Updates

First and foremost, we are home again!  We are so excited to be back together as a family and in a normal routine again.

In other news…

Gabe was scheduled for a swallow study on Monday but it got cancelled and he had another esophageal dilation instead.  Gabriel’s esophagus had held the stretch from the last dilation, 13.5 mm, and the surgeon was able to dilate it to a 14.5 mm.  The surgeon told us that 14.5 mm is the right size for Gabe and since he’s holding the measurement between dilations, we are moving the dilation out to every 3 weeks!  Twelve down, hopefully less to go!  Progress, wooo!

I was finally able to talk to the neurosurgeon on Tuesday and find out the results of Gabe’s MRI.  The MRI showed a few different brain abnormalities, all are associated with CHARGE.  He has some crowding in the back of the brain which makes it difficult for the fluid to drain properly, resulting in the moderate hydrocephalus.  The neurosurgeon predicts that eventually he will need a procedure to correct the drainage problem.  There are 2 different procedures that would alleviate this problem.  The first option is a shunt that would empty the excess fluid from the brain into the abdominal cavity.  The second is an Endoscopic Third Ventriculostomy (ETV), which is procedure where they use a camera and go into the 3rd ventricle of the brain and poke a small hole that would enable to fluid to drain properly.  The surgeon thinks that an ETV will work well for Gabe because he doesn’t need another foreign object in his body, like a shunt.  The MRI showed that his optic nerve is very small, but since his vision is fine that shouldn’t be a problem now.  Also, his corpus callosum isn’t fully formed which could affect his speech development.  So, no real good news but nothing emergent or terrible.  We’ve learned that life is easier if you take the punches and roll with them, and thankfully this punch didn’t hurt too bad.

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