This will require a stay of approximately 6 weeks in the hospital. Thereafter, we will monitor him 2-3 times/week in the outpatient service until we will fill safe to send you all back to the states. Importantly, if we enroll and treat Giovanni, you will be asked to come back to Milano every 3 and then 6 months for clinical evaluations.

I have such an opposing mix of emotions as I read over and plan mentally for Giovanni's treatment. First, I am so hopeful that this will be what he needs to halt this horrible disease in his body. Then, my mind kicks into mama bear mode and I cannot imagine putting my "healthy" child through such an experience. We are supposed to protect our children yet I am going to hand him over for something so painful and difficult for something that isn't even happening to him yet. The other side of me of course knows that the alternative is waiting a year and beginning to see the same rapid decline in him that we have seen in Liviana with the same awful fate much to soon in the future. I also truggle with treatment for one child that the other cannot receive. I know however, if Liviana could make the decision that Giovanni get treatment even though she can't she would not hesitate to say, "Go for it". She ADORES her baby brother. Her face lights up when she says, "G-monny".

We didn't have passports yet so the only way to get them quick enough and guarantee we would have them in time is to go in person to get them. A wonderful client, named Lindsay Murray works at Senator Johanns office and contacted me offering help from their office and she put me in contact with Whitney. What wonderful clients I have! We will be leaving, as a group (I lovingly think of us as the Griswolds) for Minneapolis late tomorrow for an 8:30 am Thursday appointment for our passports. We just can't do anything easy around here.

I haven't been able to sleep much since New Years Eve when Dr. Rizzo told me that Giovanni was accepted into the Italy trials. I sleep at night between Liviana and Giovanni. I have been laying awake staring at the ceiling listening to them breath. I know as parents we all find ourselves listening to that slow, rhythmic breath and loving every minute of peace on their sweet angelic faces. That breath has new meaning to me these days. I beg for those breaths to continue, to not ever weaken, to not ever stop. I look at their sweet faces and cannot for one second imagine not being able to see them. It keeps me awake...it makes me cherish every second no matter how chaotic and stressful.

As Brad and I have navigated our way through all of this I have told him that we must look at it from this perspective...There are so many people out there who get that unexpected phone call that their child has been lost in a car accident or other tragic event. Their child is gone forever and they are left to relive those last moments as they left home that day whether it was a good exchange or bad exchange...that is the last sound of their voice. We have been given a gift, in a way, because we know ahead of time what is around the corner so we have the opportunity to cherish every darn second, live in the moment, cherish the moment and realize the importance of the moment so much more than most people ever have the chance. I insist on making a positive out of this horrible experience. I must. It does not serve anyone, particularly our kids, for me to succumb to my emotions and sit in the corner and cry (like I do in my mind). I may be rather scatter brained at times and I spend way to much time standing in the kitchen not knowing why I am in there these days but I am trying to do what I need to do as a mother...it is what we would ALL do as mothers.

Many more updates as we prepare to leave under the illusion of organiztion :).

Hug Your Babies!

Amy

Many Updates...Some Hope for Giovanni...Hopefully.

2011-01-02T11:18:00.012-06:00

I hope you all had a wonderful Christmas and New Year. So many wonderful people, some we know and others we have never met donated and went shopping so our kids would have a wonderful Christmas and take the stress of the holiday shopping off of us. Our kids had a wonderful morning and just seeing the smiles on their faces and excitement (which for Miles comes across as non-stop chatter) was enough to, for one brief moment, take my mind away from all of the fear, sadness and anxiety of Liviana and Giovanni's diagnosis. The kindness of everyone really is very overwhelming and means so much more than anyone could ever imagine.

Liviana started getting sick the week before Christmas with what seemed to be just a nasty runny nose...the typical winter cold. By Christmas weekend however she was running a fever and pretty much unrecognizable as herself. I medicated her fever immediately since for her, we know that it can precipitate a rapid deterioration. We attempted to give her a bath, a favorite activity of hers on Sunday (the 26th) and she cried through the whole thing and could not even sit in the tub because her tremors were so bad. It was painful to see. Her fever lasted on and off for only a day and a half and she is slooowly getting back to "normal". She had a successful bath yesterday and splashed like she used to. I was so glad to realize that it was her being so sick that made it so difficult last time.

I was so happy to get this smiling photo during the 10 minutes of sun she soaked up in the 65 degrees on New Year's Eve.

Since her mental decline started she has decided that the playroom is her "comfort zone". She always wants to be in the playroom, watching Calliou. Those who have known me for a while know that I could not stand Calliou. I thought he was whiney, annoying little child and I used to change the channel each time it came on. Go figure it would become Liviana's obsession. I have to admit to not even minding the whiney little Calliou much anymore because it makes Liviana so happy. I hope people who visit realize that we don't isolate Liviana in the playroom. We bring her out with us all the time and within a minute of being away from her comfort zone she is asking to go back to the playroom (sometimes screeching to go back to the playroom). We want nothing more than for Livi to be right beside us like she used to be all the time but we have to acknowledge that things are what they used to be and she finds happiness in that room, in her chair, watching Calliou. We still get her up all day long, get her feet and legs moving and play with her but she wears down quickly and we hear that sweet voice say, "I want to go to playroom". We tried making her spaces in the office or living room where we are all the time but they didn't work for her...she still wanted the playroom. Sometimes she seems so mentally sharp and other times I am reminded painfully of her decline. One day she was sitting on the floor of the living room with me and suddenly started crying and saying, "I want to go home". I said, "Livi, we are home"..."We are hooome?", she said, "yes sweetie". "Is Daddy home?", "yes, Daddy is home". Little things like that happen on a daily basis. It is kind of like she is a mini alzheimer's patient if that helps put it in perspective.

The past couple of days she has given us great gifts of laughter and smiles. Apparently, Brad doing the running man for her is HILARIOUS (you should ask to see it) and of course, she asked me to do it as well...she liked Brad's version better. I truly thrive on those moments where she is laughing and smiling. Those moments keep me going.

Now, onto the G-man, Gio, Little G :). Giovanni is still pre-symptomatic, which means he has the chance to receive treatment that can slow or possibly even halt the progression of the disease in him. The options in the US are Bone Marrow Transplant or Stem Cell Transplant. Both have poor outcomes for Late-Infantile onset, which is what both Giovanni and Liviana carry. The process carries numerous risks, extensive chemotherapy, possible rejection issues since donor cells and bone marrow are used and extensive (possibly years) or immuno-suppression drugs. I have researched and asked questions and along the way have not felt comfortable at all with the options for Giovanni. It is a tremendous decision for any parent to make...I would not wish it on anyone. It doesn't seem right for Giovanni though.

An attempt at some "organized" photos after bath time ended in a few shots off and a naked tushy flying past me to play.

In Italy they are in the beginning stages of Clinical Trials of Gene Therapy for MLD. On a VERY basic level they use Giovanni's own cells, correct the ARSA gene deficiency and insert the cell back. There is very minimal chemo since it is his own cells and there is no rejection issues or immuno-suppressive treatments. This is what we feel comfortable with and this is what we feel is the best option for Giovanni. Our doctor here, Dr. Rizzo, has been wonderful and contacted the doctors in Italy before we even met with him and received Giovanni's diagnosis. He has taken all of the steps with them to determine that Giovanni did qualify and could be entered into the trial. Giovanni's gene sequencing had not been done yet because they were awaiting insurance approval so the doctors in Milan said to send it to them and they would run the sequencing. We are taking Giovanni and Liviana to the hospital tomorrow morning for blood draws that is then being sent straight to Milan. I will save my commentary on, "US citizen awaiting insurance approval has to send blood to another country for testing".

I expect to begin discussions with the doctors in Milan on Monday since this all fell on a holiday weekend on Friday. To say we are anxious is a massive understatement. I am hesitant to put all of my hope for Giovanni on this treatment but I would travel to any end of the earth for my kids lives....hope is all I have right now.

