4 days

Ben will be taking his 4th dose of his Deflazacort today. So far, so good. We did see what appeared to be a rash on his face on the evening of his 2nd dose. But it went away within about 15 minutes or so and I have seen nothing like it since. I haven't noticed any changes really. (yet) I have been pumping him full of calcium, to try and strengthen his bones while taking the Deflazacort.

I watched a movie called Darius Goes West. When we first heard about the possibility of Ben having MD, I got on the library website and reserved everything that had to do with muscular dystrophy. I find that the more I know, medically speaking, the better I feel about things. I like having a complete understanding so I know what to ask the doctors. But the books that came in that were more biographical in nature, and this movie, I had to put those on hold for a little while. I am okay (for the most part) with the medical knowledge, but am having a hard time reading/seeing someone else's life who is dealing with this same thing. It just hits too close to home. I returned the movie (unwatched) and then kept hearing about it on all the MD websites that I have been getting on. I re-reserved it and actually watched it Monday.

This movie is a documentary about a young man, Darius Weems. He is 15 years old at the time of the filming. From the website:

Accompanied by his eleven best friends, Darius Weems, a fifteen-year-old living with Duchenne Muscular Dystrophy (DMD), leaves home for the first time in his life. The rowdy crew sets a course for California where they hope to convince MTV to customize Darius's wheelchair on the hit show, Pimp My Ride. Darius Goes West been enjoyed by hundreds of thousands of people of all ages all around the world.

Just a note-I do not watch MTV and didn't even know about this particular show. According to the movie, they surveyed people and asked them if they knew who Jerry Lewis was. Most people said NO. People my generation and younger don't know who he is, yet he is the "face" of Muscular Dystrophy, having done the telethon for many years. The goal of going to this MTV show was to tell a new generation about DMD. Before Ben was diagnosed, we knew nothing ourselves, so I do believe that people need to know about this disease. It affects 1 in 3,500 boys and is 100% fatal.

There was another family chronicaled throughout the film. A 5 year old boy (like Ben). I was shocked once again to see another little boy who walks, runs, kicks a ball, etc...just like Ben. Just another reminder that yes, he really does have DMD, it isn't just him being the Baby of the family, it isn't just him walking silly to make us laugh.

Again, taking this one day at a time, and enjoying our time as much as possible.