reaching out

I reached out to the neurologist last night over the rash, and woke up to a response e-mail. I truly love this guy. He is amazing and willing to look and find answers. Even if it seems so far fetched!

His first e-mail asked if I possibly had photos. So I sent what I had and as much of an explanation of what I saw and when it happened.

By lunch he had e-mailed me back. He thinks he knows what it is, and that it is a type of auto-immune response. He said he couldn't pin point it without seeing JD in office. He offered to open up a  time slot just to get JD in. He mentioned that the best for any of auto-immunes would be to continue the steroids. So we continued on the Prednisone for one more.

He did say he wished that we could see what the progression of the rash would be. So after a brief discussion with JD's father, we thought it best to follow through with the Neurologists idea. He said he did not want to contradict the primary doctor, but he wished he could see what it would do. Well, the primary wasn't looking at anything other than it was environmental. So we felt it best to trust one of JD's specialists. Since JD wasn't screaming and complaining from the rash any longer, and seemed to be a lot less itchy. So we allowed it to do what it would do.

We'll see how the rest of the weekend progresses. But I'm hopeful that his body will have relaxed on it's own. No more rash, and let's hope it goes away for good this time! His poor little body, and just himself, has been through way too much already!!

JD returned to see his ST at rehab, and is so happy to still be seeing her. I asked for some other exercises to work with JD. I need to be able to do something with him at home to help things. It's just super frustrating to me that I can work every other weakened muscle in his body to make them get stronger and more range of motion. I can't work his throat. I have no ability or way to force it to work. I feel hopeless in that regards. But I am so thankful that he has such an amazing therapist involved. And when all his other therapists released him to the school for the rest of his therapies, she felt she needed him to stay. He will continue going for some time. We haven't seen enough, or any, progression in his swallow. So we have appointments through the end of April. I just hope by April we have progressed passed purees.

So busy day with great information and hopeful progress!