Getting into a Routine at Home

It is so hard right now to answer the popular question of how Gracie is doing. She is doing well in so many ways. She is giving 100% in her daily therapy and we are truly seeing daily progress. She even surprises herself with what new skill or movement she can do each day. Gracie is also improving in her endurance with her exercises. She is more willing to sit in different positions and for longer periods of time. Because of the generosity of all of you, I have been able to keep her attention while she stretches and sits with new toys, activity books, crafts, and DVDs. Because we want her close by, we have moved Gracie's bed into our bedroom. She is so thrilled about that! I continue to remind her that this is temporary.

We have had a few visitors. Gracie enjoys company because it gives her a chance to show off what she can do in her wheelchair. It also breaks up the day a bit. I have told anyone who wants to visit to please call first and to understand if you get here and she has a breakdown. Gracie has about 3-4 episodes each day where she just cries and claims to be itching. The itching is almost more than she (and I) can handle. It usually lasts about 20-30 minutes in the backs of her legs. She cannot get relief and begs me to scratch as hard as I can. We have tried many approaches to relieve the itching and/or redirect her attention or calm her. I spoke to someone in the neurosurgery department in St. Louis today about this. She said that some tingling in the legs has been reported by children who've had the rhizotomy but nothing like this. I plan to call Gracie's local neurologist and possibly her pediatrician tomorrow to get their advice. At this time, the severe itching is the worst part. When she is not itching, she is happy, energetic, motivated, and loving. I am thoroughly enjoying the time we are spending together.

Thank you all for keeping up with Gracie's progress!

Note: The pictures on this post are from the hospital. Gracie absolutely loved having her hair washed in a shampoo bowl! I definitely see spa visits in our future!