Hi,
Welcome to the site. I have gotten many ideas just from reading the different posts here. If it weren't for this site, there are many questions I would not have thought to ask Bek's doctor.
I don't know if my daughter has Arnold Chiari Malformation or not, but I was diagnosed with it in 2000. However, I didn't have to have surgery to drain fluid, so my case doesn't seem to be as severe as your daughter's. Is it hereditary? I had actually forgotten about it until I read your post. Guess I had better do some research.
Again, welcome to the site.