Home Almost a Week

We've been home from St. Louis almost a week and things are starting to get easier. Gracie's back is not as sensitive and she has not had any itching or pain in her legs since Thursday night!! After speaking with her neurologist here and getting his input about this problem with her legs, we started her on a drug called Neurontin. It is helping with the itching/tingling sensation Gracie is having in the backs of her legs. We hope she will only need this for a week or two. We have also given her some Benadryl, but we are careful not to give this around the time of her therapy so she won't get drowsy. I have been e-mailing another family whose son just had the rhizotomy in another state. His doctor actually started him on Neurontin before the surgery and he has not had any itching in his legs. It has been helpful (and interesting) to compare stories with this family.

Therapy has continued to go well. Gracie works very hard. That's good because she is determined to do the things she could do before surgery and doesn't like not being able to do something. She has been using parallel bars in therapy to help her legs get the feel for walking. Her legs muscles are still too weak for her to try this without the bars. Gracie is now comfortable sitting independently; she just wants someone nearby. Her favorite activity right now is taking a stroll around the neighborhood in her wheelchair. As much as I love her therapists and watching her progress in therapy, it is nice to have a break on the weekends.

It is hard to believe that Gracie will be 4 years old in five days! In some ways time has certainly passed quickly. Many of you have asked what we plan to do for her birthday. We usually have a large group of friends and family come to our house to help her celebrate. Because of her condition, we believe it might be best if we just invite family this year.