Tuesday, December 30, 2025

12/30/2026 Dr Stanton WVU Cardiologist

12/30/2025

One Year Follow‑Up at Cardiology

Today marked Jacob’s one‑year follow‑up visit with Dr. Stanton, our cardiologist. Just like last time, we met with the PA, Ben, who gave Jacob a thorough exam from top to bottom.

The good news is that everything still looks normal. The only lingering issue is Jacob’s exaggerated heart rate, which continues to be managed with his medication. He remains on his beta blocker, metoprolol tartrate, taken twice a day as prescribed.

At home, I keep a close eye on his blood pressure and vitals, making sure we stay ahead of anything that might change. It’s become part of our rhythm—one more way to protect his health and keep him moving forward. Another appointment behind us. Another reminder that every stable report is a blessing!



Friday, December 26, 2025

12/26/2025 Pioneer Award

12/26/2025

Jacob was selected to receive the Erin and Leigh Vierstra Pioneer Award, presented as part of the Alex and Jaci Hermstad Rare Disease Trailblazer Series.

This recognition is given to individuals who are working to advance research and potential therapies within the rare disease community. To be counted among those striving toward progress—alongside families, advocates, clinicians, and researchers—is an honor.

The Trailblazer Awards ceremony will be held online in February, and I’m looking forward to celebrating the incredible people across this community who are pushing boundaries, lifting others up, and refusing to give up.

Thank you to everyone who has supported, encouraged, and prayed for us along the way. This recognition is a reminder of how far we’ve come—and how much hope still lies ahead.




Sunday, December 7, 2025

12/07/2025 UPDATE ON JACOB

 12/07/2025

✨ Update on Jacob ✨

It’s been two days since our unexpected ER visit, and I’m so grateful to share that Jacob is doing wonderfully! 🙌

For the first 24 hours, we relied on the water chamber (cascade) to help stabilize things. Now, Jacob has successfully transitioned to an HME (Heat Moisture Exchange). The difference is visible—you can actually see the moisture in his line now, a small but powerful sign of progress.

Moments like these remind us of the incredible power of prayer. Don’t ever stop praying!!! Each step forward is a testimony to faith, perseverance, and the love that surrounds Jacob.

We also want to extend a huge thank you to folks like Amy Malone for her guidance, and especially to Mike Walker—who has faithfully reminded us for two years that the HME was the way to go. Your wisdom and encouragement have been invaluable, and we’re deeply grateful for friends who walk this journey alongside us.




Friday, December 5, 2025

12/05/2025 A Scare, and Finding Moisture for Jacob’s Lungs

12/05/2025 

About a month ago, when Jacob’s trach was changed, we noticed something alarming: a lot of bright, arterial red blood. This ended up resolving itself after a 24 hour period. 

A month later, it happend again! At first, we thought it might be a nosebleed. But when it didn’t stop after two days, our concern grew, and we decided it was time to head to the emergency room.

At the ER, Jacob was scoped to see what was happening. Thankfully, his vitals were good—though his heart rate was elevated, as it always is when he’s nervous at the doctor. What they found was surprising: Jacob was extremely dry on the inside. His nasal cavity, sinuses, throat, esophagus, and especially the airway leading into his lungs were raw and irritated. In fact, there were scabs forming where the suction catheter had rubbed against the dry tissue in his airway.

After nearly five hours in the ER, we were discharged with instructions: medications for his nose to ease dryness, salves to soothe irritation, and most importantly, a way to get moisture into his lungs.

There are two main options for humidification with a tracheostomy:

  • Heat and Moisture Exchanger (HME): A small device that warms and humidifies air, replicating the nose’s natural function.

  • Heated Water Chamber System: A setup where air passes through warm water via two hoses, picking up humidity before reaching the lungs.

We tried the HME first, but Jacob couldn’t tolerate it—it felt too restrictive, like he couldn’t breathe. So we turned to the water chamber system. Though it’s a bit more equipment, it worked. The warm humidity eased his airway, and Jacob could finally rest.

We’re back home, Jacob is in bed, and all is well. We’ll keep monitoring him and follow up with our family doctor, but for now, we’re grateful for the solution that helps him breathe easier.