Sunday, March 9, 2014

She was great

We visited the neurologist just 6 days after hearing the words "I think we need to have Deacon tested for Muscular Dystrophy."  It feels like those days took forever but 6 days really isn't that long.  We headed to OKC and nervously waited to go back to the doctor's office.

It didn't take long before we were visiting with her.  She was kind and knowledgeable. She asked us about Deacon's story and I told all that I could.  She asked us why we were there, we shared what the physical therapist had said.  She asked us what we had noticed since we had been home, we told her.  She had Deacon do a few things like get up off the floor, walk, run, squeeze her fingers, all pretty basic.

Then she said that she agreed with us.  She does think that Deacon has Muscular Dystrophy and she thinks he has Duchenne (about 70%).  She did say that she was surprised with how strong he was.  She said that with his CK levels being so high, she did not expect him to be so mobile.  That leaves 30% that she is not sure what kind of Muscular Dystrophy he has.

So we did a blood test. This test will scan his DNA and see what exactly his genes look like and what exactly is wrong.  This test will take 2-3 weeks to get back.  As of today, it has been 2 weeks and 3 days.  Hopefully, we will hear in the next few days what is wrong with our sweet boy.


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