(off topic) MY DAUGHTER EMMA
Sorry to hear of the trouble, we had problems of our own son that required surgery at 7 months of age for skull reconstruction. At three years of age now he is doing fantastic and better than any other kid(of course :D )
I cannot give enough credit to the Childrens Hospital in Calgary. There are some very special people working in these places. I hope you have gone to one, and please get a second opinion.
I wish you all the best.