Not that you guys are rolling in the dough (or time, or energy) for travel right now but I wonder what Detroit Children's Hospital's competitor facilities might have to say? Could there be experts in other cities worth consulting?

Found this listing: http://www.usnews.com/directories/hospitals/index_html/specialty+IHPGAST/state+/page_number+1/page_size+10/sort+/name+/metro_area+/zip+/distance+/detail+less

To be honest I thought Children's Hospital in Detroit was at the top of lists like these but they're not even on the list US News & World Report put out above. That surprised me a lot. Ann Arbor's C.S. Mott Children's Hospital is listed so I suspect you've been to see them already.

If there's one thing I know it's that we'd all pool resources in a heartbeat to get you guys wherever you needed to go (out of state or wherever) to find answers and experts who can spell the end of this ordeal for you. If you decide you need to hit one of these other healthcare facilities you know you can count on all of us to help in a pinch.