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.