Giovanni is a very robust child. I think Dr. R. was surprised how strong, healthy and big he was. I swear he has the throwing arm of a 2 year old and he plays hard almost all day long.

It is immensely difficult to be able to get treatment for one child but not another. We will travel as a family for Giovanni and make sure that every moment of the life Liviana has left is filled with smiles, laughter and love. I can stay positive if I think of the gift Liviana is giving Giovanni through all of this, a chance to live, and the gift he is giving her through all of this, a chance to see beautiful parts of our world before losing her sight. It is very important to me that Liviana will have the medical care she needs while we are there including PT and OT so those will be discussions during this week also.

Giovanni is way ready for a nap. I had more to say but I will save it for this week since I know there will be much to update. This has not been proof read so I apologize for any confusion.

Hug your Babies!

Amy

An Update

2010-12-24T17:37:00.004-06:00

This will be a quicky. I apologize for being slow at updating from the appointment yesterday. Liviana and Giovanni both have been confirmed, through sulfatides in the urine to have Metachromatic Leukodystrophy, Infantile onset. Giovanni is pre-symptomatic and is hopefully a candidate for either bone marrow transplant, umbilical stem cell transplant or gene therapy. We have a lot of thinking and agonizing to do over the holiday weekend before beginning his journey this week with Doctor appointments and an MRI. I guess this will become Liviana and Giovanni's journey. God bless my babies.

I am getting ready to make cookies with Aria and Miles for Santa :). Liviana is watching Calliou which is her new favorite past time. She is not like Livi anymore which is so indescribably heartbreaking. She is drooling a lot and I bought her a cute bib the other day...she must even have cute bibs :). Her temper is not her. She is agitated easily and the other day when we were going to take her shopping after her occupational therapy appointment she was so upset and screaming so much in the car that we had to go home. That is not our Liviana...those are the hard things to take.

Giovanni...he is a wild man. He is my sweet, crazy boy who is terrorizing the house and eating everything in sight as he can. Gosh...if you could meet these kids...all four of them! He has a curl starting in the back (which is pretty much the only spot with hair) so imagine that sweet face, his blue eyes and light, curly hair.

I have to run. I apologize for being brief. You will get sick of me soon with all my postings about all we have to overcome, face and deal with. I love you all for your support! I can't say that enough. He is taking steps here and there but not walking. He is speed demon at crawling so I figure he doesn't see the benefit just yet. I promise to get photos of them all up soon from the amazing Jen Pinkerton :).

Love to you all. I am living in the moment and I wish you all an amazing Christmas of hugs, love, smiles, health and peace. Hug your babies!

Amy

Results at 2:15 today

2010-12-23T11:57:00.002-06:00

I called early this morning to find out if the results were in from Liviana and Giovanni's sulfatide tests. I got a call back as I made my way through Costco with Giovanni and Aria. The doctor wanted to see us in person today at 2:15. He didn't want to give the results over the phone. I have to assume this means that Giovanni tested positive for sulfatides which means he has MLD. Dear God in heaven my baby of all babies has this horrific disease too. I can't think of any other reason he would need to see us in person.

I will update tonight when I can and will update sooner on my Facebook than here. I just feel so numb and don't know what else to say right now.

Genetics {Minus} 101 and Giovanni

2010-12-16T19:26:00.004-06:00

Remember when I said that they were 95% certain she had MLD? Well, we are now facing that 5% of not MLD. I am trying to find any humor I can these days and my humor for this evening is in what will be my attempt at a genetics crash course hence the {Minus} . My graduate education although vast did not cover much of genetics and certainly the world of pseudo-deficiencies, ARSA enzymes and alleles was never touched on. I will do my best.

First, I felt my knees get weak and I thought I was going to pass out when Dr. Rizzo told Brad and I on the phone today that Giovanni had the same ARSA (or ASA) enzyme deficiency that Liviana has. At the same time he was reassuring that this does not mean he will go down the same road she is. That unfortunately is little consolation to me right now. He also shared that Liviana does indeed have a pseudo-deficiency allele for the ARSA enzyme which means that there is a good chance...more than 85% chance that she does not have MLD. She has A leukodystrophy but likely not MLD. The confirmation will come from urine which will be overnighted tomorrow (assuming I can finally be successful collecting enough from her). It is rare to find MLD in people with one copy of the pseudo-deficiency allele all though it does happen.

So...what does this all mean? It means that she is still deteriorating, she is still losing the white matter on her brain and we do not know why yet. There are other genetic tests being performed, particularly for a mutation in a e1f2b gene which would mean Vanishing White Matter Disease which is another, more rare leukodystrophy. For Giovanni it means we don't know anything either and don't know if he will begin having the same symptoms or what would be causing them at this point because we don't know what Liviana has.

So...if you are pouring your glass of wine right now...I will join you. I really have to find humor folks because I am terrified beyond belief, upset, confused and grasping at anything and everything I can. I will take any answer at this point and I just have to hope and pray that Giovanni's future is not the same as what Liviana is facing. It tears me down to the core to see her sweet face. Dear God it can't be! Please, it can't be.

We will know next week if the kids have sulfatides in their urine and will have one more answer that unfortunately may just lead to more questions.

My crazy, hair brained theory at this point comes from an article I found while researching the pseudo-deficiency of the ARSA enzyme. (By the way....1 in 11 of you have a pseudo-deficiency allele for the ARSA enzyme.) Here is the article. Basically, a pseudo-deficiency of the ARSA gene exacerbates the neurotoxicity of lead exposure increasing the sulfatide production. I do not know if Liviana has lead exposure but 1) she hasn't been tested and 2) Omaha has high levels of lead exposure (google Omaha and lead poisoning...we are on a CDC "list"). Our last home had our neighbors home replaced by the EPA for lead levels and our current home is flagged by the EPA for exterior trim painting and they were out measuring levels in our yard again 2 weeks ago. I called Dr. Rizzo's office and he said that lead poisoning would present itself differently, like anemia, and dismissed the notion. She hasn't been tested for anemia either. As a crazed mother I must rule out the lead poisoning since we know she has the pseudo-deficiency allele which could mean she does not have MLD but something else causing the rapid white matter loss. I am taking her to the pediatrician tomorrow to be tested for lead levels.

I guess if you are praying....pray for lead levels off the charts as an explanation because that would be a million times better than what we were facing or could face with an unknown leukodystrophy. I feel crazy even asking for lead to be an issue and I am also frustrated with myself for giving a sliver of hope to myself since I am not a doctor and surely they would have considered the lead issue with the known combination of ARSA enzyme deficiency.

Blah...it sounds crazy to even type it all out. I guess I am still in the denial stage. I bounce back and forth.

Thank you to everyone supporting us through prayer, meals, kind words, donations, gifts and love. Thank you to Jen for the Wednesday post on The Maternal Lens. The world of moms and photographers is strong and supportive.

I am getting Livi and Giovanni in the bath now. More later. Hug your babies TIGHT!

Amy

fg

Metachromatic Leukodystrophy

2010-12-08T15:18:00.003-06:00

That is our tentative (95% sure) diagnosis. Liviana's enzyme tests came back showing a deficiency in the Arylsulfatase A enzyme. Further tests are being done to determine if this is indeed MLD (checking the levels of sulfatides in her urine) or a pseudodeficiency.

I fully expected this diagnosis. She symptom-wise fit MLD the most. It still was hard to actually hear it finally from the doctor. I spent so much time day dreaming that they would tell us they were wrong and something treatable was causing her demyelination...a random virus, autoimmune disease...anything treatable. Liviana unfortunately doesn't fit any of the criteria for bone marrow transplants or other experimental research because of how far she has progressed with the disease. She would likely see a speed up in deterioration if we attempted BMT or experimental treatments on her and we of course want to maximize her time with us.

