I Know Who Holds Tomorrow

Last week, we went to a friends house for a family game of baseball. We didn't really go by the rules. We let everyone bat until they hit a ball, didn't call fouls-if they hit it, they ran, went through the batting line up once and switched sides. With the mix of ages between our 6 children and their 4, it was the best way to go for a fun, friendly game.

Whenever it was Ben's turn to bat, whoever was pitching made sure to get close so he could hit the ball. As he ran the bases, you could just see the sheer determination in his face as he pushed his legs to go faster and faster. Part of me wanted to tell him to slow down some or take a little break. The other part of me said, just let him enjoy himself, he is having so much fun. I decided to just let it go.

I have noticed in the days following, that he has been a little more tired and having pains in his feet. He fell at the grocery store yesterday. I always question myself, wondering if I made the right choice; even the little ones. Should I have stopped him?

Imagine how he and other DMD boys feel. His mind is so concentrated on making his body do something that it struggles so hard to do. Imagine feeling like you can go faster, stronger, higher, only to have your legs produce a fast walk instead of the sprint your mind is determined to make. Imagine running with 50lb weights inside your shoes. Imagine a gallon of milk being too heavy to carry.

Living for the moment is my motto. I didn't used to be like this and I sometimes feel pulled into different directions. As a Christian, I believe that nothing happens by accident. I want to live in the moment, yet I want to see the bigger picture of it all. I know that our lives are only just a vapour. If you think about it, in light of eternity, we are only on this earth for a speck of time. Eternity is what truly counts. James 4:14 Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.

I want my son to enjoy life. I also don't want anything holding him back from what the Lord has for him. I want our time, mine and my whole family, count for something. Only the Lord knows all the intricate details for our future. I am continuing to place my trust in Him and have faith that He holds tomorrow in His hands.

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.

Duchenne Therapy Network

Here is a link with info from a physical therapist regarding DMD.

Make a Muscle-Make a Difference

Our family will be participating in the MDA Muscle Walk on March 26, 2011. We have also become MDA volunteers for the Shamrocks for Dystrophy program. We feel that since we have benefited from the MDA, it is a little something that we can do to give back.

• Muscle Walk- We are raising money and awareness for MDA. The actual walk will be March 26. Me, my husband, our 6 children, and our parents will be participating together. You can see our muscle walk page here.
• Shamrocks for Dystrophy- Have you noticed any stores or restaurants with the little green shamrocks hanging up? This is another fundraiser that helps raise money for clinic visits, the summer camp, and research. The way our family volunteers is that we go to specific stores that participate and simply thank them. We were given fun incentives that we can pass out to the cashiers and other workers. It is nice for these companies to put a face to what they are doing.

I like feeling like we are doing something to help or contribute in some way. There are so many wonderful organizations out there that benefit Muscular Dystrophy in some way, and we are thankful for all of them.

New Clinical Trial

A representative of Kennedy Krieger Institute has recently informed me of a new clinical trial for boys with Duchenne Muscular Dystrophy. They are checking to see if the drug Revatio (same drug that is in Viagra) would be beneficial as a cardiac drug for DMD patients. They are still recruiting for this trial. They plan to have 30 boys, ages 15 or older, who have been diagnosed with DMD. For more information, or to see if your son qualifies, click here.

I have recently read about the potential benefit of this drug in boys with DMD in a Quest article. I am so thankful for so many researchers trying to help these boys!


About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school‐based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.