Can of worms!

It seems that our medical lull may be over, partly of our own making, but because so many things are inter-related.

Before we can really move forward with smile surgery, we need to address this possible sleep apnea issue, which starts with a Sleep Study.  It's been a few years, but it will not be fun going back in and getting all the probes stuck all over Emma and trying to sleep in a hospital room for the night.

Worst case scenario, she has obstructive sleep apnea.  Then comes diagnosing the problem, which may be her "enlarged" tonsils, requiring removal (read surgery!).  After a recent high profile case of a girl going into a coma after this routine procedure that causes some anxiety.  But you roll the dice with any surgery really!

Then we would be free to move forward for smile surgery.  Now, the community consensus seems to be that it is a huge risk to have it done here because our surgeon has not done the Labbe technique before (see yesterdays post) or the other method on someone with Moebius.

So, I contacted the surgeon in Long Island, NY who did the Labbe procedure on the lady in the video in 1985 and we will have a phone consult, then maybe go for a visit.

On the flip side, I had the pioneer of the original "smile surgery" (who is based in Toronto and will not do a phone consult) recommend someone local - and he gave me the name of two guys in New York also!  However, this doctor does come to the conference in July, so we could meet with him there - though we were thinking of getting the surgery done in the summer!  That is only 6 months away and so my mind is racing on how to fit all this stuff in!

We are not really considering finances at this point, assuming that insurance will cover the procedure and a "local" hospital will dramatically reduce other costs.  We can always have a fundraiser if need be!

Emma seems blissfully unaware of the mental strain this puts me under - and I am glad about that.  I don't want her to ever feel like she is a burden or inconvenience.  We'll try and work out all the details for her.  

One thing is clear, that she wants it.  When she saw the video she said she wanted a smile like that.  She told my parents that she really doesn't like her smile because it looks like a frown.  this is great - I know many other kids don't talk to their parents about it and I think probably feel worse than we realize.

Just today, one of the young women with Moebius who is working hard to promote Moebius Awareness Day on Friday wrote this in a Facebook post: "I heard this guy go "there's that weird girl" while looking at me."  I don't think she has had the surgery because people who have seem to use photos of them smiling.

While I remember being teased at school and feeling very insecure and vulnerable, it was passing.  This is a lifelong thing.

Please keep praying that we make the right decisions, for God's will.  We will take it one step at a time.