So here`s some of the newest information I have on my sister. For those who didn`t read my original post can read it here. My mom brought her in for some genetics research yesterday and they did some tests. Basically they found out that because the damage is so wide spread, they`re surprised she`s doing as well as she is with school type knowledge and things of that nature. It doesn`t matter if anymore chromosomes are missing at this point. We also know that things are considered bad enough that one of Amy`s doctors will write up a note for my mom to be excluded from any jury duty that may come her way because she needs to be readily available and there for Amy.
We are also looking into a hospital in Texas. Not sure if it`s for more testing or what exactly, my mom just mentioned they had been in contact with them trying to make arrangements to go over there.
Right now we need the BEST neurologist we can possibly find to help with her condition. They will probably have to be willing to experiment with various medications to get her condition under control. They are also thinking of what we`re going to do about her schooling. Her school she attends now specializes for special needs children, but because Amy has to miss so many days due to her seizures we`re starting to wonder if having someone come to the home on a regular basis would be better. But the time is ticking, money is a joke right now, and it`s just like a rush against time. Sometimes you feel like you`re getting somewhere, but when you get one answer it seems to be leaving you with more questions. My mom is going to talk and ask some questions to one of the doctors today and hopefully we get more positive information.
Thank you to everyone who has shared the story, continues to share the story, and has been there for support. It means a lot.