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!