We made history this week, first infusion is in the books!
The night before Mark and I could barely sleep, knowing that they would be accessing Claire’s brain, and putting something inside. No one knew what to expect, how she would feel, would it make her sick, have more seizures, make her throw up, there are so many possibilities.
This is not a routine procedure at our hospital, so seven people from many departments were In gowns and masks in a sterile room, I could feel myanxiety hit the roof. Trying to stay calm for poor Claire who was so afraid, was the hardest part.
Once the needle went in,very easily, and was secure, we spent the next 5 hours cuddled together watching Bubble Guppies and snacking on pizza.
Claire had zero side effects and wasn’t bothered by all the tape on her head.
We stayed the night, just on case, but went home bright and early after a solid nights sleep.
Our little Claire bear is the bravest girl we have ever known and we couldn’t be more proud of how she goes through so much and still stays so resilient.
It’s hard to think this will be our new normal every two weeks, but we feel incredibly lucky to know that we even have this option and will now fight for a cure for this terrible disease that takes away life far to quickly for our little ones.