I cannot believe it has been almost a whole year since we have found out about Ben having DMD! Actually, November 28th to be exact. In some ways it still seems so new and that we still have so much to learn. I have gone in spurts in my research over this last year. Right now, I am in the middle of taking a "research break". We've been too busy with other things recently.
This last week, our church had revival. Being the pastor's family, this was a time consuming week! But, oh so wonderful!! We had a great time! I did notice that Ben fell more this week and I wonder if it is because he was tired. We stayed up late, and were busy almost all day, every day. He fell a few times each day :o(
At our last clinic appointment, Dr. Flanigan said that he wanted to increase his steroids from 15 mg per day to 18 mg. He also said to use up what we have and then start it. We still have about 3 weeks' worth left. This increase should alleviate him falling so much again.
Other than the falling this last week, he is pretty much the same. I did notice that he scooted down the stairs a few times instead of walking down them. He has not been real consistent in wearing his night splints. They just don't seem to fit right. Dr. Flanigan said if it continues to be a problem, he will need to be fitted with a different kind, and the new ones would not be adjustable.
That's it for now.
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