One year ago – we finally hit a point in an almost year long journey where we had an answer.
Isabella was sick. But Isabella didn’t have a death sentence. Isabella could be treated. There was hope.
When I see her today, she is so vibrant, so happy, so enthusiastic for life that I can’t reconcile who she is today back to who she was one year ago. It’s unbelievable to my own eyes, and I’ve watched along every single step.
On March 5th, 2019, I took Isabella to her Neuro Muscular appointment. Armed with auto immune blood results I had requested on my own, and printed resources about dermatomyositis, juvenile arthritis, as well as a couple of non-auto immune less likely ideas like Rett and Tay Sachs, I wasn’t going to leave until they took auto immune seriously and we had a more aggressive search plan. Upon seeing her again, and getting negative SMA results and red flags on auto immune…auto immune was agreed to be a front runner. She was admitted, with an MRI and a biopsy same day. Additional tests. Additional doctors involved, including rheumatology. We had an answer. It was juvenile dermatomyositis. Odds were 3 in 1 million, and even then her onset was on the very early side of things.
They started steroid and IVIG treatments immediately, with numerous doses in the hospital. We had an issue with outpatient treatments at first, and between her immune system being in chaotic upheaval and the issues with treatments, she was admitted again for continued steroid and IVIG in April, and admitted one more time Easter weekend when her poor immune system went haywire and she developed an infection. But we were on a path and could feel it. Despite those 3 hospitalizations, we were already starting to see progress. She ended up with weekly treatments an hour away administered via IV. Tired veins and two PICC lines later she now has a Port that works incredibly well, and she can take a treatment in under 4 hours and gets to do so at home. She can talk the nurse through it, and it the BEST patient.
From a developmental stand point, she started to see improved head and neck control, and improved swallow function within weeks. Soon she would play for longer, and engage with her toys more appropriately. Her posture improved, she began to tolerate tummy time again, and before you know it, therapy was fun instead of torture. She started crawling in May at the age of 25 months as we were moving in to our new house. She had AFOs to help with her ankle strength. She borrowed a gait trainer but outgrew the need in a matter of two weeks. She borrowed a walker and paired with her AFOs started to gain real independence around the house and the day care, even navigating the mulch of the playground on her own. She started to cruise the furniture. In July, when I was in the PICU with Landon, Isabella took her first steps to a chorus of cheering and counting cousins, and she hasn’t slowed down since. These days I have to tell her not to jump on the couch, to be more careful, and to slow down. But deep down I’m not sure I mean it. I love her fearlessness. I love her strength. I love that she is living life loudly, boisterously, and at times, carelessly. Because she’s doing it all from a place of strength and joy.
In the course of the weeks and months leading up to March 5th 2019 I had been told by various different doctors it wasn’t auto immune, it wasn’t dermatomyositis, she was too young for some of the items on the list, the regression was too serious so it was likely neuro muscular, and my favorite…I was probably holding her too much. All while watching her slowly, and then quickly, crumble before my eyes. This phase was so hard for many of us. I was emotionally and mentally drained. But of all involved, I cannot begin to imagine what it was like for Isabella. Now that I know her spirit, her zest for life, and how loud and exuberant she really is, it’s that much more clear how miserable she was while all of this was happening to her. I can’t give her back the time it took to figure it out – but I can do everything in my power to help her make the most of each day, and live up to her name. Isabella Reese. Enthusiastically devoted to God. She is a blessing, her life is a miracle, and I am honored to watch her soar.