Updates

I didn't realize how long it had been since I last posted until my mother-in-law said something about it the other day.  Life has just been so busy! 

Recently, Ben has been having problems with taking his medicine.  Deflazacort tastes HORRIBLE and he accidentally tasted it last week.  He has been refusing to take it since then.  Abruptly stopping this medicine can cause problems with a person's adrenal system.  Thankfully, I was able to speak with his doctor who gave me some different ideas on how to get him to swallow his pills.  Prayerfully, he will begin taking them regularly again!

Ben had an appointment today with his Orthotist.  He has outgrown his night splints and needed to be casted for new ones.  The appointment went smoothly and we should be able to pick them up in a few weeks. 

We had a blessing in the waiting room  before we were called back.  An older gentleman was sitting down waiting for his friend to be done with his appointment.  He struck up a conversation with me about houses, as there was a show on HGTV in the waiting area.  He is a retired realtor and talked about houses he has sold and people he has helped.  I told him we were thinking about either remodeling our home to make it wheelchair accessible or moving to a larger home to do the same.  He asked who the wheelchair was for and I pointed to Ben.  He looked surprised and asked me what was wrong.  I explained that he had Muscular Dystrophy.  He asked me to write a number down.  I thought maybe he was giving me a number of a place to help with remodeling or something.  It was actually HIS phone number and address.  He told me to have my husband call him because he wanted to give us a power wheelchair that he no longer uses.  He said we need to get a battery but that's it.  A great blessing!  Ben has seating clinic in September to be fitted for a power chair but he will not get it for a while.  This chair that the man told me about would be a great in-between.

My husband and I were able to attend a Duchenne conference at Nationwide Children's Hospital in April.  It was very informative!  And overwhelming.  And inspiring.  We met a lot of families and it was very encouraging to meet some of the older boys who are now going to college and basically 'getting on with life'.  I am very thankful for this conference and am looking forward to the next one.

We have been doing a lot of swimming this summer, which is not just fun, but therapeutic for Ben too.  I have been noticing him start to waddle occasionally.  That concerns me.  I mean, I know it is coming that he will lose his ability to walk, but I guess I didn't think about it being any time soon.

I still say, God is good....all the time.