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.

Action indeed!

I came in to this morning’s appointment hoping to broaden the considerations and increase the test plan. To say they have jumped in to action would be an understatement.

Isabella got admitted so they can move through tests, and start a steroid treatment! She has been a trooper. It’s been a very long day. She’s snoozing in my arms now.

She has had a great attitude so far. If despite her aches and pains she can put on this sweet smile, I can certainly remain hopeful and optimistic too!