This new program has been unlike anything we've done before—both in intensity and in the kind of hope it brings. Knowing that our child would have access to physical, occupational, and psychological therapies daily gave us a new sense of direction, something we hadn’t felt in a while. Walking in on that first day, we hoped that the structure of daily sessions and the compassionate approach of the team might be just what they need to start feeling like themselves again.

The team met us with such kindness, beginning with an assessment that felt more like gentle observation. They wanted to understand our child’s unique sensitivities, their limits, and even the way they respond to things like sound and light. By keeping it relaxed—playing a few quiet games to break the ice—they helped ease some of the fear that always comes with something new. That same day, we picked up a vibration ball  (Hypersphere by Hyperice), which has now become a comforting tool at home. It’s amazing how something so simple can help calm their nerves.

Over the next few days, we moved through a mix of activities. At one point, they did some screening for POTS,  where blood flow can be disrupted by simple movements, but they can't diagnose it.  It must be done by your Cardiologist. They checked his response to things like standing and sitting, and it made sense of some of the physical exhaustion our child often experiences. With guidance, we also learned about hydration, compression wear, and exercises that could help manage the effects. The therapist even introduced tools to help with balance—things like weighted blankets and small, vibrating tools to help ground them in their body which showed dramatic results even using them for the first time (Items like Venom Go and Hypersphere by Hyperice).

One morning, before a particularly challenging day of therapy, we took a short detour to the ocean (about 10 minutes away), where we just stood by the shore, soaking in the calm and touching the water. That afternoon, we returned to the therapy center to continue sensory and body awareness exercises, but that little ocean moment stayed with us and we plan to incorporate that further through this journey. The team introduced sensory toys, gentle music, and exercises for building stability, always with a patience that has helped our child slowly warm up to the process. Family therapy sessions have also become a way for us to navigate the more emotional parts of this journey. We’ve learned that sometimes, the hardest part is being okay with not having all the answers and just being there in support.

By the end of the week, pain relief was the focus. The team helped us try new tools like kinetic tape and taught us gentle pressure techniques to manage discomfort. They also suggested games and activities to help distract and unwind without feeling overwhelming, and that’s been a small gift in itself. Through everything, there were still moments when the pain felt unmanageable, and times when our child would check out emotionally or seem to forget small things from the day before. But we’re finding that, little by little, there are more good moments to hold onto.

After this first week, I can feel our family beginning to adjust. It’s been humbling and hard and hopeful, all at once. We’re learning new ways to support each other, and in that, finding a path forward, one small step at a time.