Happy New Year

Hope everyone had a great Christmas or whatever holiday you celebrate. We had a holiday and spent it with our families, near and far. I hope everyone was able to spend it with family.

We had an appointment at Stanford yesterday and we are going to increase his medicine because he has been red and blotchy. He also has swollen lymphnoids (spelling?)that were going to have an ultrasound done to see whats happening there. D. Lee does strength test during his visits and his hips are weaker and left leg again. His blood work didn't look bad but it is fluctuating. We also see Dr. Pachman on the 1st of February in Chicago and are interested in what her take is on all this. We hoping that soon he will be in remission and not take any of these meds any more.

People always say to me "but he looks so good" and he does but it's all internal. We wouldn't have found out that he has this Disease if it wasn't for his rash. He was acting fine and never complained about anything hurting, itching, any soreness nothing. We only were seen by Stanford in the Dermatology department because of the rash on his face. We were blown away when we heard "muscle disease". We did notice that his energy level was down but he never complained and still doesn't. Research shows that kids with JDM with no rash have gone years without being diagnosed because the side effects are leg pains, aches, or weakness which have been passed off as growing pains. We were very lucky to have the rash involved.

Increasing his meds means side effects are going to be more of an issue but we will take it as it comes. I'm going to try and update at least once a month, I know sometimes we go months but I have not had any reports but I will try and update more. Thanks for reading, I know some of you have read this on Facebook already but were worth it right?