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!
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!