We don't know what we will face. All MLD kids are different. Her nutrition is very important to her health. A fever could cause a rapid deterioration. Unfortunately Giovanni has had a fever on and off for 3 days and Aria had one this morning. So far Liviana is fever-free. She is going to get reallly tired of me coming at her with the thermometer.

We went to her PT appointment afterwards and attempted to try out a walker for her. After 3 hours at the hospital though she was exhausted and just wasn't having any of it so we will meet again next week and hope to have her more rested so we can see how we can help her with her mobility. She isn't walking anymore but she scoots and sometimes crawls. We need to keep her legs moving and allow her to maintain some of her independence.

Giovanni was tested this morning and we hope to know the results of his enzyme test by next week. I honestly don't feel like I can function until we get those results. I don't know if there is enough strength in the world to get me through a positive diagnosis for another child. He has a 25% chance. Like I said on the last post...a 75% chance of not having it would have given me comfort a few months ago but Livi has always shown us, someone has to be in that "rare" group and it may be us. I may end up testing Aria and Miles as well for peace of mind even though they would have almost definitely had the same late infancy onset. There are case studies with variable onset so that is enough for me to worry. If Giovanni is positive he has different treatment options than Livi since he is presymptomatic. Let's hope and pray we don't have to worry about any of that.

I am emotionally spent. I don't eat when I am emotionally stressed like this and I have had nothing to eat today and strangely don't feel hungry. I still have a nursling so I know I need to eat...dinner is already on my mind.

I am so overwhelmed by the wonderful friends and family in our lives. Our church, Our Lady of Lourdes, has been amazing. We have instant family with them and have had help with meals being brought over, picking up kids from school and playdates for Aria or Miles. Our babysitter Tarah is absolutely priceless and we could not have faced any of this without her. Her sister was also able to come over and help this week when she was working and we had to go to the hospital for appointments. Jennifer Hendrickson has organized friends and family to help with various things from Christmas to vitamins for Livi. How absolutely humbling and wonderful everyone is. Liviana brought us to Omaha in the fall of 2007 with her CDH diagnosis and she must have known what a wonderful place this would be when the trials got even more difficult than before.

Liviana is much loved. Jennifer coined the term, "Liviana Lovers" today and I think it is appropriate. I know she feels the love and gives it back to all.

The days are more challenging around here. I hug and love her and wish I could take it all away for her. I am not sure exactly how the balance between her care, the other three kids and daily life will all work out but I am trusting in the process and having faith that I will be able to handle it all with grace and not an insane, raging, screaming madness :). An evening glass of wine is my friend (thanks Judy Robinson for the latest bottle :)).

More soon. Hug your babies! As I hit Publish Liviana sits next to me saying, "Me Awesome". Yes you are my sweet...yes you are.

Amy

Sigh

2010-12-01T09:52:00.002-06:00

Brilliant title, huh? I couldn't figure out what to title the post and I doubt you really want it to say the first thing that comes to my mind for how I am feeling.

I wish I had a ton to update. We are waiting on doctors and labs still. I contacted the Metabolic clinic first thing Monday morning since I was told that if I hadn't heard from them in 7-10 days to call them. Of course...I hadn't heard a thing. I know that the genetic testing will take a while to come back but still expected to be contacted. Afterall...we left the hospital with a basic "your child is dying" diagnosis. With that diagnosis came a simple, short one sheet Discharge Instructions. I found such irony in the simple, "call these people", "watch for fever", "bathe as normal" instructions with such a horrible, terminal diagnosis. When I did call I was told they would see her on January 11th. Really?....you don't want to tick me off people. I told the woman clearly and directly that was NOT an option and I needed to speak with someone else. I was finally contacted back and told that the doctor said the Lysosome count tests would not be back until Friday and genetic testing the following week. We will see the doctor next Tuesday for the Lysosome results, followed by her Physical therapy appt...Her occupational therapy appt is this Friday.

In the meantime I contacted a doctor in Italy who oversees clinical gene therapy trials for Metachromatic LD. We do not know what type she has at this point and all LD's are vastly different causes so the type she has is more relevant that just the Leukodystrophy label. Metachromatic however is one they were leaning towards so I want to be ahead of the game when we do get diagnosis. The doctor in Italy feels that based on Liviana's clnical presentation she is too far past their protocol for "pre-symptomatic and early symptomatic". She did urge me twice however to get Giovanni tested ASAP because if he is positive (he has a 25% chance) he would qualify. This is of course all IF MLD is the diagnosis. I surely would have to be put in a looney bin if a second child was diagnosed. I truly cannot imagine my own upcoming pain with Liviana's journey, let alone seeing a second child go through this. I used to take comfort in statistics...that was before my own child faced first, CDH and now a 1 in 100,000 genetic disorder.

Liviana has her ups and downs. I have been able to identify some benefits of Vitamin B12 for her and there is quite a bit of research related to B12 and myelin. Anyone who knows me knows that I am on a far end of the natural spectrum . I turn to nature for much of our health related issues and it has always served us well with childrden who are rarely sick. I of course recognize the role of modern western medicine but I am not egotistical enough to not recognize that there is an entire world of natural approaches out there, other approaches to health and medicine from other belief systems and undiscovered cures and benefits in nature. Livi is getting healthy doses of D3 and Omega 3-6-9 as well as the B12. There is a marked difference in her following the B12. It is a mental and phsyical difference we see for several hours after supplementation. The role of B12 in the nervous system is pretty well documented medically. Modern western medicine doesn't have a cure for what she has but I am not going to sit by and not research and learn all I can to help her on my own.

Emotionally Brad and I have our highs and lows. I had a hard time the other night when I realized that Aria would grow up without a sister. I have said to her many times how lucky she is to have a sister since I always wanted one growing up. I imagined them sharing clothes...and fighting over clothes and being a support for one another as they grew up and navigated the world before them. I took Liviana to bed that night and told her a story about going to the zoo and she cheerfully made the cutest monkey noises you could ever imagine. I want her to LIVE! I filled her pillow with tears that night as she fell asleep just as I am filling with tears now typing this. Such deep profound hurt for my baby.

I still remember the day I brought her home from the hospital after her winning battle against CDH. The emotions after half of a pregnancy worrying that she would not live and the month in the hospital, standing over the machines, cringing at each beep and wanting nothing more than to pick he up and run from the machines and doctors, came out her first night home as I laid there just looking at her, smelling her and loving her. Not a single day has gone by that I haven't thought of Liviana's time in the hospital and her strength. It is hard for me to now wrap my head around what is happening to her. Why her, why again, why why why?

I could ramble forever but I have a lunch to figure out for my awake kidlet, Miles. He adores his sister and has wanted nothing more than for her to be able to run and play with him. All of our kids are amazing, wonderful blessings. They get me through the day with smiles and laughter and even during the trying times of petty fights over toys or whining I still know at all times that I am the luckiest mom in the world.

I will update again soon. Thank you so so much for your kind acts, donations and words. I honestly cannot imagine going through this without the love and support of all of the family, friend and strangers we have never met. I hope Liviana inspires you all and I wish so much that each and every one of you reading this could meet her and see that sweet face. She is a captivating child.

Hug your babies!

Amy

Guest Post

2010-11-27T19:49:00.010-06:00

A short introduction :)

Hi. My name is Vicki and Amy is graciously letting me do a guest post on Livi's blog. I met Amy in a natural childbirth group when she was pregnant with Livi about three years ago. I feel so incredibly blessed to have found a great friend in Amy. I started learning photography a couple years ago and her feedback and encouragement has been invaluable to me, so much so, that I started my own business. She has this great ability to showcase people's hearts in her photographs and I am sure many of you who are clients know of this talent. I am lucky now that Amy and I have gotten closer and she is one of my best friends. I will do anything I can to help her and her family.

