So far today we’ve met with a neurologist, Dr. Rothman, and a social worker, Marie. Dr. Rothman took a look at Armand, got some case history information, and is going to look at his MRI. Aside from that, he had little to add; he did, however, show some appreciation for some of the work on GM1 by doctors at Children’s Cincinnati.
Marie gave us information on what things would be like during our stay should we go ahead with the transplant. I will pass on more specific information to family, but we finally did get some quality of life questions answered, at least as far as during immediate treatment. Unfortunately, it did raise a few more questions.
We are currently struggling with a recently awakened child who is kind of bored while we wait on our final appointment. More questions? More answers? More options? More research? I need a nap myself.