And he runs!

Today is day 18 on Ben's medicine. Two people (a friend and a neighbor) have told me that they see a difference in Ben and his ability to RUN. I did not provoke these conversations--they came to me and said, wow, I have never seen him run like that! Music to my ears :o) I am so glad we decided to go this route. The only side effects that I have seen so far is in the late afternoon/early evening, he gets a little hyper. It is funny in a way because he is usually so laid back. I know we are still at the beginning of all this and that more side effects could come, but for now-it is good.

This past Monday, he turned 6! We are having a very special birthday party for him tomorrow, provided people can get here with the 5-8 inches of snow we are expecting today lol.

Next Wednesday, February 10, we have our very first clinic appointment. I am excited and a little nervous about it. I "met" someone last night on Misty VanderWeele's live tv. Turns out my new friend lives close by-within about an hour and a half or so. We chatted a lot about Duchenne and what I can expect at our first clinic appointment. One of the doctors that Ben will see will be a cardiologist, to do an echocardiogram on his heart. I guess I have this fear that they will see something that isn't good. By God's grace, I will deal with whatever comes.

Misty has a questionaire that I filled out a few weeks ago. One of the questions I continue to ponder. I don't remember the exact wording, but something to the effect of: "What is more important regarding your son's life? The quantity or quality." At face value, this can be a tricky question! I want both! However, I want what is best for my son, so after a few minutes of deep thought, I chose quality.

Something else I have discovered in recent weeks- Muscular Dystrophy is a very broad term for many neuro-muscular disorders. I, myself had never known of there being more than 40 different dysrophies, which each having it's own set of problems. Duchenne is the specific form of dystrophy that my son has. Duchenne is 100% fatal, it is genetic, and it is the most common! 1 in 3,500 boys have it! I was blown away when I heard that!

I guess part of my goal with this blog, aside from keeping family and friends updated about my son, is to raise awareness of DUCHENNE muscular dystrophy. People need to know. I didn't know until I was hit in the face with it. I have been meeting so many great people through this, mothers of sons with DMD, doctors, people with a passion for raising awareness, etc. I want to do my part too.