Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, January 8, 2010

Rett Clinic

Abby had her appointment at the Rett Clinic in Birmingham this morning. The appointment went really well. She looks so darn skinny, but she has actually gained weight. She has also grown 9cm since her last appointment in June.

It's always nice to talk to Jane Lane and Dr. Percy. They have so much experience with Rett Syndrome. They gave me some great ideas for her to work on with her OT, and encouraged us to continue trying to get her to finger feed. Last December, she was able to pick up goldfish or snacks and put them in her mouth independently. She would miss sometimes, but she did very well. Over the past year, she has almost lost the skill completely. She reaches for the snack, but she doesn't seem to be able to close her hand to pick it up. Her hand function has decreased quite a bit. Jane suggested working those skills with her hands that she was once able to do more often than working on skills that she has never mastered. It makes sense that she would be successful at those skills first. I honestly had resigned to the fact that she wouldn't be able to do it anymore, so it was the encouragement we needed to start practicing again.

We also talked about her reflux. They suggested we get an upper GI done to check out what is going on, in addition to the swallow study she is doing next week. They will both give us information about her digestion. I'm just happy that, despite the fact that I don't know what to feed her that is not going to upset her reflux and that will help with weight gain, she is still gaining weight.

Anyway, two days of driving has worn everybody out around our house. Abby liked having her video in the car, but not for 7 hours. She was very glad to get home and play with her toys. I think was having withdrawal from not being able to push any of her buttons. The clinic is great, but it's definitely good to be home.

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