So I am writing to everyone tonight because I want to let you know how you can help the Price family. We all are hoping and praying for a miracle, but we also need to understand the realities of the situation. Amy isn't doing many sessions now so she can be with Liviana. Her income is a large part of the Price family's cash flow. Without it, they cannot pay for basic necessities, not to mention Liviana's supplements, which will hopefully slow the progression of this devastating disorder.

Please don't get me wrong. This is not a guilt-trip. This is a plea for help. A plea to allow this family to spend their days together without having to worry about whether or not they will have heat through the winter. Without worrying about what they will eat. And without worrying about how they will need to pay for a funeral. It would mean so much to me if you could sacrifice your morning coffee or buying the newspaper for a few weeks and instead, give to this family in need. If you are a client, try and buy an extra canvas or other product.

Here is an easy place to donate

If you cannot help financially and live nearby, instead of saying, "I'll help you with whatever you need" or the like, perhaps offer to cook them all a meal and bring it over or maybe even clean her bathrooms. :) If you are not nearby, pass the information about Liviana around to all your friends. The least we can all do is bring awareness of this terrible disorder to those like myself who had never even heard of it prior to Liviana being diagnosed.

Let's help this beautiful angel and her family.

The Front

2010-11-23T18:32:00.002-06:00

If I smile, laugh and seem to be enjoying myself, it is a front. While I am human and completely capable of enjoyment despite what we are facing, I feel pain down deep into the core of me all the the time. I feel guilt when I enjoy myself, fear when I see Livi's unsteadiness and overwhelming sadness when I see clothes in her closet that I had been setting aside from Aria that she may never wear. Walking through TJMaxx and seeing clothes and thinking, "This would be cute for Liviana" and then realizing, "Oh...she may not even get to wear that size, or make it to that season" was more than I could handle yesterday.

I really feel like I am an empty shell going from room to room, task to task. I love my time with the kids, they still make me smile and happy but for the absolute love of all that is good...how can I possibly live for one minute of any day without thinking of losing my baby. I cry, when I am alone, at the fleeting thought of our days without Liviana. She is part of us. We love her, we laugh with her, we imitate her saying "alright" in her funny, sweet little voice.

It really is such a deep, deep pain. I don't know what we are facing either, which makes it worse. I can handle the physical deficits. I will be by her side for every feeding, walk across a room...anything she needs. I am overcome with fear however about mental decline. I don't know how I will handle Livi not being "all there" mentally. I want her to know love every minute of her day and I am fearful that she won't be able to feel that love as she mentally declines.

I want to tell everyone I see about her, despite me being a somewhat private person. I want everyone to know that amazing face, those big eyes and those long, dark lashes. I want everyone to hear her sweet voice, see her kindness and how she takes care of her little brother and watch her grow. How, how, how can we possibly live without her. I want to scream as loud as I can, "This isn't F------ fair". I am wasting away inside as I wait for what comes next and live this nightmare for Liviana. I would give anything and everything for her as long as I could still be a mother to my kids. I have actually thought that if I could give my legs and just be a half a person I would still be able to mother them, hug and love them and she would still be here.

Blah...dinner is waiting thanks to some amazing, wonderful people from our church. I don't know what we would do without all of the people in our lives, whether they have known us for years and years, are family, are long lost friends or our new family at church. No parent should have to go through this and I would give anything in the world for Liviana to not have to go through this.

Thank you from the bottom of my heart for all of you.

Another Journey, Another Fight

2010-11-21T07:34:00.002-06:00

I always felt bad that I didn't keep Liviana's blog updated. She was doing great though and part of me was happy to not have to update on medical issues.

I am saddened beyond sadness however to make this newest update and begin a new journey and fight in Liviana's life.

At this time, I am not going to recap the slow, progressive decline that led us to this new diagnosis. I likely will throughout upcoming posts but I told the same story about 10 times in the hospital this week and don't have it in me to go through it again.

Liviana has been diagnosed with a rare genetic disorder called Leukodystrophy. There are 2 dozen types of LD and we are awaiting tests to determine what type she has. The hard part....LD is not treatable. It is a progressive, degenerative brain disease. She is basically losing the white matter on her brain. I am sure I will talk in more detail about LD later but that is the basics for now.

Livi has significant gross and now, fine motor skill deficits. She has difficulty walking, although she surprises us at the end of the day with a mini-rebound of sorts. She has balance and coordination issues and hand tremors. She has lost her gag reflex and is on thickened liquids to prevent further aspiration (which a swallow test revealed) into her lungs.

She is still so so beautiful, funny, witty and a ray of sunshine wherever she goes.
She is surrounded by love and we will do all we can possibly do for her.

This is short and sweet. Her blog will become active again so there will be more updates. I am overwhelmingly fearful, in denial that my daughter will not be here one day and hoping that the doctors are wrong, although that is 99.9% not possible at this point.

I welcome all of the research warriors out there to search out information on Leukodystrophy. She does not have ADL, which only effects boys. They believe she may have one of a few types...the two they mentioned were Metachromatic and Krabbe's Disease. At this point her EEG looked normal and she her optic nerve looks great. There is experimental gene therapy being done in Europe for Metachromatic LD.

That is all for now. When I have a chance I will update her photos on the blog. She is an amazing beauty, inside and out.

Thank you to everyone for your support and love. It keeps us going!

Bad Blog Mommy

2009-05-18T17:56:00.006-05:00

I cannot believe it has been February since I last updated Liviana's blog. I should be ashamed of myself.

It seems like time gets away from me with the kids and my photography business and life. I feel terrible that I have done a horrible job checking in with the other CDH babes out there. I know there have been some heart breaking losses lately. I guess I try to avoid that pain in some childish hope that it will all stop...that we will stop losing little ones to CDH. I was contacted recently by a friend I met on Cafemom in 2007. She is a Kansas girl and we had many things in common. She recently contacted me on facebook and told me that a friend of hers had just received a CDH diagnosis. My heart just dropped when I read those words. It is still all so fresh and real. I HATE that any parent will go through those moments and here those words.

Liviana, Liviana....what a little spit fire she is. She spends her days terrorizing the house, taking off all of her clothes and diaper and running past me with a giant smile and the one arm she swings when she runs flapping next to her. She is an adorable, cuddly, lovey, silly, funny little hellion. We are all entertained by her antics. She currently likes climbing on top of anything she can reach and get herself on to. I was standing at the sink washing dishes the other day and suddenly found her standing on a stool beside me, smiling big and trying to see into the sink.

Liviana and Miles are quite the pair. When they get going together watch out. He gets so excited when she starts playing with him and more than once they have had some collisions as they run into each other from all of the excitement. Both Aria and Miles are still so excited when they hear her wake up from a nap or in the morning. They run in the room, smile, laugh, tickle her...so much love to go around.

Health wise Livi is doing great. We had a lovely stomach bug make the rounds in late March. Miles is the only one in the house to escape it but it only lasted 24 hours or less for each of us. It barely phased Livi to throw up. She seemed like it was more of a nuisance to her day than any big deal. We also had a nasty respiratory virus in the beginning of April that all of us had. High fevers, congestion and coughs all around. It seemed to hit Aria and Miles harder than Liviana. She is still breastfed so I'm sure some of those immunities helped her along.

She has another appointment in late August for her spine. I may call and see if we can move it up. I can see that her shoulders are not even and she has horrible posture. If I put her on a counter or other flat surface with her feet hanging off she cannot sit up straight. It really worries me but I am trying to stay positive about it all and know that she is so strong and will make it through anything. She can't turn her head in each direction completely but she has adapted well to that challenge as well.

Have I mentioned that Liviana has curly hair like Miles....too cute!

My business is going really well. You can visit my website at Amy Price Photography . I am loving photographing newborns the most. Take a peek and enjoy :).

Liviana, very unexpectedly, very not planned and despite prevention methods, is going to be a big sister. It is obvious that there is a plan out there much greater than us. We don't know much at all yet. It will probably be late December, early January when the little surprise will arrive. Aria will be 5, Miles will be 3 and Livi will be almost 2. I must be insane....all while taking care of my kids and running a business. Don't look in my laundry room...something has got to give ;). Of course I am terrified about birth defects and a genetic disorder since that issue is still unresolved with Livi. I will keep you all updated.

