Results

The boys' specialist called me with the muscle biopsy results.  We don't have conclusive answers as to which myopathy the family has.  We know that it's not any dystrophy.  We know that it's not nemaline myopathy.  Beyond that, we have more testing to do.  Muscle changes were present to conclude a myopathy, but not distinct enough to know which one from the biopsy alone.  We may know later.

I'm much happier with the doctor after these last few months.  We had a rough first meeting.  It happens.  I've had time to do my own research, which I usually avoid.  The first rule of being a special needs parent: Don't Google It.  The second rule?  Never Read A Blog.  I feel free to laugh at my second rule now.  This blog is absolutely not informational for any specific condition.  It's about having a place for my own emotions and thoughts, so that I don't bring them into an office visit.  I break my own rules, and it's ok.  I have information that I'd rather have straight from the doctor's mouth.  That's ok, too.  We get what we need.  We do the best we can.

We will do blood tests to further the search for which specific disease this is.  We'll know one day, and we'll go forward.  We're on an amazing journey.  It's not going to be all spelled out and smooth sailing.  As a consequence, we won't be phased by other challenges in life.  That which dismays another family won't even make us blink.  We have our own song to sing.