Life decisions

There isn't a clear path, nothing has cured the problem. There isn't a road that leads to health or a long healthy life. So what do we do?
Those are some of the struggles/questions that we have as we walk down the DMD path. Since nothing has had great success a lot of what we are advised to do is experimental. There isn't a sure thing,there isn't one magic bullet that will solve the problem.
Medical decisions that will effect Kyle's life are pretty intense decisions. We thought, prayed, and researched the steroid he has been on for the last 5 years. It isn't FDA approved, we get it from England. We knew we didn't want Kyle on prednisone. Although this steroid works great in the short term, it will kill him long term. Currently Deflazacort (which Kyle is currently on) does not have some of the horrible side affects. But it isn't without risk, long term use will eventually effect him negatively. But short term it allowed him to walk and move better for longer.
Each medical decision is difficult and painful. It is not decisions that we look forward to, but decisions that will have life implications on Kyle.
Yesterday Jill had lunch with a mom with a boy with DMD, he is currently 18. Two years ago they had a decision to make, he could go on a ventilator or he could choose to die.
Jill and I have begun to dialogue about this, a decision we don't want to think about or even talk about this but this has to be decided.
It probably isn't any different talking about a loved one in their 80s having the same decision to be made but it feels different when talking about our child who will be in his late teens.
It is much easer to not talk about these type of things, but this is part of reality for us and for many other people of terminally ill children.