Dear Liz,
The late Dr Fred Epstein who pioneered numerous techniques in pediatric neurosurgery started this facility for children.(1)..I hope they might be helpful. There is an organization that helps with financial issue for those who need it (2)
http://www.nyneurosurgery.org/
http://www.needlers.org/whowehelp.html
I will, of course,keep Kyle in my prayers,
Marcia