Sounds to me like she really is a good neurologist. She definitely knows what she is talking about and giving good advice. I hope it makes you feel better at least knowing what you are dealing with, and having a plan for what is to come. This is such an awful condition...sometimes there is little that we can do.
You are doing all you can do for him. The rest we have to trust to God. We may not always like the outcome, but He is with us through it all.
By the time my Peyton was old enough and weighed enough, the damage was just too severe. He would have really suffered if I let him continue, and I would never want that.
Reading what your neurologist said makes me feel better. I kept wondering if something could have been done if they would have caught it earlier. It sounds like any earlier wouldn't have worked either.
My heart goes out to you. I will pray for Bubba and for you. I'm here if you need me.