Josiah has been on his 21mg dose of prednisone for 3 weeks now. For the most part, no real changes in behavior; maybe a slight increase in frustration at school, but overall, pretty normal. We are so thankful for this and pray he continues to be fairly side effect free. It was difficult for me to start him on the medicine. I know that changes are coming in the future, but the thought of my little boy experiencing some drastic mood/appearance changes now was a hurdle I had to face. I have seen pictures of families with a boy with Duchenne's. It is very apparent; but even these changes don't happen overnight, and if this medicine can help him have an extra two or three years of mobility and delay scoliosis concerns, we'll deal with the changes when they come. Josiah has been amazing with taking his medicine. We told him it wouldn't taste very good, but that he needed it to help his muscles. He takes it every morning without complaint, and even reminds me to give it to him. 

We have a few upcoming appointments at Duke. February 20th we go so that Josiah can be fitted with nighttime orthotic braces. These will help keep his heel cord from contracting at night; for boys with Duchenne, that contracting can cause increased difficulty with walking. That same day he will also see a pulmonologist for a pulmonary function test, and we will meet the cardiologist (Josiah has already had the cardiology tests). These appointments are for a baseline function level, and then every year they will test his heart and lungs and note any changes. 

In March we go back to follow up with the neurologist. At this time, I dont' see any real changes to the "plan". In the event there are any drug trials that Josiah might qualify for, a standard requirement is 6 months on prednisone, so we have a bit longer before that comes up. He will continue with speech therapy for his cognitive delays, and he is next on the wait list at a local physical therapy office. 

All in all, life is pretty normal. Bennett and I have our times and our thoughts and our quiet fears, but mostly we try to just be thankful that today Josiah is here and he can walk; that Chandler and Garrison are also happy and healthy; that we are together.