Gosh..I think that is all for now. I will try to update more often and certainly will after any appointments. To all of the CDH parents out there I think of you and your little ones often.

All my best....
Amy

Another Special Anniversary

2009-02-17T17:11:00.006-06:00

A year ago today we got to bring our sweet, strong, beautiful girl home for the first time. I remember the day so clearly like it was yesterday but it strangely feels like it was someone else's life too. She is so "normal". Nobody would ever know what the first month of her life held. When I tell people about her (which is every chance I get) they look in such wonder and amazement. Not only have they never heard of a Congenital Diaphragmatic Hernia but they would expect someone who had major organs relocated, a partial left lung, a heart defect and multiple hemivertebrae to look less well, less normal, less vibrant. That's our Liviana though.

I apologize for the delay in posting. I know have three very active, bipedal children who keep things going around here. Livi has been walking for a few weeks now but not until this week had she decided to make it her main mode of transportation around the house. I don't think I saw her crawl at all today. It is so funny to see her walking. People have been startled to see her walking because she is so petite looking.

She has not had her 1 year appointment yet (It's next week) but I believe she is over 20lbs. On our scale she is right at 20 and feels every bit of that weight. She looks so petite but she is quite the lug...a cute, adorable lug though.

She is starting to vocalize words quite a bit. She says, "There she is" is in her own words which she picked up from us saying, "Where's Liviana"? She has the usual Dada and Mama and she also says "Uh, Oh" and has mimicked "camera", "Miles" and "Aria".

I wish everyone could be around her. She is a ray of sunshine. She smiles, laughs and tries to carry larger than her objects around. She loves to eat and is still getting mama's milk too. She adores her brother and sister and when they go to bed before her she tries to escape down the hall to wake them up. I love seeing the kids all play and laugh together and Miles and Livi are quite the troublesome pair when left to their own devices.

As you can see I have bombarded you with tons of photos. I am in the process of building into a professional photography business. I am very lucky to have willing, happy and beautiful subjects, *most* of the time. I will be adding yet another blog to my listing soon with my photography information (A. Price Photography). The blog did an odd crop on my photos. They all lost the side...I'll have to work on adjusting that.

Thanks everyone for continuing to follow Liviana's Journey. She will be having more appointments this year and another x-ray for her spine soon. She really has poor posture and I can see that the curvature I saw back in the summer seems even more exentuated. Let's hope it is mommy paranoia.

Enjoy the photos and keep all of the CDH babes, past, present and those yet to come in your thoughts and prayers please!

Much love....Amy

Happy 1st Birthday Liviana!

2009-01-17T23:08:00.004-06:00

In honor of Liviana's 1st Birthday I have written her a letter and made a tribute video for her. Make sure you have your sound on. Enjoy!

My Dear Liviana,
I can't believe it has been a year already. I swear it was just yesterday that I was planning for your arrival with a combination of joy and fear. So small, yet so strong, describes you perfectly. You took CDH on head first and never looked back.

I prepared for every possibility with you. I researched anything and everything related to CDH so we would be prepared for the worse, yet hope for the best. I never anticipated you would kick CDH as hard and swift as you did. Not only did you beat CDH but you surprised us with heart and spinal issues that barely phased you and still don't today.

When I look in your eyes I see someone who already has learned an important life lesson...the lesson that life is too short, anything can happen, live each day as if it were your last. With your smile, your daily joy and your amazing interest in everything around you I feel as though you already know what you have been through. You already know that it could have easily been different and you could be an angel above with all the other CDH angels. I feel as though the CDH angels who have gone before and after you are with you, cheering you on each day.

I thank you for so much Liviana. I thank you for inspiring me. I thank you for challenging me. I thank you for making me smile in an instant. I thank you for bringing joy to your brother and sister's lives. I thank you for tucking your sweet hand under my chin each night as you sleep. I thank you for your loving gaze up at me as you nurse. I thank you for the peace you seem to exude. I thank you for teaching me about facing fears and being strong. I thank you for the hugs and cuddles. I thank you for teaching me about CDH and giving me hope that together we can fight it. I thank you for being such a fighter. I thank you for your spirit. I thank you for your sense of humor. I thank you for your feistiness. I thank you for being in our lives each and every day. I can't imagine a single moment without you.

Happy Birthday sweet girl. You made it here with strength, grace and perseverance. I look forward to what you will continue to teach me and bring to our family for all your years to come.

Make video montages at www.OneTrueMedia.com

Brad's Surgery Update

2009-01-09T16:59:00.001-06:00

I decided to just post his update here for ease and simplicity.

Good news first...no apparent cancer in the initial frozen sample. They also ended up NOT doing an entire lobectomy and just removed the part that was infected. The doctor said he had several areas called "Blebs" in the upper left lobe. He also had an apparent unknown infection, inflammation and his lungs were stuck to his ribs. He had to separate his lungs from his ribs and removed the area that had all the issues. No wonder he has been in so much pain.

I did not get to see him before I had to leave. I left his bag for him and will probably get up there first thing in the morning with the kids. This is such good news. The doctor kept reiterating that he did not know if this would take away his pain. He said he is not about removing his pain. I have to think it will though, even if the doctor is not in the business of pain removal.

We will need to await toxicology to find out the unknown infection. It must be something obscure since tests already done have come back negative. I am betting on something fungal but we will see.

Ironically when I did a search on Blebs I found that it is sometimes linked to Congenital Diaphragmatic Hernias. They can cause a collapse of the lung. Brad and Liviana now share incisions from surgery in the same place. I always knew they had a special bond :).

He will probably be in the hospital for 2 days. They said he can go home once his chest tube comes out.

Thanks everyone for your support! It means the world to us! I am doing a Happy Dance tonight!

Sour Apple!

2009-01-05T15:09:00.008-06:00

Do you see that ticker...the one above this post that says how old Liviana is? Is that right? It can't be right. I really cannot believe she is almost 1. I swear I was pregnant with her just yesterday, sitting by her isolette in the NICU just yesterday and bringing her home, just yesterday. This has been the fastest, most fearful and most joyous year of our lives.

Liviana amazes me every single day. She is getting so big and active. She is so smart and still such a keen observer. I can' really tell she is growing. On our scale at home she is 19.5lbs. She really doesn't look it at all. She is a petite little lady. When people see her walking in public they are going to freak out and think she is a 6 month old. About that walking...she takes steps here and there like a pro but she has not made the decision to go bipedal full time yet. I'm in no hurry, as it will add to my daily challenges but I'm sure she will be there before her 1st birthday.

I'm working on a video and post in honor of her 1st birthday. It is an emotional and rewarding endeavor and I hope you will all enjoy it upon completion.

A quick update on Brad's situation. He is having surgery this Friday, January 9th. They will be removing the upper left lobe of his lung. He is expected to be in the hospital for about 3 days. They said that once his chest tube comes out he can go home assuming all is well, which is usually 2-3 days. I am hoping the doctor's surgical skills are better than his bedside manner, which left something to be desired. I'm going into this positive even though I can't help but be worried about he process. This is almost 1 year from when Liviana had her repair surgery that directly impacted her lung function. Brad will also be having his done laproscopically just like Liviana, in the same place, with the same incisions. What irony! If he has too much scar tissue they will have to do an open surgery which I really hope does not happen.

Keep him in your thoughts and prayers please as well as the kids who have a hard time when Daddy is not around (especially little Miles).

I will likely move the update on surgery over to our other blog but I will post the notice and link here on Liviana's blog for all who want to follow.

Merry Christmas and Happy Holidays

2008-12-26T08:19:00.003-06:00

I hope everyone had a wonderful Christmas with family, friends, food and fun. My house is a complete disaster but my heart is full of love and happiness.

