Results from the Final Frontier

Yesterday we drove Connor up to Cincinnati Children's Hospital to see the team of specialists there. This was our last effort at finding anybody "local" (an hour and a half away) to treat him. We have seen specialists here in Louisville, but since SMA is a rare disease, it is hard to find doctors that have true experience with these kids and aren't just making their best medical guess based on something they went back and read in an old textbook. We'd been referred to Cincy Children's by quite a few SMA families, so we had our fingers crossed.

And it really was a great experience. Days before we even came, the "nurse concierge" called us several times to make sure everything was done and ready for our visit and to answer any questions we had. They sent us about 3 different maps to get there, and a welcome letter, and info specifically on our specialists. We got there at 1:00, and left at 5:30 having only seen two (neurology and physical therapy) of the three people we were supposed to see. That sounds bad, but the reason is that they were very thorough with us and just spent tons of time with us going over things and answering any questions we had. In the waiting room there were tons of toys and people to just play with your child (no joke--I think they were students)...so we could sit and relax for a few minutes. Then they had a toy cart with lots of toys in the hallway by the rooms so you could keep your child happy.

Neurology was great--Dr. Wong has seen lots and lots of SMA kids and told us "the type 1s usually react this way to this, but the type 3s do better with this." Physical Therapy made some great suggestions on his walking, and said with this specific adjustment to his braces they have seen some type 2 kids walk that never walked before--sooooooo exciting. Connor did walk and can with his braces now, but with this new part they said he would hopefully be able to stand alone without the walker. The third specialist, nutrition, is going to call us on the phone, and they are going to do some more labs and x-rays that they're going to let us complete here in Louisville and have sent up. Halfway through the appointment, Adam looked at me and said, "Well, I think we've found our new doctor" and I truly agree.

The only downside is that they suggested a power wheelchair for him, instead of a manual, so we are just back to the drawing board on that. But I guess we'll figure it out somehow--just like all the rest of this!