Our 5k run and other medical updates💙

What a beautiful day celebrating Weston at our 5K yesterday! 💙 We are still overwhelmed by the love, encouragement, and support shown to our family. The funds raised will go directly toward Weston’s physical and occupational therapy, helping cover both his weekly therapies and future intensives. We are so incredibly thankful!

And a little update on Weston because, as always, there is so much going on behind the scenes!

We’ve recently completed another round of genetic testing and hope to have results within the next three weeks. We’ve done genetic testing before, but because of the rarity and complexity of Weston’s condition, we’re having to dig much deeper in hopes of finding answers.

We also have several appointments coming up, including physiatry to evaluate his hips, equipment needs, and overall physical development.

Weston has an upcoming sleep study to monitor his breathing and oxygen levels overnight, as we suspect obstructive sleep apnea. We may be looking at adenoid surgery with ENT as well. We’re also hoping to learn more about his nighttime seizure activity through EEG monitoring.

We’ll be meeting with a dietitian who specializes in the ketogenic diet for epilepsy, hoping to find better seizure control and possibly improve his sleep. We’re also navigating whether Knoxville can provide all the specialized care he needs or whether we’ll need to transition some of his care to Vanderbilt.

There are always so many moving pieces in caring for Weston, but yesterday was such a beautiful reminder that we aren’t walking this journey alone. There are people who love Weston, pray for him, and support all that goes into his care every single day. Meeting people yesterday who know Weston’s story and have been praying for him, even though we’d never met, was something I’ll never forget.

I truly believe Weston’s story is so much bigger than anything I could have imagined. God is writing it, and I’m just so humbled that I get a front row seat to watch it unfold. 💙