Ok, so today was a follow-up at Yale. They did the standard questions and then asked what all we have been doing since the last appointment. So, I told them. We had been to Hasbro for a second opinion. Boy, that got the fire lit in Yale's pants. So, they asked all sorts of questions on what Hasbro thought, etc. Well, well. Looks like Yale might actually decided to be serious about this now and stop blaming me!
Anyway, they have taken a complete medical history of Alvin. It was then that the GI noticed the cafe-au-lait spots Alvin has. He asked how many Alvin had, which he has 16. So, that got the GI's eyes huge. Combine that with Alvin's abnormally large head and chronic constipation and well, we are off on a theory. What that theory is, they wont exactly say. But, they have scheduled Alvin for a barium enema with contrast next week, and have given us referrals to an endochronologist, a neurologist, and a geneticist. So, at last, we are on the track to figure this crap out. (No pun intended)
So, please pray for an actual answer sometime soon!
This originally was a blog detailing Alvin's journey through cranial banding. It's now about his life dealing with Neurofibromatosis, Dyspraxia, and Autism.
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