SMILES
(WHAT IS SMILE SURGERY ?)

Chapter 6 - Parent's Guide

The way we managed to find out about Mobius was from my son actually.  He asked me if there were such things as 'smile doctors' so I said I didn't know and did a google search.  WOW!  After 7 years of asking doctors, neurolgoists, pediatricians, etc., not one ever said the words 'Mobius Syndrome', which now seems unbelieveable to me.

My son is interested in finding out more about the facial nerve graft surgery and I have promised him that we would explore what that was and find out all we know.  I have been corresponding with Professor Earl Owen in Australia, and he has been amazingly helpful and seems to be a kind and gentle person in every way.  We are not sure if that is the route we will take, but having the information will give us peace of mind, knowing we have looked at all the possibilities for him.  Ultimately it will be Kieran's decision.  It is probably a blessing in disguise not having had the surgery presented as an infant, it is so difficult to imagine what choices to make for someone else, now he can make it for himself. I truly loved reading the previous posts in the archive, especially from the young adults with Mobius.  You are a tenacious and spirited bunch, I hope that Kieran has the same qualities (which he seems to have the beginnings of!) as he reaches adulthood.  You all have inspired me in ways you can't imagine :)

With our newfound information, we have scheduled a series of Dr. appts for after the 1st of the year in order to get a diagnosis.  We feel as if a light has been turned on!  I have waited the better part of the week to post this, I was far too emotional when I began finding information and finally feeling like we weren't the only ones in the world dealing with this!

Gena

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