Cue the Frustration

I’m going to write this blog post as a “Positivity Sandwich”…so here’s some good stuff.  I think being around such a massive family during Christmas in Florida helped Nolan tremendously.  Why?  Because people eat…and a lot of people eat a lot.  There must’ve been like 32 people sitting at the table in the dining room whenever we’d eat together…and I really think Nolan felt left out after seeing everyone eating while he’s on a feeding tube.  So once we got home, he’d pitch an ever loving fit whenever he’d see one of us eating something.  That, and he’d try to reach for it.  So we obliged him with whatever we thought was soft enough for him to handle: cheesecake, baby food, yogurt melts…you name it.  And he ate it!  Granted, it wasn’t a huge amount, he’d eat pea-sized amounts each time, but this was a HUUUUUUGE turn in the right direction.  Prior to this, he’d been doing tons of swallow therapy but showing no interest in eating.  We determined his favorite thing to eat was veggie straws, because he can hold them in his hand and they dissolve easily in his mouth.  Win!

Good news, right?  Now for the URRGH stuff.  Sometime back when Nolan was having some ear troubles, my wife took him to our Pediatrician’s office.  Unfortunately our normal doc wasn’t available so Nolan saw another one.  He said something to my wife along the lines of, “Did you know he’s got a submucosal cleft palate?”  WHAT?  What the heck is a submucosal cleft palate?  We’d look in his mouth and wouldn’t see anything.  Even my father in law looked his mouth and didn’t notice anything.  Heck, his cardiologist made a confused face when we mentioned it to him.  So we made an appointment with a cranio-facial surgeon to take a look at him.  That appointment, due to Nolan’s flu issue, didn’t happen for awhile.  It happened in January 2014.  My wife took Nolan and it was confirmed.  He had a fissure in his submucosal cleft…but the doc wanted him to keep doing speech therapy and come back in several months.  I’d be lying if I said I had ANY kind of positive/hopeful outlook about this.  I was extremely frustrated and deflated.  Nolan was doing so well…his heart was functioning great and he was making some strides with eating.  Now this.  Would he require surgery?  We didn’t know.  How would this affect him long-term?  We didn’t know.  All we could do was wait.  I remember being in my office when my wife called me with the news and I was just overwhelmingly sad. 

Now back to the positive…after all, I’m an optimist by nature.  The good thing about taking some time to think on things is that it lets you look more “big picture.”  I did some research on the interwebz, and even chatted with a physical therapy manager about Nolan’s condition.  I learned that there were techniques to feeding kids with this condition that could be very successful, and that this could’ve been the cause of his difficulties feeding in the first place.  Interesting.  While I’m still amazed it hasn’t been caught for like a year, I’m glad they found out.  If Nolan does have to get surgery, that’s gonna be horrible and I’ll be sad…but long-term it should help him with speech and eating.  There are also lots of people, I learned, who get nothing done.  They learn feeding techniques and learn to speak just fine.  So we’ll see…and we’ll hope…and we’ll pray.  Without that, the negativity will eat you alive.  So here’s to hoping our little fighter continues to beast his way through all this!

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on February 5, 2014, in feeding, life and tagged , , , , , . Bookmark the permalink. Leave a comment.

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