Today marks 45 days at Phoenix Children’s Hospital, and we are so incredibly proud of the progress Rylee has made.

This week brought a big milestone — she was transferred out of the ICU and back to the kidney floor! After everything her little body has endured, this felt like such a huge victory. She was able to come off continuous dialysis (CKRT) and is tolerating regular hemodialysis really well. Watching her handle the transition has been such an encouragement to us, as her first introduction to HD was not the greatest.

Our first day back on the floor was a bit rocky. Rylee was slightly dehydrated and her blood pressures were running pretty low. The team placed her on a “Level 2 Watch,” meaning they’re keeping a very close eye on her. It was stressful in the moment, but we’re grateful for how attentive and proactive her care team is.

On top of that, we learned she has a small blood clot in her neck that will need treatment to protect her HD catheter. She’ll be starting daily Lovenox injections, likely continuing until transplant. In the grand scheme of everything she’s faced, we know this is manageable and very treatable — and we’re thankful it was caught early. Still, it feels like icing on the cake after such an excruciating hospital stay.

For now, we continue forward with hemodialysis and careful monitoring of her blood pressures, hopeful that we may be discharged sometime next week.

We want to end this update on what matters most — the positives. And lately, there have been more positives than negatives! Rylee’s personality is starting to shine through again. She’s smiling more, talking more, and slowly but surely regaining her strength. She’s sitting up on her own here and there, showing us that same resilience she always has.

Thank you for continuing to follow along, pray, share, and support our family. Every message, every donation to COTA for Rylee, and every act of encouragement means more than we can put into words. 💛