We saw a win by the Browns...it was only a preseason game…it did not make a difference to RJ…the adventure was awesome!

 It is amazing to us how much RJ loves football.  He talks about football, he watches football, he understands the game and proclaims that it is his favorite sport, and he even likes listening to talk radio about football.  Yet, he has never played a game.  His sister throws him passes day after day inside the house until she can’t stand it anymore.  He wants to be tackled and to constantly punt the football (again in the house!)  He can hardly kept up with his friends at recess and has on numerous occasions proclaimed himself the referee since he realizes he can’t catch most passes or throw very far.  Nothing will keep him from loving football.  Sometimes we stop and wonder; why does he love a game that he can’t play well at all?  We would give anything for him to be able to play football with his friends.  He is not strong enough, fast enough and would easily get hurt due to his weak bones.  We wish he were on a team to feel the excitement of the game, spend more time with his friends and be good at a game he loves.  But the reality is that it just won’t ever happen.

We realize that it doesn’t matter to RJ.  He is happy, he has excitement playing with his sister and friends, and he is good at football (as good as he can be).  RJ never asks for anything more.  Well, maybe a trip to an OSU game next year!

It is hard to explain to others why RJ is doing very well physically.  His team of doctors at Cincinnati Childrens Hospital thinks that perhaps he is producing enough dystrophin (muscle protein) to keep him stable for now.  Duchenne is very complicated and affects each boy somewhat differently.  His doctors don’t know for how long he will continue to be strong because so far he has not showed signs of any major physical decline. This is not typical at all.

It is fair to say that he has peaked in terms of strength.  On average, boys on daily steroids can typically maintain muscle mass for 2-3 years longer than boys without steroids.  RJ has been on daily steroids for over two years.  Apparently, he is responding to the steroid treatments positively in terms of strength.  We learn to deal with the other side effects and try to explain them to Shannon, his friends and family.  Doctors are hopeful that he could beat the “average” and walk longer because of his current strength but timetables are just a guess right now.  We continue to live in the present and all that he can do right now while we prepare for the future.  We know that everyone’s prayers are helping him stay strong for as long as he can and hopefully until a treatment is found.

May you be blessed with God’s gifts of peace, joy, and love at Christmas and always.  We appreciate and thank everyone who has continued to support us on our journey.  

Merry Christmas!

RJ laughs every time he sees himself in the video and still wonders why all the footage of him playing his favorite activity, Lego’s hit the floor of the editing room (along with the puzzled look we got trying to explain an editing room). Shannon on the other hand, wonders why she wasn’t shown more in the video (i.e. the great shot she made playing basketball in the driveway). Well, I guess we shoudn't have worried about them being camera shy.

For those who are curious, Cleveland raised just over $900,000 throughout the year and during the telethon that was included in the national total for MDA. Maybe next year MDA of Cleveland can reach one million dollars – it just sounds like an awesome amount for all the kids! To put it into perspective $900,000 is currently 234 hours of research dollars.

 

In June, RJ attended a week-long overnight camp sponsored by our local MDA office. While he was not overly excited (it was his first year), we knew he would have nonstop fun at camp and begin to develop valuable friendships with other kids living with neuromuscular diseases.

 

After his week at camp, RJ happily proclaimed, “I only want to go back again next year if I can have the same counselor, the same friends in my cabin, and the same food!” Special thanks to Angela (RJ’s counselor) and MDA for an amazing experience. RJ’s favorite things at camp were playing 21 at casino night, steak night, canoeing, fishing, and swimming each day (we can’t wait to tell RJ’s swim teacher he named swimming as a favorite).

 

RJ takes everything in stride and only recently said, “Mom, I liked it better before my leg problems.” He realizes he can’t compete with his friends and usually just opts out of anything physical or anything that is a physical competition. We hate to say it out loud, but thank goodness for Wii, DS games, and Star Wars movies!

 

We are truly amazed by RJ’s wonderful group of friends and their acceptance of RJ for what he can do. As adults, we can all learn valuable lessons from the unconditional love that kids have for one another.

 

Simply stated, MD is due to a change or mutation in the MD gene (this gene causes muscle cells to make a protein called dystrophin which keeps muscle cells working properly). When a mutation occurs, the cells make less or no dystrophin, which results in muscle breakdown and weakness. After DNA diagnostic testing confirmed that RJ has a mutation in the MD gene (specifically a deletion of exons 22-29) we began to meet with a team of doctors that will care for RJ during his journey with DMD.

• A Pediatric Neurologist explained the pros and cons of daily corticosteroid treatment. While this medication is not a cure it is recognized as a standard of care and management for boys with DMD.
  

• A Pediatric Cardiologist ran a series of tests including an echocardiogram, an EKG, and a physical exam and determined that RJ’s heart is currently functioning well and showing no signs of cardiac involvement. The doctor drew a smiley face on a picture of RJ’s heart and told him that he had a happy heart! RJ will proudly show anyone his heart picture!

• A Pulmonologist administered a lung function test and was happy with the results. We learned how important it is to keep RJ from getting a simple cold or the flu because of his potential for a weakened respiratory system.

• A Dietician reviewed the importance of a low calorie, low sodium diet to help offset the weight gain and fluid retention that occurs with corticosteroids. She also recommended daily calcium and vitamin D supplements to counteract the effect of the corticosteroids on RJ’s bones.

• An Ophthalmologist performed a series of tests on RJ’s eyes to capture a baseline since a possible side effect can be cataracts.

• Genetic counseling was necessary to understand the implications of RJ’s disease on other family members. RJ’s genetic disorder was caused by a random spontaneous mutation and was not inherited.

• A tuberculosis test was also administered to make sure RJ is not currently fighting any infections.

• A bone density scan was performed on RJ’s body since osteoporosis can be a side effect.

• A Physical Therapist performed a thorough evaluation on RJ to determine his range of motion and muscle strength. RJ’s favorite appointments are the sessions with his physical therapist. In RJ’s eyes it is a one on one gym class (with an occasional frown at exercises that really stretch his very tight legs). Besides that, it is an hour of laughing, guy talk, and Star Wars dialogue.