I am so sorry that such a medical problem came to your family. I am glad you found this site Debi, there are alot of compassionate folks here. I do know what the condition is that your child has, but not much in detail. I have a friend on site named SDFencer, who knows one of the best surgeons for brain conditions. His surgeon wrote a book, and teaches in Arizona I believe. Please do contact SDFencer. He may have some advise for you. Keep in touch with Neruo Talk. There will be people here that can help direct you in this time of need. I will pray for your child too. I came here in a crisis of my own two years ago, and never left. such was the company I found here. Please know, you are not alone. I know what it is to be a parent of a child who has medical needs. My daughter was such a child. I care. ginnie