Slowly but Surely: Gavin's Next Chapter

Since our last update, Gavin has been moving forward—slowly, surely, and with a tremendous amount of hard work. Being home has let us see his progress in everyday moments: steadier steps, a meal enjoyed, a familiar task becoming a little easier. There is still a long road ahead, but there is so much to be encouraged by.

A Carefully Guided Recovery

Gavin is receiving care through the University of Pennsylvania’s neurology practice, working with specialists in new-onset refractory status epilepticus (NORSE) and status epilepticus (SE). His team is closely following his neurological recovery through EEG monitoring, bloodwork, and ongoing evaluations. Another brain MRI is coming up soon.

The reports from his care team have been encouraging, showing continued improvement as he recovers from the brain injury associated with oxygen deprivation, known as hypoxia. Each assessment helps guide the next steps in his care.

The Everyday Work of Rehabilitation

Gavin is also receiving neurological rehabilitation at Moss-Magee in Elkins Park, Pennsylvania. His rehabilitation has four main parts, each addressing a different piece of getting back to daily life.

Physical therapy focuses on walking, balance, and strength. Gavin is beginning to make great strides in his walking and steadiness, and seeing that progress has been incredible.

Speech and swallowing therapy addresses communication and the coordination needed to eat and drink safely. We are thrilled to share that Gavin has passed his swallowing test and can now eat just about anything. And yes—he absolutely crushes cheesesteaks.

Occupational therapy focuses on fine motor skills and the tasks that make greater independence possible. His formal occupational therapy at Moss-Magee is just beginning, but his mother and sister have worked with him since he came home. Through practical routines, repetition, and consistency, they have helped him practice using his hands and build back everyday skills. That steady, patient work is an enormous part of his recovery.

Psychological therapy addresses the emotional challenges of everything Gavin has experienced, alongside the complexities of his recovery and medication effects. He is approaching his situation pragmatically, but that does not make it easy. He still has plenty of fear of missing out—of wanting to be doing the things he feels he should be doing at his age.

That part deserves acknowledgment, too. Gavin wants his life back, and adjusting to the pace of recovery is its own kind of work.

Finding the Right Medication Balance

One of the most important parts of this next chapter is carefully managing Gavin’s medications. The medications that helped save his life—including those used during his medically managed coma and prolonged sedation—also have side effects that his team is working to address. His doctors are carefully adjusting doses and, where appropriate, gradually reducing medications through a process called "titration". For Gavin, this means balancing protection against further seizures with opportunities for greater alertness, improved physical function, and emotional well-being. Those decisions are being made carefully by his medical team, with his safety and long-term recovery guiding every step.

Thank You for Staying With Us

We are astounded by how far Gavin has come. We also see the effort behind every improvement—from Gavin himself, from his care teams, and from the family members beside him every day. To everyone who continues to check in, pray, visit, encourage, and support him: thank you. Your presence means so much as we settle into this next stage.

Slowly but surely, Gavin is moving forward. We are grateful for every step.

The Love That Carries Us Forward

I never believed in miracles or the power of love the way I do now. At every stage of this journey, we have had to rethink Gavin’s surroundings, the support he needs, and our expectations for the future. Bringing him home has been incredibly rewarding, but it has also asked a lot of our family. We would not change it for anything, and we are stronger for it. We have been able to do this because of the incredible people who continue to surround Gavin and our family with love and support. Please keep reaching out to him. Share your thoughts, your stories, and your love. Include him in your life as he works to rebuild his own. Those connections mean everything to him—and to us. Through all the uncertainty, your love has carried us. As Gavin keeps moving forward, that love will remain at the heart of every step.

Thank you, again. We love you very much.