Welcome to Julia's Site!

This blog is made available for several reasons. First and foremost, to keep those that know Julia current with what is going on with her and her progress. It is also my intention to educate those who do not know Julia about what happened to her, so they can make educated decisions about their own children. I want to welcome those of you with questions about her disease, treatments, and just the general life (the good and the bad) of living with a brain damaged child. Finally, it is a therapeutic release for me, Julia's mom, Susan. I love writing and need to get some of this stuff out of my head and onto "paper". Thank you!

Thursday, March 18, 2010

So, Jack is sitting here learning how to use Julia's Talker! That is great! He is so smart, he will be able to help her use it once he catches on, which will be in about an hour....he is so great with her! he said he was very excited about the talker because he wanted to use it so he doesn't have to talk anymore.....i think if this is the case - that computer voice might drive me mental and the 8Kish device would be thrown out into the snow! haha! totally kidding......

We had an appt with our new physiatrist today - susan gallagher at childrens.....we are going to schedule some botox injections in her leg (two or three spots) to see what kind of response we get - under general anesthesia (well - gas mask if possible)......probably in the next couple of weeks. It is supposed to loosen up her tight muscles which are causing an internal rotation of her leg which may lead to necessary surgical correction of her hip and tibia (knee). Going the botox route first before major surgery is considered. Hip x ray is ordered....just have to schedule it. She is also going to be evaluated by neuro-psych for behavioral issues and learning ability assessment...will let you know when I get her in there. She also has to get refitted for a new brace soon. Will let you all know how all that goes.

Thanks for your continued support........this is tough stuff.....but i had a real nice conversation with two of my co-workers today (can you believe there are THREE of us with brain injured children in the same vet hospital?? amazing....people are brought together for a reason)....I don't feel so alone in some of the feelings i have - as these two other mom's shared many of my sorrows and sentiments....thank you to Shana and Laticia......you guys have done this longer than me - especially, you, Laticia - 21 years....wow....and still sane! :) And, Shana - I think you get where I am coming from. We LOVE those kids.

susan

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