New book!

What is Duchenne? Why haven't I heard of it before? This is a new book collaborative to educate the world about Duchenne Muscular Dystrophy. 33 parents have come together to share their stories....I am one of them.

MDA Muscle Walk

We participated in the MDA Muscle Walk this year and raised almost $600! THANK YOU to those who donated, not to just our team, but to MDA! Here are a few photos...

Positive news :)

We had clinic last Wednesday at Nationwide Children's Hospital here in Columbus. We were supposed to see the cardiologist but he was having his own surgery so we saw a nurse practitioner instead. Because of his regular cardiologist not being there, we had a long wait and actually wound up being several hours late for his clinic appointment.

Ben had an EKG and an echocardiogram. DMD boys typically have these tests done yearly unless complications begin. Both of these tests showed that his heart looks exactly the same as last year, praise the Lord! We were told that his ejection fraction is 65%. I had no idea what this meant so I asked what normal is. She told me that anything above 50-55% IS GOOD. His is 65%. Good news :)

His cardio appointment was at 9:30 and clinic was at 10:30. Because of our wait, we didn't make it upstairs for clinic until 12:15. We saw Dr. Flanigan, his neurologist, that we see for every clinic appointment. After the muscle strength tests, he stated that Ben appears to actually be a little stronger than last time. This is NOT the norm. He did state that at the ages of 6-7 (the honeymoon years), the muscles are continuing to grow (and then weaken). He attributed his strength to this period of growth. He stated again that he felt that Ben was on the 'higher end of the spectrum' concerning the Duchenne.

After we saw Dr. Flanigan, a physical therapist came and got Ben to do a few tests with him. He is in a clinical study where they measure his strength, they see how long it takes him to get off the floor, and a timed running test. I was not allowed to go with his to this portion of the visit. He is actually in several clinical studies. I feel that it is a benefit for him and others like him, now and future, to further study the complications of this disease.

A few weeks ago, the seating clinic called me to schedule an appointment. Seating clinic is where you take your child and have them fitted for a wheelchair. I wasn't real surprised, as Ben's physical therapist told me that they would be calling. She had actually made the recommendation. When I shared this with Dr. Flanigan, he said nope, he doesn't need that yet, it is way too soon! Of course, I knew that it was too soon for a wheelchair-he still walks fine. He does get tired on longer outings though. Anyway, I have decided to cancel this appointment for the time being.

All in all, it was a very positive visit. We will go back in 6 months. God is good :)

Passing the time while waiting for cardiology.