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Showing posts from September, 2018

Holding My Breath

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This post has nothing to do with waiting on a hurricane.  The East Coast is certainly holding its breath right now and I pray that it won't come our way.  But for me, since the beginning of August, I have been holding my emotional breath, waiting to hear the results of my son's genetic testing.  I was told at that visit that he probably did not have mitochondrial disease because he was doing so well compared to what he should be doing; simply put, his previous degenerative diagnosis was wrong.  And genetic testing has progressed exponentially in the past 10 years, so an update was due. After three months, no answer.  After four months, I decided to call.  No news is good news is not the case when waiting on results like these.  As it turns out the report had just come across the doctor's desk which I had mistakenly called directly and so got to hear the results firsthand. My 21 year old son with development delay, significant speech deficit, digital arthrogryposis (con