Thursday, August 13, 2009

Life at Mayo

Dr. Driscoll (Physical Medicine and Rehabilitation) and Dr. Lindor (Genetics)

More labs

It's been incredibly busy here at Mayo. William has had some very early mornings, fasting, but he's done great! I think he is starting to tire of the the whole routine, though. When we walked into Mayo this morning, he started crying. He did calm down and was able to complete his round of appointments today.
Basically, we've learned nothing so far. Just lots of consultations, history, examining, and testing. Dr. Kotagal, the neurologist, has some specific testing he wants to run, but it can't be done until next week. We are checking with our neurologist at home to try to run this battery of tests there instead of staying 5 more nights for one day of testing. He also really wants an MRI done and when we told him that could not be done without removing the CI magnets from his head, he insisted there is a way. He is checking with a colleague to find out how to do it, but I called William's surgeon back home who advised us NOT to try an MRI without removing the magnets first. It is just too risky. He said to give the neurologist his cell number if he persists.
Tomorrow is our last round of appointments. We should find out the majority of the test results. We see PT first thing. Dr. Driscoll prescribed some braces for William that we will have to get when we get home. She also wanted us to see PT tomorrow to explore the possibility of a different walker. She gave us some very specific instructions for PT and OT to start as soon as we can find therapists capable of her instructions.
We may not have a diagnosis when we leave, but I feel that we do have some valuable information and direction that will help William. Now we just need to find the kind of therapy at home that he needs.

"Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." Psalm 27:14

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