A Big Week for Everett & Continued Progress for Eiley

 We are so grateful for each and every one of you who has reached out, brought meals, and continues to support our family through this transition to a family of four. 

 

Everett received his one-time gene therapy infusion, Zolgensma, last week at just 20 days old—the same treatment Eiley received when she was just 31 days old. This is a huge milestone for our family. As part of his recovery, he will be on a daily steroid for at least 12 weeks, which means we’ve entered into quarantine to protect his health during this critical time. 

 

Because of this, we’ve made the difficult decision to pull Eiley out of preschool until the fall. She has been thriving there, so this wasn’t easy—but it’s a small sacrifice to give Everett the best chance to stay healthy and strong. Even though preschool is on pause, she will continue with her weekly therapies, where she is still making incredible progress. 

 

In aquatics, she floated on her back independently for 10 seconds and balanced on a noodle (like riding a horse!) all by herself for 10 seconds, showing just how confident she is becoming in the water. 

 

In physical therapy, she worked through DMI (Dynamic Movement Intervention) techniques and showed incredible balance on the boards with confidence and ease. Her occupational therapist has also noticed more intentional hip movement, something we’ve been working hard on since her DMI intensive with CLIMB back in January. It’s been so encouraging to see these skills carry over into her everyday movement, reminding us that all the hard work is truly paying off. 

 

Thank you for continuing to follow our journey, pray for our family, and support us in so many ways. During this season as we navigate caring for and advocating for both of our children, your encouragement, generosity, and prayers have carried us more than you know. We are deeply grateful for your love and support each and every day as we continue to give everything we have for them.