Liviana is doing so well. She likes to stand by herself but accept for one, random time, she is not taking any steps without holding onto something. In her own time. She has quite the sense of humor and loves the baby doll that her Nonna got her for Christmas. She loves going over and turning up the volume on the TV stereo and laughing hysterically. I think I'm going to have my hands full with this little one.

Brad has another appointment on the 30th which they are calling a "surgery consult". They are wanting to remove the upper left lobe of his lung. I was unable to go to the first appointment so I will be in attendance and will be asking many questions this time. I will keep you all posted. How ironic that lung issues challenge us in Liviana and Brad at the same time of year, two years in a row.

All CDH babies, especially those special angels are on my mind this holiday. Their strength inspires me each day.

Cramming it all into one post

2008-12-03T11:46:00.009-06:00

I'm a little slow getting to our Thanksgiving post and Livi's appointment this week. I think I needed to rest from the week of cooking, eating, birthday party and guests. Thanksgiving was great. My brother and his wife and my mother joined us for the Holiday. I think I am a gourmet chef so I spent quite a bit of time on menu planning. We went non-traditional but still really good and memorable.

Aria's 4th Birthday was the 25th and we celebrated on the 28th, the day after Thanksgiving. I still can't believe she is 4 years old. That seems like such a milestone to me. She's not a toddler anymore. Where is the time going? She had so much fun. She had been talking about her birthday since Miles's birthday in September. I'm still trying to figure out how to balance Liviana's blog with our family blog but I have thrown in some birthday party pictures also. Liviana is wearing a dress I bought for Aria when she was livi's age and never got to wear. It fit perfectly with our pink and brown theme.

Liviana had an appointment on Monday. It was a delayed appointment (or early, however you look at it) because her pediatrician was on maternity leave (her 6th child!). At 10.5 months she weighed 18.5lbs. and is 28inches long. She is a petite looking little lady but doing so well. She was around 40% on her weight and 50% on her height. She thought she looked great and was very impressed that she kept waving "Hi", is standing by herself, has amazing fine motor skills (she puts caps on water bottles and puts legos together) and is so perfectly "normal". She will have her next appointment around her 1st birthday which is right around the corner.

Brad has his repeat CT Scan early tomorrow morning. They rescheduled his appointment at the lung cancer clinic for the 18th which means he would have to wait that long to get the results. We have "connections" though and we will be getting the results Friday at the latest. I'm worried if they still show the mass on the lung that the holiday will cause a delay in a biopsy being done. I am certainly going to push for everything to be done quickly. We really can't keep waiting with so many questions.

I really cannot believe that it is a year later and Liviana is almost a year old. I remember this time last year like it was yesterday. I swear the kids watched Rudolph the Red Nosed Reindeer just yesterday, I swear I was big as a house and consumed with fear for Liviana's future. I swear I just gave birth to her yesterday and watched as she was intubated and taken to NICU. This has been the fastest year of my life and one filled with so much joy and love. We have grown so much this year and despite the stress and challenges brought to us we are better for all of it. We can be thankful for all we have and then some.

There are other CDH babies celebrating their 1st birthdays now also. I remember their arrivals and am so thrilled to see how far they have come. Emerson turned 1 today and Cadenne turns 1 on Saturday. Happy Birthday little ladies! You have added much to the world and many gray hairs to your parent's heads.

I will update after we get Brad's CT results. Please hope for positive results. I hope everyone is doing well, staying warm and staying loved.

Brad is home...without answers.

2008-11-13T14:48:00.003-06:00

Brad was released this afternoon. We don't know any more information but he is not in as much pain right now and that is huge progress.

The diagnosis is being left at one of two things; One, is lung cancer and two is something obscure that infected his lungs, likely through work. It is not pneumonia. The infections disease doctor was in and had such a perplexed look on his face. Brad is only 32 so they certainly don't expect to see a tumor like this at his age.

He is home on an antibiotic (a pricey one at that), steroid and inhaler. He has a regular family doc appointment on the 20th and a CT Scan and Lung Cancer Clinic appointment on the 4th of December. They told us not to freak out about the Lung Cancer Clinic that they see people with other obscure lung problems but I really can't help but not.

He lost a pound again and is back to 179 lbs. (He is 6'9 for those who did not know) so my goal is to fatten him up and keep him from thinking he can run off to work right away.. His mother arrived last night and I did not warn her about his appearance and I think she was a little startled last night when she saw how thin he was in the hospital.

He is still on a nicotine patch and said he doesn't have a desire to smoke. This has definitely gotten his attention on many levels.

I meant to ask for a copy of his x-ray or CT Scan and forgot. The best I have is a drawing a doctor put on the dry erase board. The large blacks spots in the upper lobes are the areas in question and there are smaller spots of it below as well.

He did not have doctors orders to not work so he is out checking in on a couple of jobs right now. Unbelievable! I don't know how I am going to get him to relax.

Thanks again everyone for your support. We are not out of the woods but I am SO glad to have him home. Miles's reaction of joy was priceless. The kids missed him so much.

Liviana's Daddy In Hospital

2008-11-11T16:46:00.002-06:00

I wanted to post a quick message letting everyone know that Brad is in the hospital. I won't go through all of the details but he had been having strong chest pain and back pain as well as other miscellaneous problems. A CT Scan has revealed a little pneumonia in his left lung as well as a 3.2cm mass in his upper left lobe. They have not done a Brochoscopy or Biopsy yet to determine what the mass is yet. I suspect that will be tomorrow (they are waiting to see if antibiotics improves the area. He is also currently under TB isolation at the hospital because the mass was unknown and they could not rule out Tuberculosis. I don't think he has TB but they are following protocol by imprisoning him in a small insulated room which has him not a happy camper.

I am exhausted and emotionally spent. He is at Methodist hospital where Liviana was born and she "kind of" was in the hospital (since the Children's NICU is on the Methodist Hospital side). It is surreal being back there worrying about the mortality of a loved one. My greatest fear is obviously lung cancer since Brad smokes. Don't worry, I have mentally Bi***** him out several times. I will move to verbally when he is feeling better :).

Please keep him and the kids in your thoughts. They miss their daddy so much and I know he hates not being able to see them also.

I will keep everyone updated.

Not So Scary Tiger

2008-11-01T07:56:00.008-05:00

This Halloween was the first time the kids have dressed up and experienced the joy of going door-to-door and having perfect strangers toss candy into their bucket. Liviana was a little tiger, as was Miles. Aria was adamant about being a princess, a fairy princess. Here are a few pictures. First from our trip Thursday night to the Children's Museum trick-or-treat night, complete with snacks from Whole Foods and next from trick-or-treating last night. Our littlest tiger was asleep half way into our walk around the neighborhood. I will have more Halloween details today on our other blog.

Liviana is such a keen observer that she hardly made a peep while at the Children's Museum until we got away from the crowds. I kept trying to get pictures of her and she seemed to distracted with watching everything going on around her. I got these half grimace smiles from her while she looked around.

Livi was also very upset when I tried to put her little paw gloves on her hands. She does NOT like her hands messed with so we scrapped the paws, making the little tiger less scary of course.

Enjoy the pictures. The kids sure did have fun!

Hi, Miss Smarty Pants!

2008-10-20T12:18:00.003-05:00

I must admit, I am very biased. I think my kids are beautiful, wonderful, smart little people. Liviana, of course is no exception. She is, by my mommy standards...a genius.

Little Miss has started waving and saying "Hi". It is the cutest thing ever. She says Mama and has many other jibber jabber sayings that I'm sure are quite profound and meaningful. I am so proud of my little sweet pea. I need to try to get her on video waving and saying "Hi". I will make that my new goal for the week.

