Medical Madness

I thought I would post the cover of the Washingtonian magazine. For those of you who don't know, that is Evan's heart surgeon, Dr. Jonas.

Last week Evan's doctor appointments started. First up was a hand surgeon, who agreed with the one we saw at Walter Reed: we need to pick a surgeon and stay with him for the next umpteen years. This doctor suggested we only go to the top surgeons in the country for this type of surgery (lengthening the ulna, centering the wrist, etc.). Only a few people have done more than a hundred of these. I guess it is a teaching case for these doctor's, so if they don't take our insurance, it may be free. Anyway, so we are waiting to hear from him if some of these surgeons are in an area where we might be moving to, or near family so at least I have some help watching Amelia if John is floating on a tin can.

Next week starts physical and occupational therapy. I am quite excited about this because they really know how to start helping out- with or without a surgery. For example, the surgeon told us to stretch his hand and didn't mention an occupational therapist. We saw one anyway and the therapist made us braces that really helped stretch him out. Why is there such a disconnect between the different health care professions? Anyway, the physical therapists will be helping out with his neck, too, which has been a huge concern of ours. Evan has many problems and I haven't blogged about all of them because, frankly, I'm don't much feel like talking about them all of the time. He does have an extra piece of vertebrae jutting into the rest, which is causing his back to curve. This may or may not be the reason he wants to keep his head to one side. We see the spine doctor next week, too. I will have to do an update after he's seen all of these doctors.

Good news is that we finally are able to pick up Evan under his arms again. We had to wait 6 weeks after the surgery for his chest plate to heal. Now he can start to hold his weight on his legs again. He was really good at that before the surgery, like Amelia, but regressed from us not being able to hold him up.

Other good news- I got to sleep for 4 hours straight last night!