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!
Check up DAY!
3 weeks ago