Cleft Palate repair

We met with the Shriners today.  It was overwhelming in a way.  We met her case manager, the ENT, the surgeon, a speech pathologist, a geneticist, their residents (just like "Grey's Anatomy"), and communication specialist that helps prepare the child for surgery.  


Sofie was prodded and poked (no shots).  She opened her mouth wide for the many flashlights stuck into it.  She sang, she spoke, she danced, she laughed, she played, and she cried only a little.  I was very proud at how well behaved she was considering we were there for about 4 hours.  She is a great little girl.


The good news is that the speech pathologist thought she was making good progress with her sounds and explained why her "b's, d's, f's, k's, g's, p's, t's, etc." weren't coming out.  She also helped prioritize Sofie's surgery to ASAP so that she doesn't start any other bad habits.  Last, she will work with the Early Childhood Intervention team on the speech therapy strategy.  Very cool.   


The bad news is that her cleft palate is way worse than I thought it was.  I saw only the small hole in her mouth, and I thought she wouldn't require that much work.  It turns out that the muscles in the back of her mouth are formed incorrectly, and although the hole is small in her mouth, since the muscles are formed the way they are, it is like the entire roof of her mouth is missing.  The surgery plan is to reconfigure all the muscles in her mouth to be structured properly.  Then, if everything goes well, the next surgery will be when she is 8-9 and that will fill in the hole in her mouth.  Then, when she is 16, we will look at fixing the cosmetic stuff on her face (droopy nose).  Apparently, if they go in and try to fix the nose now, it will likely screw up the development of her nose on her face in the future.  So we have to wait.


I am heart broken that she might have to be subjected to the taunts and teasing about how her face looks. I was teased a lot when I was in elementary school & junior high about a mole above my lip.  As I have gotten older, it faded, but at the time, it definitely affected my self esteem.  It was hard.  She is a beautiful little girl, and I don't want her to be broken by this experience.  Children can be cruel.


Anyway, I am feeling confident about the medical team.  I am extremely grateful that the Shriners accepted our case.  I am hoping we will have completed the surgery by mid March.  Since we are local, the Shriners are going to call us if there is a last minute cancellation due to illness so we could get it done in February.  


After the surgery, Sofie's arms will be splinted for at least 2 weeks so she can't put her hands in her mouth.  I am not looking forward to that.  It will be an extremely frustrating time for awhile for sure.


That's our news for the day.  We meeting with the Early Childhood Intervention team next week to start speech therapy.  Hopefully that will go well too.