|I think this is in the running for our Christmas Card.|
Tuesday, November 16, 2010
I wanted to pop in on Gary's blog and put an update. He is doing good. Remember my color scale I posted couple months ago. Well lets bring it back.
I think I will leave it at where it was back then as well. I am still not convinced. I see small signs like all the sudden he will look like he is sun burnt. November in Washington, that is not possible. It is what his skin did in the beginning when he was first diagnosed. I have blogged about this before that yes we have been to not being able to walk very well and not swallowing, to recovery in that aspect. But in the aspect of being close to finding Gary's magic drug combination, NO, I am not convinced. Last week Gary was acting a little off. It is hard to keep a three year down. He often has amazing energy so it is very noticeable when that energy diminishes even slightly. Last week I noticed. There was something about his face. It was in his eyes. It was being asked to be carried. He was more red than usual. Saturday it all came to a climax. On a personal note it was very climatic because my sister's 40th surprise birthday party was happening. Auntie Amy had said those very words. "Watch, he is going to be in the hospital during the party". Saturday, he began throwing up. He was with Daddy. I told Daddy to get him home as soon as possible so I could leave the decorating and come evaluate him. There he was, white and uncomfortable and throwing up. He also had gotten gum in his hair right before he got sick so he was quite the sight. He threw up twice while I was home. I called rheumatology to see what I needed to do. They told me if he didn't keep his steroid dose down, he would need to come in for a pulse. She told me to try sooner than later so we wouldn't need to come in late. We gave his steroid and he fell aspleep. Daddy stayed home with him and I went to the party with a cell phone on my hip. All my family and friends were there. I was a zombie. I could barely think. I love my sister dearly. We put a lot of work into her party, but I just wanted to be home with him. But he was sleeping and fine at the point. I planned to go home when he woke up in case that steroid came back up so we could go and to the ER and get the pulse. Thank the Lord it stayed down. He woke up feeling much better. He started eating and was playing the Wii. The rheumatologist called on Sunday night to check on him. I thought that was very nice. So he has since recovered. But WOW I was hard to keep my head in the game. Being around friends and family helped a lot though. It is nice to be around people who know your worry because they have the same worry.
He is doing fine now. But something was brewing last week and it was written all over his face. What is curious to me is that no one else has gotten sick. So determining whether or not it was in fact a stomach virus, or his JDM is on my mind. In September when we did go into the ER and he was throwing up with a fever, it was in fact his JDM. Although he did not run a fever this time nor did the calcinosis inflame this time, I wonder what it was. He recovered quickly, just like he did in the hospital in September. The calcinosis seemed to be backing off but last week I noticed it increase in size in some area's, like on the inside of his arms. The skin around those particular calcinosis sites look ominous. But we will see. I feel like we are at least in control somewhat. I guess.