Saturday, February 13, 2010

Katie's Clinic for Rett Syndrome at Children's Hospital Oakland

We had our long awaited appointment today! Thank goodness they will provide a written report because it was a whirlwind! Avery did so well-Im sure she loved all that attention!
Every single specialist we saw was a warm, caring, knowledgeable person! All knew Rett inside and out and all were so impressed with miss Aves!
First we talked to the OT and nutritionist. We got some great feedback about her hand use and chewing skills which was very reassuring. I got some awesome info from the nutritionist about ways to get more calcium in Avery's diet without dairy. Its amazing how ingrained "good eating" can be-I forget that I can TRY to put more fat in her diet!
Then we saw the physiatrist who was very nice. she checked Avery's spine and said its very straight! No signs of curvature! Phew. We still have the xray to look at. She also told us we should go ahead and get the inserts or her shoes-the more support we can give her ankles early the better. So I am going to order those. I am so glad we brought the ekg results- I was able to give them the original for their doctors to look at. The PT was so nice and she was the most amazed at Avery's gross motor abilities. She gave me some great tips for making sure her IEP goals are appropriate and to focus on goals that bring her to a "typical" level (rising a trike, jumping etc). Then we saw Judy the communication specialist. She gave us several ideas about new things to try. She also thinks we should get an OT evaluation by someone with a sensory specialty b/c Avery is so unregulated. Maybe some therapeutic listening or something. I have to get looking into that. I cannot wait to get her report and share it with school! I hope they will be receptive. We also got to speak with Dr. Suzanne Davis the ped neuro. She was very nice and gave us some good feedback as well. We are going to cancel/put off her 24 hour eeg. We dont really think there is any true seizure activity going on so its really not necessary. I was glad to get her Ok on that.
What a wonderful service they provide to so many families. Katie's clinic is a warm, caring place where you are surrounded by people who know Rett Syndrome in and out! It was awesome. Well worth it. thank you!!!


Ann Marie said...

I'm so glad you all had such a great visit. It sounds like a awesome clinic! It would be nice to see so many specialists in one trip. Do you plan on making regular visits there?

Kelly said...

YAY!!! Sounds like an amazing esperience - isn't it so wonderful be around doctors that understand Rett Syndrome - it is just such a relief!!