Welcome to Gary's Mission to Remission!
Juvenile Dermatomyositis, a rare autoimmune disease.
Saturday, November 21, 2009
Gary is still doing pretty good. Last week I tried really hard to chase this rash down. I even got on the phone with a doctor in Maryland to see what she thought. She recommended a dermatologist. I had called before getting on the phone with her to see if they could refer one but it didn't come up. We were too busy talking about doses on his new medication. I posted a few pictures on the board over at Cure JM to see if any of the parents had any idea's. I have a few concerns about active JDM rash. Gary's levels are good and his energy are excellent. Even if it is a JDM rash I wonder if there is much to do about it. It really raged last week, but this week is starting to look better. Once piece of advise someone gave me is that there son too had rashes come on go like that. They are slow to go away. Even if it was active JDM, his labs would have to reflect that. Then I would sit here and wonder when the weakness is coming back. BUT it is not. The twisted world of having a child with Juvenile Dermatomyositis. God is so good to protect Gary from all the sicknesses that are going around. He is so funny. I went to a midnight showing of New Moon on Thursday. He was watching Calliou went I left. He was watching Calliou when I returned at nearly 4am. Poor buddy had taken a spill down the front steps. It cut his knee up so he couldn't sleep. Although as soon as Mama crawled in bed with him he went to sleep. He slept till noon. OK FINE WE slept till noon. AAawwww that was nice.
Like I said, which I am sure any parent can relate that has JDM. How's is Gary doing? Great, he has a disease. I know, I am bratty. Yesterday we went to Childrens for a lab draw. The kids had half day so they came along. Oh joy. Everyone looks at me like I am over populating the world. We had daughters twin (Kapri, my best friends daughter) with us as well so it just added to the effect. They were running around putting on medical masks. Squirting hand santizer. If you need to make someone uncomfortable, let me know. I will rent them out to you. LOL Just kidding.
I am looking forward to Christmas. Not the money part but most definitely the decorations and being with family. I am looking forward to Gary losing the steriod weight and the paleness from the chemo. It freaks me out when he takes a nap.
I have waited long enough. It is time. CHRISTMAS MUSIC is here! Time to put the tree up as well.