We certainly have reason to celebrate with five years having gone by since RJ was diagnosed with Duchenne and the fact that RJ is still doing fairly well. A recent appointment at Cincinnati Children’s Hospital in January was positive overall. The doctors are happy with RJ’s strength, but do believe he has peaked and is showing some signs of decline. They increased his steroid dosage to try and get the most out of his current strength. An MRI to the heart showed us that his heart is performing well and we received thumbs up from his cardiologist! This is very good news as the heart and lungs are the major areas of certain for DMD boys.
His lungs are below average; they have collapsed slightly which is of some concern to his pulmonologist. RJ has begun using a BiPAP machine at night to help with his snoring and hypoventilation and the doctors hope that getting a better mix of oxygen and carbon dioxide in his lungs will help RJ get a better night sleep. RJ does fairly well sleeping with a breathing mask each night, but of course it is one more thing to add to his bedtime routine.
This past Fall, with the help of his endocrinologist, we decided to start RJ on daily growth hormone shots to see if we can add some inches to his height. RJ doesn’t seem to concerned about his lack of height, but we don’t want to lose the opportunity for him to gain some height before it is to late and his growth plates have closed. Medically, doctors say he has steroid induced short stature. After four years of being on daily steroids he has not grown much at all which is a side effect of his steroid medicine. We laugh with RJ about good comebacks when people comment on his height and the one RJ likes is, “I am not short just vertically challenged!” RJ is thrilled to finally be 48” and able to ride more rides at amusements parks! Although he does get comments about being in the 1st grade and he is repeatedly asked if he is old enough to take communion, it does not faze him much.
RJ is on a mission this year to add more pins to his United States map. He loves to explore and visit new places and then add a pin to his map, which is hanging in his bedroom. We hope to road trip to some Northeastern states this summer and add some pins for RJ (and hopefully see family and friends). RJ just loves social studies and is fascinated with the American Revolution so hopefully we can visit some historical sites. Also, since his Dad frequently works in New York City and New Jersey, RJ is excited to see where his Dad works when he is not home.