I have always noticed how incredibly observant Liviana is. I wonder sometimes if her days laying in the isolette and crib at the hospital have made her skills of observation beyond those normally found in an infant. Maybe she learned how to maximize observation from because of being a passive observer in her previous environment. I realize how much she observes when I see her begin doing things she has watched Aria and Miles do. She sat for at least 10 minutes the other day trying her hardest to put Legos together. She was not just banging them on each other, she was turning them over, lining them up and trying to put them together. She also will put them, with success on the big Lego board, but has a harder time putting two blocks together.

Sunday, I heard her making her growling sounds and when I glanced at her, she had picked up the paw that goes with Miles tiger costume and was waving it around and growling at Miles. She has seen him with his costume on waving his hands, er paws, and growling and she was imitating him even though he had not had his costume on for several hours. So, stinking cute...and brilliant :).

She is pulling up everywhere and anywhere, beginning to cruise along furniture and this morning I caught her with one leg up on the bottom step trying her hardest to get the rest of the way up. She puts everything in her mouth and I will see her picking up something she shouldn't as it heads into her mouth I'll say, "Livianaaaa" and she will look at me, start chuckling and drop it. I wish everyone could see her adorable little face and smile.

Okay...enough of my bragging. I am just so proud of her. I am so struck each day by how "normal" she is. I never, at this time last year could have imagined more perfect, sweet, adorable, funny, precious, healthy little girl. We are so truly blessed.

She now has three teeth...the two on the bottom and one on top. She is still just exclusively breastfed. I have not started her on solids and she is doing great and growing well. I can tell she is getting taller. I think she is going to be a tall, skinny little girl, imagine that.

We have lots of snot going around the house right now. All of the kids have a lovely runny nose, a tell-tale sign that winter is approaching. Livi seems to have it the worst and I am hoping that she does not get pneumonia like the last time a little cold went around the house. She really did great last time so I'm optimistic we will get through this unscathed.

There is so much going on with Liviana's CDH pals. Carter made his appearance almost 2 weeks ago in Blue Devil/Tarheel land and is resting his lungs on ECMO and charming everyone with his rockstar hairstyle. Little Nayeli is expected to make her debut today or tomorrow and Sydney is not far behind. Little Ava Helmick reherniated and has had an extremely difficult time post-surgery. Please keep her mom Terri and Ava in your thoughts and prayers. I have added a link to their blog at the right. We also had lunch and an extended afternoon with Angle Elli's mom last week. It was wonderful to meet her and I can see what an amazing mother she is and how lucky Elli is to have her.

More to come soon.....

Amy

Changing of Seasons and Memories

2008-10-03T08:32:00.003-05:00

Fall is in the air. Upon the first glimmer of fall about four weeks ago I found myself feeling very emotional. The change in the air, the sound of leaves, the smell of fall, all brought me straight back to this time of year last year. We are coming up on one year since we got Liviana's diagnosis (October 12) and I never would have thought it would have impacted me as it has.

It is amazing to me how something so simple as a season change can force so many emotions and memories to the surface. I could not escape it. I found myself right back in Wichita, first getting our CDH diagnosis, crying all the time, fearing for the life of our daughter at every minute of every day, not knowing where she would be cared for, not knowing how we were financially going to handle all of it, not knowing what the future held for our family that was to become 5. Would we still become 5 or remain 4 with only memories of Liviana? I remembered Rainbow House and our appointments in Omaha, trying to find a home, trying to stay positive for Miles and Aria despite my overwhelming fears and anxiety. I had a friend recently ask about Halloween and what the kids did last year. I had to stop and think for a minute before remembering that Halloween was spent in Rainbow House while we looked for a place to live.

It really took me several days to fight against the constant memory of last year. As the days have gone on and the season gets more and more evident I have been distracted from the negative emotions by Liviana's smile, her laugh, her keen observation of her environment, her crawling (that started this past Saturday) and her growing butterball belly. Liviana co-sleeps with us and I am replacing those memories from last year with the memory of her sweet little hand on my arm at night as she snuggles close. I am focused on this amazing little girl who has no idea the powerful impact her short life has had on us.

Next year at this time I may still be taken back to those challenging and emotional days, and that is fine. I know however that new memories will be created this year, of her crawling, her growing, her overwhelming desire to eat the grass outside when she is in the yard. I will never forget the challenging times but I am so amazingly grateful and blessed that we are able to create new memories that are so joyful each and every day.

We Interrupt This Dance Party...

2008-09-26T17:01:00.005-05:00

I'm taking a break out from our family room dance party to share some more recent pictures before I forget.

I am debating about making "Liviana's Journey" transform into a Price Family Blog or add the Price Family Blog onto my other blog, "The Vacuum Chronicles". I only have one post on The VC but I could easily fill pages with the antics of our daily life. I really feel like I want to keep Liviana's Journey just for her so I will probably begin adding and updating on the family as a whole on The VC. Now that I have worked through the issue, while typing on the blog I will let you look at some new photos. Have a great weekend everyone!

So Much To Update

2008-09-19T08:38:00.005-05:00

I apologize for the updates being far and few between. Each time I had something to update I would decide to wait since something else (an appt., a gathering, a visit) was coming up soon.

Liviana is doing really well. She crawls...backwards. She has not quite figured out the usefulness of the crawl for propelling her forwards. She goes from crawling or laying down to sitting and back again. She covers quite a bit of ground when given the opportunity. She has been saying "Hi" in a sweet sing songy voice after I prompt her with my sing songy "Hhhiiii" several times. Anytime I say "Boo" from anywhere in a room she will start laughing. She anticipates the angst that is soon to follow and can't contain herself. I have heard "mama" several times and they seemed very specifically to be directed towards me. She is indeed the cutest, sweetest, funniest little 8 month old around...I am of course a little biased.

Since my last update Liviana has had several appointments. First, for her weight. CDH babies are often watched for their weight gain. It can be difficult for them since they burn so many more calories with their respiratory system than normal. At Liviana's appointment yesterday she weighed.....drum roll....17 lbs. even! I am so proud of my little butterball. I didn't need doctors telling me she was gaining weight thought. I could easily tell when I was holding her that she has been packing on the pounds. She was also measured at 27 inches in length. Livi is still pretty much just breastfed. She has minimal bites here and there. She really is not interested in food. She likes the spoon and the bowl but the food, she is not so fond of. The faces she makes are quite laughable...they really must taste horrible to her. So far the only thing she seems to like is plain, organic, Greek yogurt. She makes quite the mess of it also. I'm not too worried about the eating. She is clearly getting all she needs from breastmilk given her growth. She'll eat more solids when she is ready. Miles did not eat until almost 8 months old and you can't keep food out of his mouth now.

She had her NICU follow up last month and that went really well. She had developmental assessments by the psychologist, PT's, OT's and doctors. It was a 2 hour appointment and we somehow managed it with all three kids in tow. I got teary eyed watching her during the psychological assessment. They had her in a high chair and tested several concepts like her ability to pick up two items at one time, her ability to take items out of a cup, looking for items that have dropped on the ground and stacking blocks. To sit and watch my little girl perform these tasks with ease was very emotional given the first month of her life. She ended up scoring right at her age and a little ahead in some areas on the assessment. So proud. She also has been sitting unassisted for quite a while and she demonstrated her rolling expertise also. She was right on for those skills also.

I brought the letter from Dr. Olney regarding the potential SCD diagnosis. Dr. N was unfamiliar with the condition, which did not surprise me considering there are only around 130 documented cases in literature. He said he would recommend getting the pricey genetic test done if for no other reason than peace of mind for me, whom he referred to as a "pain in the neck" in a good way :). He really thought Livi looked amazing and he wants to see her back when she is 16 months old.

Our next appt. was with Dr. C, her surgeon for a follow-up. This was short and to the point and immediately followed our already 2 hour NICU clinic appointment. He always checks her incision sites, says she looks great and that's that. He will see her again around her 1 year birthday with X-ray.

