Going into our third trip back to the clinic, we were feeling positive about what to expect after all our progress with brace wear. We had improved to an average of 18 hours per day—up from just 4–6—and Azalya was even sleeping in her brace every night.
The car ride down was smooth and traffic-free. We left earlier this time and arrived at the hotel by 3 p.m., which was nice. Our first stop was our favorite Chinese restaurant for the infamous Crab Rangoon that Azalya (and I) love so much. After dinner, we headed back to the hotel to get settled for the night and prepare for our early morning MRI appointment at 7:45 a.m.
Thankfully, many of the same patients from our previous visits were there again, which gave Azalya familiar faces and friends to spend time with during therapies throughout the week.
When we met with the doctor, we learned that the brace Azalya had worked so hard to wear 18 hours a day had lost most of its corrective power and was no longer holding her spine in position. It was heartbreaking—three months had gone by, and it felt like we’d lost valuable progress.
After numerous brace adjustments and several MRIs each day, the doctor was able to “power up” the brace more than ever before, producing incredible in-brace results. They take MRIs both in and out of the brace to measure correction. Our new instructions were simple: adjust to the tighter brace as quickly as possible to achieve better results before our next visit.
Breaking in a brace feels like starting over every time it’s powered up or replaced after she outgrows one. These challenges will continue with each visit, but they’re part of achieving the best long-term results. This time, the doctor sent us home with replacement straps and “power-up” pads to swap out every four weeks to maintain correction as the brace loosens with wear.
In therapy, Azalya has grown much stronger—she can now do push-ups and planks on her toes, a huge improvement from where she started six months ago. As a result, her core workouts have increased in intensity. Her SFT chair was also adjusted for a deeper stretch and greater correction. Just when she thought things were getting easier, both the brace and therapies were ramped up to push her progress even further. We’ve learned to expect these ups and downs throughout the entire treatment process.
A few of her friends who have been in the program for years graduated to the stabilization phase of rehab. They were able to return their SFT chairs and spinal weights—signs that their braces and daily core work were enough to hold their corrections. It was inspiring and motivating for Azalya to witness; one day, that will be her milestone too.
We stayed at a hotel with three other patient families, which made the evenings fun and restorative. Daily swims, BBQs, and s’mores by the fire helped us all unwind. (Azalya even found a dead squirrel under her chair at the campfire—gross and funny all at once!)
We’ve already planned our next three clinic trips alongside other families, giving her something to look forward to each time. Those shared moments and friendships make the long journey feel a little less endless.
We hope these quarterly clinic updates bring encouragement and connection to anyone on a similar path. Your continued support means so much to us—it’s humbling and deeply appreciated.
Until next time!
