This morning, Dave and his Mom, Tammy, left for Italy with Eva and Keira for her 6-month post gene therapy check up. I’ve been dreading splitting up the family for this trip but it was the only way we could make it work. The trip would have been too hard on Livvy. So off they went. And I cried like a baby.
It will be nice for Livvy and I to have some quality time together but I will definitely miss my other girls (and Dave too). 😊 Thankfully, my Aunt flew out to help me take care of Livvy since it’s nearly impossible for just one person to manage her care.
As for Keira, I’m actually not really worried about her check up. She has been developing normally and is even advanced for her age in some areas.
Her treatment itself was done on our inital trip but they recommend check ups every 6 months that will eventually turn into every year. What they are mainly checking for is a complete lack of ARSA antibodies (and any symptoms of the disease). At her 3-month check up before we left Italy in January she still had some antibodies (her body’s way of fighting the ARSA enzyme that her body never used to create before gene therapy). So they need to ensure those are decreasing or completely gone.
Here is what they have on schedule for the next two weeks:
- Neurological evaluation
- PT evaluation
- Psychological evaluation
- Blood chemistry samples
- Abdominal ultrasound
- Visual and auditory checks
- Bone marrow aspirate
- Lumbar puncture
- Endocrinologal visit
It’s a lot. But really there’s only one day with sedation and the rest is spread out throughout the two weeks so they’ll still have time to relax and see a couple friends between those rainy days in Milan.
We’ll continue to keep everyone updated! Send all of your good thoughts and prayers Keira’s way! ❤🙏🏼