Yesterday, Liviana had her follow up with Dr. G., her Orthopedic surgeon. I sent the report from Dr. Olney ahead of time so he had a chance to look it up since most docs are unfamiliar with the condition, I don't think he did. He said that if Livi did have this condition it was a mild variant and not one that was going to produce the high mortality rates commonly found, YEA! He said she appeared to have some kyphosis in her neck but is only showing around a 15% curvature which is too low for them to rule out as being from position during x-ray. He also said he cannot get a good picture of her cervical spine (neck) on x-ray and only CT scan would show that in enough detail. He said he would not order a CT scan until he is at the point of considering surgery. She does have limited motion in her neck to the right and given the issues with her spine it has been decided among many docs that she will not get PT for the issue. He really thought she looked great but wants to follow her closely and will see her again in 6 months. I left the appointment relieved and thankful. We now will await genetic testing to be sent off to Wisconsin for the SCD.

Liviana is now a little sister to a big, 2-year old boy. Miles turned 2 on September 9th and we had a celebration on August 31st when family could be in town. He is such a sweet, loving boy and he loves his big and little sister so much. I am so blessed and proud of all of my kids.

I am being summoned by the little ones and I hear a "mamamama" coming from Miss Livi so I will run for now. I promise more updates soon.

Elliott Arcile Reed August 19, 2008 - September 8, 2008

2008-09-08T12:45:00.002-05:00

Heaven just gained one beautiful, spunky, amazing, strong little girl this morning. Little Elli passed away at 5:10am this morning in her mommy's arms. You will be so missed Elli, even by those who never were able to see your sweet face in person. You have touched so many.

You are in our thoughts and prayers Cassi and Brian.

Angel Wings (by Jean Rozon)

A precious angel slipped away, no one heard a cry.
No time for Dad and Mommy to sing me lullabies.
My time with you was much too short. I had to leave too soon,
But love had joined us as I grew inside my Mommy's womb.
It wove it's way within our hearts, in all our hopes and dreams,
Until the very purest love became my tiny wings.
Although I could not stay with you, I knew right from the start,
That once you felt your angel's love, you'd keep me in your hearts.
I'm just a little angel but my time was not in vain.
As dark clouds that surround you give way unto the sun,
My precious parents you will see that any heart will sing,
If only for a moment it is brushed by angel wings

William Ethan Morgan ~ 8-19-08 - 8-20-08

2008-08-20T18:09:00.004-05:00

It is with heavy heart that I am sharing that beautiful, strong William Ethan Morgan born on August 19, 2008 has passed away. Please keep his family in your thoughts and prayers. Please visit their blog (listed on the right) and leave them a message in this difficult time.

Why must this devastating birth defect continue to take the lives of such strong, perfect babies? We must fight do all we can do to fight this.

Spondylocostal Dysostosis

2008-08-15T14:30:00.002-05:00

I bet you are thinking, "What"? I was too.

I really thought we had our answers, or the best they could provide from the Geneticist appointment from June. I was really surprised to get a letter from them with two possible explanations for Liviana's "collection" of issues (Congenital Diaphragmatic Hernia, Multiple Hemivertebrae, Ventricular Septal Defect and one Missing Rib).

The first is a vascular disruption between her and I at some point in the first trimester. I did have a freakishly low blood pressure at 7.5 weeks (60/80) but I don't know if that would cause a vascular disruption. I consider this to be the "we really don't know what caused it so we will call it 'this' explanation."

The next is called Spondylocostal Dysostosis (I have also found it listed as Jarcho-Levin Syndrome). The report says, "...after an extensive literature review, Dr. Olney suspects that a condition called Spondylocostal Dysostosis (SCD) may be a diagnostic consideration for Liviana". Further, "...we would like to stress that it is unknown whether Liviana's birth differences are due to a vascular disruption or to SCD. Genetic testing is available for SCD, if you are interested in pursuing whether this diagnosis may be correct for Liviana. If testing concluded that Liviana does not have the genetic change for SCD, then vascular disruption may be the diagnosis by exclusion."

The letter goes onto to discuss SCD in scientific, genetic detail. I really should have paid better attention to science class. Basically, because Brad and I don't have SCD that means that we both have an SCD gene (there are 3) that are working properly. If Livi did have SCD that would mean that both Brad and I are carriers or that it was an occurrence in just Liviana based on an abnormality in the sperm or the egg. It is incredibly rare and oddly, much of the literature I have read are case studies where the mom and the dad are related...hmmm, does someone have something to tell us?:)

So, what does this mean for Liviana? I don't know. She is perfect. She looks perfect and she is an absolute wonder to me. I am EXTREMELY concerned about her spine and the hemivertebrae. I am already seen signs of issues on her back (I posted about it on our blog but not here). I am terrified that she has a future that involves spinal surgery, rods or even a halo. I want to snatch her up and protect her from that ever happening. The outcomes for much of the SCD or Jarcho-Levin are not good but I would assume if she does have it that she is a mild variant and her mortality is not going to be impacted (can't believe I even have to consider that).

I don't know, I don't know, I don't know. My head is spinning. Livi has a surgeon follow-up on Monday, as well as the NICU Clinic follow-up. She also had an orthopedic surgeon follow-up on September 18th which I am REALLY anxious for. I wasn't expecting to receive something like this at all. We have to decide if we want to have her genetically tested for SCD. She has been tested for hundreds of genetic disorders but this one is so rare that there is one place in Wisconsin that can perform the test. The cost would be around $1300. The only reason I would want to test her is for her future, what she may still face and for her future children. I also plan to wait for our Ortho Surgeon appointment, as I think he will be a good judge of whether he is seeing SCD in her.

She is going to be fine....She is going to be fine....She is going to be fine....

I just keep telling myself that.

On a better note....Leah went home just one day after her second hernia repair surgery. Can you say warrior? She is doing well and wanted to celebrate her 3 year hernia repair anniversary by having another one on the exact same day.

There are a couple of CDH babes expected to make their grand debut this coming week (looks like they all like Monday). I will keep you updated and you can always follow their progress on the links to the right.

Please Keep Leah in Your Thoughts

2008-08-11T18:57:00.002-05:00

Leah turned 3 years old today and finds herself celebrating in a Children's Hospital in Des Moines. She was sent there today after a suspected reherniation of her intestines. Her mom said she had been complaining of her tummy hurting but would have moments of being fine. Her motherly instinct took over and she took her to the doctor to be checked out.

Leah had her initial repair surgery here in Omaha but they live closer to Des Moines now and they have another child getting ready to start school so they needed to be closer to home.

Please keep Leah in your thoughts and prayers. I will keep you posted.

Teeth!

2008-08-06T11:10:00.007-05:00

Little Miss has two teeth poking through on her bottom gum. She spends a lot of her day trying to find things to shove in her mouth and chew. I will *try* to get a picture of these new little pearly additions but I can't make any promises.

Liviana and I have a lot of conversations. She seems to have so much to say, and sometimes with such seriousness. She also expresses her displeasure quite well. She adores her brother and sister but sometimes they crowd her a little too much and she is quite clear about wanting her space. It is actually funny to hear her and see these outbursts of displeasure...It try not to laugh.

We had a few visitors a couple of weeks ago. My mom was here for a few days for her birthday and Brad's sister and nephew were here for almost a week also. We loved the company and they all of course saw the sweetness that is Liviana. It has been SO hot and humid here and we have not been outside as much as we would like. We met friends at the Splash Park last week and Aria and Miles had a blast. I took Liviana over to get sprinkled a little but that was all of splashing for her. She did look awful cute in her swimsuit.

Liviana is making moves to crawl but most of the time she goes backward instead of forward. She has this awkward side crawl, kind like a breath stroke in swimming. She lays on her shoulder and puts her little tush in the air and pushes forward. I have not doubt she will get the legs and arms working together soon though and be all over the place.

Enjoy the pictures. We seem to like polka dots around here. She is showing off a couple of her cloth diapers and covers. She likes cloth on her tushy :). The picture in the polka dotted dress if from my mom's birthay (Nonna).