Today was the big visit. We got to the hospital and made the long trek to the clinic. (with a stop at the food court for Starbucks!). We got signed in and went to the waiting room. Avery was transfixed on Elmo.
Dr. Percy and Jane were late(but only by a few minutes)! We went in the exam room and got settled in for a pile of paperwork. Lots of questions with the occasional pause to play with Avery. Dr. Percy took her and sat her on his lap and loved on her. She gave him her customary "raspberry" which we refer to as her "happy noise". She started to get sleepy so we put her into the stroller and within minutes she was out. Jane measured her feet and hands and she was none the wiser. Jane and Dr. Percy were great and funny, kind of like a comedy routine. They were picking on each other and arguing the way I assume people who have worked with each other for 15 years would.
The nutritionist came in and talked about the importance of high calorie meals. The weighed her, measured her height and took 16 measurements on several spots on her body. They were testing her BMI. As of now her BMI is 15.1%. We did find out that she has fallen off every growth curve but none as pronounced as her head circumference. She went from the 50th percentile and 18 months to the 2nd percentile at 23 months.
I am feeling very mixed emotions about the visit. I guess deep down I hoped they would tell me the impossible, that Avery didn't have Retts. The visit overall wasn't what I thought it would be like, not in a bad way, just different. I didn't learn anything at the appointment that I didn't already know but, it was nice to be in a room of people who had Avery's best interest at heart. 
Thursday, May 8, 2008
UAB Rett Clinic
Posted by Carrie and Avery at 8:35 PM
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3 comments:
A friend of mine named Mary has a grand daughter that went to see Dr. Percy also. She had the same response that you did about being weighed and measured, but not getting much info. They wanted a prognosis since they knew what her mutation was, and Dr. Percy couldn't give one. With her grand- daughter's mutation, the child shouldn't have even been able to walk or do some of the other things that she could do, so he was quite surprised.
You should be proud of yourself for being so pro-active and learning so much about Rett SYndrome prior to the meeting. He probably did not have much new to teach you. I felt a lot like that to on our trip to Houston and the clinic there. However, since then it is SO nice to be able to pick up the phone and call out there for any questions we need, or referrals or Brooklyn's other docotrs can call out there and ask them quesitons. I am sure you will find Dr. Pearcy's staff the same way.
Avery - you are just such a cutie, I always love seeing your pictures. I am sure that they ALL loved you!
We send our love from Indiana!!
BIG HUGS...
I think I felt the exact same way after our appointment. I was glad we went but I didn't walk away feeling like I knew anymore than I already knew so that was a letdown. But I was glad to meet them and have them meet Riley and know they are only a phonecall or email away.
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