I took my 2 cuties out for a walk this afternoon to enjoy the beautiful day. I happen to catch them looking very alike and was even able to catch a picture of it on my phone (sorry for the poor quality). Excuse the socks, yes- they are socks, on Reagan's hands. She now puts her hand in her mouth non-stop, which breaks down the skin on her hands and around her mouth. The official Rett term is called "mouthing" and it is one of the many stereotypical hand movements that the girls can make. Reagan started mouthing about 6 weeks ago and it started as being barely noticeable. However, within a month it had become so frequent that it began impacting her ability to focus and feed herself. We recently discovered arm splints and she wears them for a good portion of the day now. They look similar to a cast and keeps her arms straight so she can't get her hand to her mouth. I was very hesitant at first to use splints but after seeing how much more she can focus when she isn't so intent on mouthing made me realize that it is for her own good.
Hi Dawn, I am also in austin. Would love to chat if you like. We have a little girl with Rett Syndrome, she is 8. A few of us get together a couple of times a year...
ReplyDeletecourtney.wyrtzen@gmail.com
dawn-what a cool pic! so cute. if it helps, Avery mouthed for a short time-then it changed to her current hand slapping and tapping. so while its still annoying and gets in the way of stuff, it is better than having her hands in her mouth! so hopefully she will start doing something else soon!
ReplyDeleteAw, what a couple of sweeties you've got! Hugs!
ReplyDeletelove the pic glad you were able to capture it
ReplyDeleteI heard about a place called "Thoughtful House" in town... they assist with various things so I wanted to share. I'm going to do some research for Savannah's allergies.