Friday, September 21, 2012

Follow Ups

Yesterday, Matthew and I did a quick visit to the 2 Texas Children's campuses here in Houston. 

First up in the morning, Matthew had a follow up with genetics.  We were referred back to genetics by the vascular malformation clinic to see if there might be a genetic component to Matthew's feet edema.  I had forgotten how nice and personable Matthew's geneticist is, and how much time he devotes to the patient during the appointment.  We saw him for almost an hour.  In short, Matthew's duplication is so very large (64 mb meaning 64,000,000 base pairs) that it is difficult to isolate one thing in particular.  So, no answer for the swelling.  For the bulk of the appointment, we just caught up, discussing Matthew's many uniquenesses and detailing out Matthew's many accomplishments. 

He reiterated that Matthew is still as unique as they come. With the original karotype information, Matthew was 1 of 2 in the world with his diagnosis.  With the more accurate micro array information (4dup25q34.2q), Matthew is alone, even to this day.  Matthew's journey is totally uncharted.  He writes his own story.  And what an amazing story it has been. 

After the genetics appointment at main campus, we went to west campus to visit our GI.  He was hoping for a 3 pound weight gain since our last visit, but Matthew only gained 2. I was pretty jazzed that he gained 2.  This boy doesn't slow down or stop.  And he doesn't want to take the time to eat.  He is overly thin, and we are tasked with getting Matthew to eat more, and eat more fattening foods.  To now, we have been feeding him the same things we eat, where I hope not to gain weight and hope that he does-- I guess that's not enough.  The GI jokingly said we have 3 choices-- get him to eat more, get him to eat more fattening foods, or get him to slow down.  Since the 3rd choice is impossible, we will work on the first 2. 

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