Thursday, March 6, 2014


We went to the hospital on Monday late morning to get a CK blood test. This blood test measures the Creatine Kinase level.  Creatine Kinase is an enzyme that is released by the muscles after they are broken down.  Everyone has CK in their blood because everyone has normal muscle breakdown each day BUT normal people can rebuild their muscles.  So after much screaming that could be heard by my older children in the waiting room, Deacon's blood was taken and off it went to the lab.

The call came on Monday afternoon.  What seemed to be so many hours later ended up being around 4.  Our pediatrician said that Deacon's CK levels were at 38,000.  Normal level is 75-230.  She would refer us to a Neurologist immediately so that we could see what the next steps were.

We knew then that for sure something was wrong with Dea.  We knew that it was probably Duchenne Muscular Dystrophy.  Duchenne Muscular Dystrophy only affects boys. Most boys are diagnosed around ages 3-6.  Most boys are in a wheelchair sometime around ages 9-12. Most boys won't live past their late teens/early 20s.  Talk about a punch in the gut.

But Deacon had gotten so much stronger in the year plus he has been home.  He is doing things now that he could physically when we first got him.  He can ride his bike. He is so active.

So the next step is the neurologist.

1 comment:

Courtney Cassada said...

goodness, i'm trying to be patient in hearing about Deacon!! and am praying for you all...and so very thankful that he is HOME and with YOU as he goes through this!