Isabella: Two Weeks Later

Isabella’s progress during week two has been remarkable! Stronger, better posture, better neck strength, and enthusiasm for hard work!

Day care was thrilled to get her to sit on a bicycle! Her balance is actually very good.

She’s much more tolerant of tummy time. She’s much more tolerant of everything actually! It breaks my heart a little to consider how miserable she’s been for months now. But so grateful for the sweet, sassy, strength that is emerging.

Isabella: One week later

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.

Progress:

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. 😍

Isabella is HOME!

Isabella made it home a few moments ago. During her unexpected but incredibly productive hospital stay she was evaluated by neurology and rheumatology. They diagnosed her with juvenile dermatomyositis. (JDM)

Her blood work wasn’t particularly remarkable, and her age of onset was an early outlier, but her muscle MRI and muscle biopsy told a clear story.

They gave her IV steroids each day, with oral steroids continuing at home. She was also given two doses of IVIG.

PT evaluated her and is helping set us up with a gait trainer.

Speech evaluated her and with recent weakness in her neck as well as her swallow function she’s aspirating on thin liquids, so we will thicken a little until she regains her strength and coordination.

We are relieved and thankful, more than I can possibly express, to have a path forward, and a treatable answer.

Thank you for your prayers and encouragement! Get ready to watch this girl soar!