Appointments Update

Thursday we had the pleasure to visit with two different specialist.  The first was with the audiologists.  It was just a follow-up to look into the ears to make sure the tubes were in good standing.  They were and away we went.  Our next specialist was our genetic doctor.  This is a required appointment annually.  We spoke with the doctor and his first question was if the letter we received was accurate.  This letter was dated from last November.  The first item I noticed was that Eva is diagnosed with C17q21.31 microdeletion syndrome.  I told him that the name has changed and it seemed that his reaction was shocked.  He didn't seem to be interested in the new name or wanting to hear about the changes and new findings.  I stated that I was going to email him the recently updated Unique pamphlet.  I will be certain to get that to him tonight. 

Caged marble design

I need to realize and rationalize something.  As pointless as these appointments seem to be, our child must continue to see them because of our healthcare system. And because we want to have these appointments in a timely matter and we get annoyed to resubmit all of our personal information, we continue to go when asked.  And of course because as a parent, we want answers to questions only these doctors should know the answers to.    We want our local doctors to have the power, time, and patience to learn about our children.  Our intentions expect that.  Unfortunately, our experience is otherwise.  Our system is just broken.  As a parent, I have expectations from our "specialists".  As a specialists, I expect you to be able to have that magic glass ball and to predict, from his experience, what our children's future may become.  But, as reality hits, I know that science is far more advanced than our healthcare system.  Doctors now do not seem to have the time to research new material if it was not required to attend or read. 
I will continue to educated my specialists.  I will continue to fight for your right to get services.  And,  I will always let the medical professionals know how much you are changing along with your personal accomplishments and triumphs.