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.
Mama Laughs 
So precious
what a courageous little girl
How encouraging! I pray that this is something treatable and that she can cope with and overcome. I pray God continues to strength you as you deal with both children and also keep the healthy one included and feeling important. Thanks for sharing your journey. It strengthens all of us in our faith.
I believe I saw a little muscle growing as she walked! lol
She’s beautiful – we are so proud of her. Healing is on the way!
Isabella, your smile is contagious!! Pop and Nan have huge smiles and are loving the tiny-big steps you are making.. Hang in there….lots of fun times outside on the jungle gym are ahead. And climbing trees, too!!! We love you, little one!! God is watching you and helping you be big and brave!!
Isabella, you are doing wonderful!! Pop and Nan are so proud of you…One step at a time, and pretty soon, we will play ball in the front yard together!! Can not wait!! Stay strong Dad and Mom, all will be fine and dandy real soon. Gad is watching over Isabella and will keep her safe!! Love you!!
So proud of those steps, even with a gait trainer. So hopeful God will guide the Doctors through this journey with our beautiful Isabella!
Steps and Smiles Today! Hurray!!!!
Keep it up Isabella! Hugs and Kisses! Mipa and Mima
How sweet she is. She is a trooper. Keep going Isabella!! Praying you have results soon of how to treat exactly.
Wow, kids, looks like your Dr.. is onto something…..I am sooo happy for Isabella and all of you….My prayers continue for you all daily and anytime in between that my thoughts turn to you…..Love you all ♥♥♥♥♥ Nanc
Praying for your sweet girl and for all of you!
My prayers are with you all
Looks.like she is in good hands.
Following every post. Praying for all involved. Love to Isabella and her courageous family! Royce Sharon and all our family
Isabella, our prayers are with you. Your courage and positive spirit reminds me so very much of my daughter, Amanda, when she fought an autoimmune disorder . God bless you!
My prayers are with you and Isabella daily. She is such a precious gift from God!