We have been home from Isabella’s diagnostic hospital stay for one week. During that stay she was diagnosed with Juvenile Dermatomyositis.
She has continued a daily oral steroid, and is drinking thickened liquids.
We have a follow up appointment scheduled but are waiting on the follow up plan for IVIG. There may be a closer center or an at home option.
Isabella is NOT crawling, pulling to a sit or stand, cruising, or even bearing much of her weight.
But we are already seeing small improvements. Her skin has improved a lot. She is scooting on her butt again, and can make multiple trips across our apartment living room with a little motivation. From a mobility stand point that opens up a much more playful world.
Her demeanor is different. She clearly feels better. She’s funnier, more alert, sassier (hello steroids!), and more verbal. She’s happier, presumably in far less pain.
She’s also willing…to try, to exercise, to do our therapy routine. Muscle building will take time, but she is working hard.
Tonight daddy got a walking harness out. It was a Christmas present. When we tried it at Christmas she was miserable then went limp and cried and cried. I cried too. She was so weak. I felt helpless.
This video shows her not only being willing, but enjoying trying it. She even had an idea of her own as she neared the end of the hallway.
These pictures show improving balance and posture, as well as an interest in pushing her doll (still with tons of help for now). We are still helping her almost as much as ever, so the assistance from us is unchanged for now. But those smiles while doing it…they are new. 😍