This originally was a blog detailing Alvin's journey through cranial banding. It's now about his life dealing with Neurofibromatosis, Dyspraxia, and Autism.
Friday, June 26, 2009
Appointments, appointments, appointments
Ok, so we have the genetics appointment scheduled for July 6th. On July 7th, we have to go to have an abdominal x-ray done, then meet with the surgeon to discuss the biopsy. From what we understand, the biopsy will either be performed on Thursday or Friday of that same week. So, that week will be busy, busy, busy. Please, keep Alvin in your prayers. He really needs them.
Monday, June 22, 2009
Getting somewhere
Well, we have a genetics appointment. July 6, we will be going down to Yale Genetics. We were very lucky to get that appointment. The geneticist only sees new patients once a month, and they were full until the end of September. Luckily, someone one cancelled and they are able to get us in in just two short weeks. So, here is to hoping that the command will allow Eric to have that day off.
Also, GI is going to perform a rectal biopsy on Alvin. Great, he is going to have to go an be put under and intubated again. Fun. Here is to hoping that can be scheduled while Eric is in port. It would suck to have to go through that without Eric being home.
But, we are on the road to finding out, once and for all, what is wrong with Alvin. It's only been a year, but whatever.
Also, GI is going to perform a rectal biopsy on Alvin. Great, he is going to have to go an be put under and intubated again. Fun. Here is to hoping that can be scheduled while Eric is in port. It would suck to have to go through that without Eric being home.
But, we are on the road to finding out, once and for all, what is wrong with Alvin. It's only been a year, but whatever.
Thursday, June 11, 2009
A small step in the right direction
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!
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!
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