Off to Maryland!
-11.14.21-
Hello Maryland!
Please pray for Isla as we begin a week long visit at the National Institutes of Health seeing specialists and Batten experts. It’s going to be an intensive week full of poking and prodding but Isla is in high spirits. Please pray for her. She’s so tough. While other kids are enjoying Thanksgiving festivities she has to be stuck in a hospital.
Even though there are still no treatments available for CLN3 Batten disease, this visit will allow us to meet and becoming familiar with the doctors who are working on our cure.
Thank you for the prayers and support! She’s GOT THIS!
-11.18.21-
My sweet baby bug.
It’s been a long difficult week. Isla is completely over all of the tests and pokes and prods. Each day I see her toughness and positivity dwindle. I can’t blame her one bit. This is so much to ask of anyone, especially a child. Even still she is far braver and stronger than I am.
As I type this Isla is going into her procedures. She is having an MRI, a skin biopsy, and a lumbar puncture. As they sedated her I had to watch from a monitor outside of the room because I couldn’t be in the MRI room with my pregnancy. Before she fell asleep she asked me if we could please go home . My heart breaks for her. No kid deserves this. No parent deserves this. I’m so thankful after this week we will be able to enjoy the rest of 2021 together at home.
Thank you for all of the prayers. I will update everyone when Isla is awake again. Until then I’m going to try to keep it together .
-11.18.21 update-
Look who’s awake!
She did great and is recovering just fine. She’s VERY loopy from the medication so she has us cracking up. She FaceTimed her dad to show him her new stuffed “sloth” (it’s a monkey) and called her MiMi and wished her a happy birthday (yep, her birthday is in June)
She is so excited to come back home to Texas tomorrow. The worst is over for our week at NIH, and we can’t wait to be back home and see everyone
