Friday, February 28, 2014

the day

Every Friday, Deacon goes to physical therapy.   He has been seeing this therapist for over a year now. It was February 14, Valentine's Day.  I took Deacon to his weekly visit then ran to pick up Kaylee.   Then, I went inside to pick him up and chat with the PT.

On this day, he had some questions for me.  He asked me what tests we had run on Deacon when we first got home. I told him, just the standard blood tests.  He then said those words that would forever change our lives.  "I think we need to have Deacon test for Muscular Dystrophy."  I said "ok" not knowing what I was just agreeing too.  I rushed home and emailed our pediatrician.  

My email to her was this, How do you test for Muscular Dystrophy? Is that something that you can do or would we need to see a specialist?  I saw her later that evening and she said it was a blood test.  We could go to the hospital on Monday.

The next morning, the phone rang. Our pediatrician was worried and wanted to see if we could get in for the blood test on that day, Saturday.  Of course, in our small town, that wasn't doable.  We would have to wait until Monday to get the test run.  She did share some things that we should research.  

Ryan and I spent Saturday googling and slowly but surely a knot formed in our stomachs.  Deacon did have several (most) of the symptoms for a particular Muscular Dystrophy.  

Deacon enjoying a peanut butter frosting beater.

Thursday, February 27, 2014

it's been a while

My last post was dated March of 2013.  So it's time to dust off the cobwebs and fire up the blog again. This is a place that I can come and get my thoughts out.  I am not a great verbal communicator but I sure can type up some feelings in a heartbeat.

We have had a great year as of family of 6.  Deacon is such a joy and  genuinely brings such a happiness to our family.  We have been busy with sports and music and dance. We have enjoyed trips and home projects and just having family time.

February 14, 2014 is the day that we will always remember our lives changed.  It was a simple question by Deacon's physical therapist that started this new journey that we are on.  In the last 2 weeks we have  experienced something we never thought we would have to go through as parents.  However, God is with us and will guide us as we do our best to take care of this wonderful boy.