DC Metro Mom

Well, we've gotten some interesting news about Walter.  We found out on Tuesday that he has a sub mucous cleft palate.  Here's the whole story...

I had a growing concern about Walt's sleep apnea type episodes.  It's scary when you're holding him and you realize that his belly is moving up and down but he's not actually taking breaths.  After a few seconds of this, he finally takes a huge breath and regulates himself.  Terrifies me.  So I made an appointment with a pediatric ENT.  He looked at his tonsils, which didn't look too large, and said he'd like me to take Walt to a cranio-facial plastic surgeon to assess the severity of his Pierre Robin Sequence (small recessed chin and jaw).

Luckily, we got in right away.  He determined that while he does have Pierre Robin, it's mild.  He does not think we'll have to do any type of jaw distraction or anything.  However, he took a look at what we were always told was a "high palate".  He told us that what he actually has is a sub mucous cleft palate which can be hard to see. It's a separation of the soft palate but it's under a  layer of mucous that looks like skin.  Definitely has played a part in his feeding issues, the reason liquid comes out of his nose, possibly why he snores so much, etc.  

Both doctors recommended that Walt have a sleep study to determine the severity and reason behind his apnea episodes.  I'm not sure when that might be but I hope it's soon.  I think the doctors are waiting for the results to determine the next step in treatment. I'll be sure to keep everyone updated.