Sunday, August 3, 2008

SRSA Conference

We are here in Birmingham and attended the Southeastern Rett Syndrome Alliance Conference yesterday. It's always nice to hear from experts on Rett Syndrome and get together with other families going through the same thing we are going through!

I also got to meet Avery, Carrie and Gigi! Avery is so adorable and a big bundle of energy!

I really got a lot more out of the Chicago conference but I was glad to listen to the session on nutrition again. We feel like something is going on there with Riley - she just has so many episodes of crying where she seems like she's in pain but won't eat and we don't know what's going on.

Another great session was about using cards for communication, at least as a place to start. We really need to get started on the yes/no cards and I don't know why we haven't yet. If we could get Riley to communicate somehow I think it would be a HUGE help in how we can help her on a day to day basis.

The sibling panel was emotional as usual and I'm sort of glad I had to step out to help a crabby Riley during the last part of it when I guess it got really emotional.

After the conference we ate and then enjoyed the tax free weekend in Alabama to buy Addy's school supplies. She starts Thursday, I can't believe it!

1 comment:

Brooklyn said...

I am so glad you got to go to the conference! I also wish I could have been there with you guys too! I agree, once RIley gets the yes/no cards I think she will feel so empowered to be able to start better communication with you. Of course do not get discouraged - it takes time and there are still days that Brooklyn does not really use them but about 80% of the time she is right on which makes a HIGE difference with her expressing what she wants/needs.