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Monday, January 28, 2013

Cleft Team



Last Tuesday my husband and I took our son to All Children's for a round of appointments with various specialists.  This process is called a "Cleft Team".  We began the day with a hearing screening, then moved to a different building, where we sat in a room and the specialists rotated through to see us.

The state of Florida formed the team concept originally for all kids born with a cleft, because it is a lot to keep up with, and it's difficult to know when they need to see which doctor or specialist.  We will meet with this team every 6 months to a year throughout his childhood, to make sure we are doing what we can to best support him.  Shortly before our son was born, the state (in all its infinite wisdom) decided to limit the team to people on Medicaid, and those of us with insurance had to fend for ourselves....but that's a topic for another day.

All Children's Hospital recognized that people with insurance may need help in keeping all of it straight too, and formed a team for the privately insured.

We saw a Pediatrician, Pediatric Dentist, Speech and Language Pathologist, Social Worker, Audiologist, our Surgeon and his Nurse.  Phew!  By the middle of it all he was exhausted and fell asleep on my shoulder.  For the most part, however, he was a trooper!

The good news is that we won't have any therapies for the next 6 months to a year.  The not-so-good-news is that he still has a slight hole in his palate.  That makes it more challenging for him to eat table food, as it gets pushed up into the hole and out his nose, which makes him pretty irritable. In addition, it might be prohibiting him from forming "B" and "P" sounds, as he can't get a proper seal in his mouth, which is necessary for those sounds.

We were given some good suggestions for feeding, and things to work on to support him in the language portion, and we'll get there.  We already had his next surgery scheduled in June, to reshape his nose.  They'll close the hole then.  There's a slight possibility that it will mean we'll have to stay overnight, instead of outpatient, but we will deal with what comes!

Over-all, I think we both felt better about his progress walking out of those meetings.  It's difficult at times to know if you're doing the right thing when your child has something special about him...though an argument could be made that it's true even when your child is "normal".

I wish I could go back to the day I learned of his imperfection and tell myself it would be okay.  I wish I could tell myself that it would be because of that imperfection - not despite it - that he would be the most beautiful creature I would ever meet.  There will be tough days ahead, but I have no doubt that my little man will come out the other side stronger and better because of it; and I  know he'll teach me a thing or two about living a graceful life along the way.

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