Neuromuscular Clinic

This morning we headed to Wash U. for Andrew's check-up with his Neurologist.  Andrew was a champ of course and worked hard through all of the testing and timed activities.  Andrew's scores relatively stayed the same overall, but individual muscles fluctuated since last June.  Andrew's Neurologist was happy with the results, but suggested we start steroids to help Andrew's energy levels and to hopefully slow down the progression of Duchenne.

Prednisone was prescribed along with a regiment of other vitamins and supplements.  Before starting anything though, we need to teach Andrew how to swallow pills.  Prednisone is a very bitter drug that leaves a horrible taste in your mouth the minute it hits your tongue.  There is an oral option, but you have to take so much of it that it's just easiest to bite the bullet and get Andrew used to taking pills.  So here we go - this is going to be a fun challenge :)

We also had to get Andrew's calcium levels checked before starting steroids.  So after all of the hard work at the MD clinic, we were then sent to Children's for a blood draw.  It's ironic being at Children's with Andrew since we spent so much time there with Nathan as an infant.  We forget that Andrew has only been there once or twice, but are quickly reminded as he's pointing everything out to us that makes this hospital so special for children.  Steve and I didn't take any of that in with Nathan's experience as his stays were merely a life or death situation.  I have told many people that you don't ever really WANT to go to Children's Hospital, but if you HAVE to go, this is the place to be.

One last appointment to add to our list is for Andrew be evaluated by a Cardiologist.  An initial cardiology evaluation is important to keep track of Andrew's heart with Duchenne.  Your heart is a muscle and one muscle that is so so very important!! 

It was quite a long morning, but Andrew did fantastic and we have yet a new regiment to add to our schedule.  One blessed day at a time...