Wednesday, May 23

5/23. Cleveland trip update

We had a good visit at Cleveland (Dr. Cohen for metabolic & Ghosh for movement disorders) and will give an update later. The short of it is we really didn't learn anything new (nor did we expect to). It did confirm we are on the right track by looking at a metabolic disorder. They fortunately aren't pushing for a muscle biopsy yet and they understand why we don't want one. They wanted to repeat a few of the blood labs and we'll get results on friday and set up a coarse of action accordingly.
For now we are stuck on a plane in oklahoma city. Bad weather in kansas city required us to divert the storm but we needed to get more fuel to do so. I guess that stuff's important for keeping the plane aloft. Anya has been great traveling. She's sleeping right now..

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