Calling all pediatric PT experts!!

We need one for Jordan and we need one now! I just got back from an apppointment with a physical medicine and rehabilitation doctor in town. He and a team of people met with us in the PM&R clinic to talk about Jordan and check her out. The poor thing was hungry and tired and just not really into being in that very bright room.

So during the meeting with a bunch of people including prosthetists and doctors, Jordan got really upset. She was overstimulated and tired. So I told them she'd calm down if I fed her a little. So they all leave the room and I started feeding her. I could hear them in the hallway talking about how we don't live in the right town given the kind of therapy Jordan needs... We have to drive 2 hours to the nearest city... Or even further to Chicago. That made me sad. I want to give Jordan the best care possible... and what is possible isn't that good.

So when we continued the meeting, we poked around on Jordan a little more, but she ended up falling asleep on my shoulder. We talked about how Jordan needs PT before she gets fitted for the prosthetic... That's going to delay the fitting because there aren't many pediatric PT folks in town. The one I know about is not under my health care plan. So the doctor and our prosthetic guy are going to start calling around across the state for help. The doctor wants a month of PT before the fitting. I want a fitting ASAP. So hopefully we can get things moving... and if I have to drive all over the country, dang it, I will.

I'm a little perplexed about what to do. I know there is at least one other child in town who does not have a part of an arm... Actually I hear that child is missing both arms below the elbow. How is he or she getting proper PT? I feel like I'm treading in untouched waters and there is no guide. And I will be so upset if I do something wrong.