We did not learn as much from today's trip as we did yesterday, but the genetic/metabolic doctor did order some labs. She had reviewed the million pages of lab results from Mayo (and before) that I faxed/hand delivered, and she only had one idea. The doctor wanted to retest Allison for Congenital Disorders of Glycoslyation, something I thought we had ruled out in February. Apparently there is more elaborate testing done for this disorder that was not available in February. This is not a good disorder to have, so I will be relieved when the results come back negative in about a month.
We do have some big appointments coming up. Allison will be seen by her GI doc in Kalamazoo on Monday, then her neurologist on the 21st, followed by her Baclofen injections at Mary Free Bed on the 28th. Until then there is PT and OT three days a week. She continues to gain skills and strength, so we focus on those positives on days like these. One thing is for sure: the kid is a fighter!
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