OT yesterday.....fun times ahead!

So, Julia got to see Kevin yesterday, her favorite OT. We worked on her taking off her shirt and getting it back on "by herself". Once you help her with one arm, she can generally do it - but it takes her about 5 minutes and there lots of crying and frustration involved. Kevin is really happy with Julia's progress with more "planning" rather than random spreading of toys and little organization of her thoughts like she had a year ago. She's not perfect, by any means, but he said he can see her really "trying" to take things a step at a time. Her left hand and arm are still causing her difficulty. I mentioned that Dr Gallagher mentioned "restraint therapy", which we tried last year with a removable cast for her right hand, which was supposed to force her to use her left hand.....and it did - it forced her to use her hand to remove the removable cast.....SO.....

We talked about casting Julia's right hand and arm with a REAL nonremovable cast. The cast would stay on for about three weeks at a time and we would work on OT stuff pretty intensely for that period of time - two sessions a week. (Here is where I need a body double, or not to work full time). He said it will be extremely frustrating for Julia which means for us at home as well - as the crying will be pretty constant....BUT that he has seen some amazing results when this is done. So, he is going to talk to Juliette, her PT, and decide when we should do this....right now, the botox that was done on Julia's leg should be kicking in pretty good - so we should probably concentrate on PT for now, and then move on to the cast and OT later. Kevin is so awesome with Julia. He looked at me and said she is one of his favorite patients, because she is always so happy to be there (most of the kids are not), and that she makes him smile and remember why he went into this field. He said regardless of how far she comes, she is happy, and he said that says a lot about her life at home and outside the clinic. He said thank you for keeping her happy and not "working her to death" like many parents sometimes do - that we seem to have a real good balance with working with her and letting her be.....letting her be a kid, and letting her be herself, regardless of her diagnosis. Kevin is so awesome.


Will keep you all posted on her next steps - hopefully her new brace for her leg will be in next week.
Susan