Hi Laurin,
My heart goes out to you as the mother of a child with this condition. I am with Kaiser in northern CA. I had an MVD done within their system. You can petition Kaiser to allow you to seek an outside specialist. I do not know how to do so, I just have heard from nurses that it is a possibility, if Kaiser cannot provide the adequate level of expertise. Having family who worked for them, I know that they outsource entire specialties in some circumstances. It depends.
If you have any questions in regard to MVDs, let me know if I can help. I am on sporadically, so it may be a while before I post back, but I will try to remember to check in in the coming weeks.
Again, , but you are not alone as long as you have us.
Lily