Finally, a smooth treatment!
We are so excited to know that this time next week we will be in Orlando at Give Kids the World, enjoying some much-needed downtime. Claire hasn’t had much interest in food, and we can’t figure out if its her appetite or if she is unhappy with her new school schedule. Either way, she is not getting enough calories in and becoming weak, and that’s the last thing we need. She is already so tiny and small. We are hoping that the excitement of Disney and all the distractions of our holiday will spark her appetite and make her want to eat again. If not, we will have to start working with nutritionists at the hospital and even discussing a g tube option because we can’t let her lose anymore weight and she needs energy.
Her seizures are better under control, but sometimes it just feels like, if its not one thing its another. This trip couldn’t come at a better time!