May 15, 2011

Mini vacay and Zoe cranio visit

Dan had his corporate yearly training meeting about an hour away from us.  He already had the hotel room on a nice facility so we decided to make it a mini-vacation for us.  The boys (Jacob, Sam and Luke) love to go to my Mom's house and play with my nephew. Zoe had to go with me to go to her appointment.  Manny of course was going with me.  So Kaley went too ... to help with Manny and also to not be the only girl in the all boy house. 

We had fun in between the appointments.  We went swimming.  We went on a paddle boat.  We hung out.  Just the girls and the baby.  (3 kids seems like such a breeze!) 

Zoe's craniofacial appointment went much better than expected!  First of all, her hearing was *mostly* in *almost* normal hearing range.  That's great!  She is in need of a lot of dental work (we knew that from looking at her teeth ourselves) and we have a plan in place to do it now. 

Last year, they did a VPI study and it showed that the lateral walls of her throat were moving, the pharyngeal wall was not.    (For those who don't know what I'm talking about ... a VPI is a study of the closure of the palate to produce certain sounds.  The pharyngeal wall is the back of the throat, lateral walls are the side ones.)  They scheduled a surgery to do a pharyngeal flap to help her produce those sounds.    Surgery stopped.

This visit, I thought for sure they would immediately recommend her to do the surgery ASAP.  But they said she sounded better.  She does a lot of therapy (in school and with us).  She is highly motivated and not frustrated so she works hard.  She also does a lot of errors in her speaking (especially some odd tongue movements).  So they couldn't tell what was going on.  The surgeon didn't even feel comfortable doing the surgery without doing the test again.  So ... if she fails it, we will do the surgery.  If she doesn't, it's off.  (So now you know the specific prayer we're asking.) 

Secondly, we know that about age 6, this team does the bone graft.  Zoe is 1 1/2 weeks from being 6.  So I thought they'd want to do that immediately.  But they said she was a bit on the small side and would love to wait until she is a tiny bit bigger if they can ... to give her more time to grow, especially her hip (that's the bone they use for the graft). 

The surgeon and the Orthodontist were talking about the plan.  When they want to do the bone graft, her mouth is like a triangle, very tiny in the front and wider in the back.  They will have to do an expander first.  The surgeon and I were talking and saying that she is already starting to lose teeth so she might NOT have the time to wait.  They looked at her last panaromic view of her teeth and realized there was a fairly mature tooth root ... and that was almost 2 years ago.  (They are trying to do the bone graft JUST before the teeth would naturally erupt ... they provide an "anchor" for the face.) 

So the plan is this ... get a new panoramic view of her teeth this week.  IF the teeth are not due to erupt soon, we can wait.  But if they are any where close, we will need to start the prep work for the bone graft. 

In summary, we are facing 0,1 or 2 surgeries in the near future based on the results of these 2 tests.  We know we will eventually need the bone graft no matter what.  But the P-Flap is something we're hoping to avoid. 

The next few weeks will be full of visits for Zoe.

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