The Appeal

Today was the day.  We had been working toward this day, praying about the outcome.  To be able to give our daughter the smile she longed for, the way we felt best, by the best doctor.  We asked the Lord for wisdom in making the decision as well.

Our initial application, following our consultation in New York was denied.  We submitted a grievance over the decision and sent a detailed letter about why.  The appeal hearing was scheduled for today at 1:30pm.  I was planning to attend and maybe bring Emma for the human face of their decision.

And then we went to the Moebius Syndrome Conference.

We never expected to hear anything new.  We assumed that we would have been offered any other treatments that are available for Moebius Syndrome.  We ASSUMED that the doctors we still see (which is not many) actually know about what's available.

When did I forget how rare Moebius Syndrome is, and that there is no-one advocating for Emma but us.  And if not us, no-one.  So, how did I get so complacent that we were done, nothing more was available or even possible?  Maybe I was just happy to get to a place where things are fairly "normal", that I was too tired to push for more, for the best.

Well, no point in lamenting my short-sightedness.  What we learned is that there is more available for Emma, that surgery is not the only option, may not be the best. While therapy will take longer, and may not be as dramatic, the effects could have a greater impact on Emma's quality of life and communication.  And surgery is still an option down the road.

Around 2:15pm this afternoon I got an email from the surgeons office.  The surgery was approved.  But the decision was delayed just long enough for us to get a glimpse of a world of opportunities we did not know was there.    And we have decided that we no longer want to get the surgery for Emma, at this time.  I guess I'd better let the surgeon know!

I have told Emma about our decision.  She was certainly disappointed.  I tried not to get her hopes up about what therapy will do, especially since we don't know yet if we are going to be in the trial, but I have been told that there is more than one option to help.  But until we find out about the trial, and during the trial if approved, we can not do anything!  It would impact the results, and so we wait. Again.