It was a little rough in the beginning. I even called rheumatology to talk about how I thought he may not be tolerating the every ten days. Trick or Treating he barely made it back to the house. He limped in and practically collapsed on the floor. He said his legs hurt. His energy was low the next couple days that followed. I decided to call them on Friday just to let them know. My doctor is awesome. She is patient and kind. I was happy to call back on Monday to say, "nevermind" : )
I think Halloween was an overdue. We went to parties and had our own. Constantly on the go. This time it was just that. I do think he did respond to the spacing of the methoprednisone infusions, but his body I think was able to level out, stabilize on its own.
His nail folds are doing something weird, but I don't think it is from dermatomyositis. If it is, it must have something to do with the recovery or healing of the veins. He has been chewing on his nails quit a bit. I wish he wouldn't but he does. Bright red bumps and skin peeling. I am not concerned.
His skin looks good. Calcium deposits have leveled out. The same. Some have gotten smaller, some have got a little bigger, some are the same. His elbow is now closed. We have been not covering it. It does get irritated around the edges sometimes. But calcium "crusts" out of the wound. After a shower, it is rinsed away. He has one in his bottom that is still there. Slowing changing. Not doing much. As long as he doesn't complain.
Kindergarten is going well. Slowly catching up on missed work. That has been a challenge for us. It is hard for a Mom to make your baby do something they don't feel like doing at this age. But I am learning, be tough, and so will he.