This afternoon, without notice, two nurses came in and said we had to move rooms…right now. 😳 “Is this normal procedure?” I asked the nurse who was already in our room at the time. She informed me that we were apparently in an adult room and because a baby room became available we can move there.
Now let me back up for a second. When we first heard of gene therapy here in Italy in June we heard tales from other families of the isolation rooms being called “the box” due to their tiny size and the fact that you are stuck there for 40-60 days. So, of course, I was pleasantly surprised when we arrived to our isolation room on September 26th to find a quite spacious room with two large windows and distant views of the Alps. I wasn’t sure what all the previous fuss was about.
Once I walked into the new room I knew it immediately. It was THE BOX. It is half the size of our old room, has a smaller bathroom and there is only one window with views of a hospital building roof and apartments across the street. Ugh…
It also has an adult size mattress (in length) in the crib so the electronic bed has to push the mattress vertically at one end. The mattress is also a little thicker than the baby mattress we had in our original room (which we were told we could not get back because it had to return to the pediatric ward), which means Keira (who is now standing up constantly) is a little higher in the crib and there is no way I’m stepping away from her while she is standing in it. After asking a resident about switching the mattress I was then told these are the mattresses they use even for babies. Hm.
So after a disappointing move, we ate dinner via video chat with Dave, the girls and my Mom and Dad, then had a call with the Arizona Early Intervention Program back home regarding Olivia.
What we thought was a regular check up meeting was apparently a meeting about transitioning her out of the program at age 3 (next summer) and moving on to preschool. 😳 Uhh what?
They jumped right into what preschool looks like for special needs children in our school district…4 days a week for 2-3 hours each day whether it be PT or OT needs and having socialization with other children. And possibly being strapped into a school bus in a wheelchair for transport there. No. No. And no were my first thoughts. I immediately started sobbing, sitting in the box, holding Keira, with my microphone on mute.
I wondered if they fully grasped what shape she is in and at what stage of this disease. Olivia can’t walk, she can’t talk, and she is often in pain and is very particular about who holds her. She currently doesnt even have a chair or other place she can sit by herself because she can’t support her own body (we are in the process of getting one customized for her). So, exactly, how could she go to school? Would she even let a stranger try to comfort her? Would this teacher even know how to calm her down when she is in extreme pain? And being around other children is in and of itself a problem. Coronavirus aside, any cold or illness she could get can progress her disease overnight. It could hospitalize her and put her in far worse shape than she is already in. And shipping her off on a bus, helpless and alone? No way. Just imagining all of that was too much.
It was not a call we were at all prepared for nor thoughts we were prepared to face. While we still have time to decide what life will look like for Livvy once we are back home, it is daunting, scary, sad and overwhelming to think about her future and it being cut so short by this terrible disease.
While we pray for a miracle, we hold on to hope that the treatments from her clinical trial begin to make at least some difference. Because MLD can progress so quickly we truly have to take things day by day. And while her future may not include traditional schooling, we know it will always include as much joy and love as we can possibly give her.
6 thoughts on “The Box & Livvy’s Future”
Your new box does look quite small but it won’t be for long – the destination at the end of this journey is the prize – getting Keira heathy – sweet Olivia – bless her heart looks like you just need to take one day at a time – God is in control –
You all are sooo loved and blessed beyond measure. Love you all
Kendra my heart goes out to you today to have all of this happen in one day. Your new room definitely looks small. I’m a bit surprised they made you move while in isolation. I guess the good news is you weren’t in this room the whole time but it still sucks. In regards to Olivia’s school situation, I see it as the system needing education. Right now they are just checking off their boxes and have no idea about MLD and how rare diseases don’t fit their boxes. This isn’t a new thing. Many a parent has had to educate those “in the system” that they have to think outside the box. MLD Foundation can help you with this and we have a board member who lives in Scottsdale who can help you with the system. Her daughter was home schooled the whole time with teachers and OT/PT coming to the home. Let’s talk about how we can help you get what you need for Olivia. We’ll be praying Keira continues to fly through her treatment and you are out of that room sooner rather than later. Hugs and prayers!
Thank you so much Teryn! That would be wonderful to have your help! My immediate next step was going to be asking your Facebook group how they have all dealt with this. It’s beyond a unique situation for sure. Hugs from Italy! ❤
Sending love to everyone 💕💕
Together we will ensure that our Precious Livvy has the best care and life possible! You have a great support team! 💕
Thinking of you and Keira in that box!!! I am hoping someone has changed that mattress by now and that the people back home will realize Livvy’s condition, she is so precious, as all your children are. Love the pictures Kendra and all your updates, prayers continue daily for all of you, sending love… wrapped in peace and hope……Uncle Jim and Aunt Judy