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!

…Begins with a Step

We are making progress this week learning about Isabella.

In addition to lots of labs, she’s getting a muscle biopsy and muscle MRI today. This will be a long hard day for her. But she has remained a trooper.

The current belief is that Isabella probably has dermatomyositis.

Not all of the labs line up, but there are some flags (LDH and AST are slightly elevated so far) so the muscle biopsy and muscle MRI will help us be sure. To be fair, diagnosing many of the autoimmune or inflammatory myopathies can be complex and look different in each patient. (Many of you have messaged me with how your own diagnosis was confusing or took time.).

In the meantime, they are starting treatments regardless. She’s on her second day of IV steroids here and we will continue treatment at home. I love that we are not only getting close to a diagnosis, we believe treatment is possible and are hitting the ground running.

Speaking of hitting the ground running, we’ve been meeting with Physical Therapy while here to get ideas for strength building, especially now that we are closer to treating the underlying issue.

I asked about a gait trainer and they had one small enough that Isabella would just fit. Her maiden voyage went well! She was being pushed, but lifting her feet was all up to her. The PT said typically you see a kid fight it, or try to take a step. Isabella tried to take steps!

Lots of them! As we pushed her around the hall she seemed to enjoy it. (I may have been bribing her with grapes.) She made an entire loop around the floor with the staff looking on in awe. Daddy asked if she wanted to stop when her feet were getting tired. She said “no”, so we kept going.

No matter what we are dealing with Isabella has a long road ahead of her to fight to gain strength. That spirit is going to serve her well. And we will keep going.

*If you weren’t aware of how weak Isabella had become the last few months this may be hard to see. Just know she’s a smart, sweet happy girl, we are incredibly hopeful, and she sure seems like a fighter. I am energized by the current path.