02/11/2026 A Great First Visit with Our New ENT

02/11/2026

Today we had our very first appointment with our new ENT at Valley Health, Dr. Thomas Jung. He was the Emergency Room doctor who treated Jacob back in early December when he had bleeding in his tracheostomy. Walking into today’s appointment, we already knew he was sharp and compassionate, but this visit confirmed it even more.

Before I go on, I want to be clear: we were never unhappy with our previous ENT, Dr. Lyndsay Stull. She took excellent care of Jacob during those first few visits two years ago, and we’re grateful for everything she did. Over time, though, Jacob simply didn’t need ongoing ENT follow‑ups, and as his care has become more centered around the Huntington network of hospitals, it made sense to have someone closer and more readily available if something urgent ever came up.

Today’s appointment with Dr. Jung was fantastic. He took his time, listened carefully, and then used a scope to examine Jacob’s airway. After looking everything over, he smiled and told us Jacob looks great. Hearing those words never gets old.

And then came the part that really hit us: our next appointment isn’t for another year. A whole year. That’s not just scheduling—that’s a statement about how well Jacob is doing. Another reminder of how far he’s come and how faithfully God continues to carry him.

Praise God for His constant Grace and Mercy. We see it in every breath, every appointment, every bit of progress. And today was another beautiful reminder.

02/10/2026 “Erin & Leigh Vierstra” Pioneer Award from Project ALS

 02/10/2026 

Today was an emotional and unforgettable day.

Jacob was honored with the “Erin & Leigh Vierstra” Pioneer Award from Project ALS, part of the Alex & Jaci Hermstad Trailblazer Series.

This prestigious award recognizes individuals who show extraordinary courage, participate in clinical trials, and help advance research for the ALS community. Past honorees include Anna Kämpfer (2024) and this year, Jacob Harper (2026)—remarkable people whose dedication reflects the same spirit we see in our Jacob every day.

The full ceremony can be viewed at the link below.

https://youtu.be/f1fddDiRe0w?si=gDsTCShMAnLuBUlz

02/05/2026 SPICY SOUP & More

 02/05/2026

Jacob has been asking for all kinds of things down his feeding tube lately—Tabasco, Barb’s spicy homemade soups, you name it. Tonight she made him another batch of her famous pizza soup, but he turned it down.

He just typed out:

“That hot stuff is making my butt burn.”

Life with Jacob… never a dull moment.

02/05/2026 Occupational Therapy with Emily

02/05/2026

We have the most AMAZING support system for Jacob.

Massage by Pam, Ben at Teays Physical Therapy and our sweet friend Emily Kearns They show up as often as possible and work with Jacob! Emily does Occupational Therapy with our little buddy, regardless of the many irons she has in the fire!

We LOVE our peeps!!!!

02/01/2026 Tracheostomy Change

02/01/2026

Another successful Trach change, thanks to these AMAZING guys and prayer (of course)! Thank you Mark and Jeremy! We love these guys!

01/12/2026 Treatment #19 ION363 PHASE III #4

01/12/2026

Yesterday we were back on the road to Ohio State University for Jacob’s 19th clinical trial treatment (Jacifusen / ION363). Even writing that number feels surreal. When Jacob was diagnosed, we were told his life expectancy was 1–3 years… and that was four years ago. Yet here he is — still fighting, still smiling, still defying every expectation placed on him. Every trip reminds us of how far he’s come and how much grace has carried us.

We’re deeply grateful for this trial, for the team behind it, and for the chance it gives Jacob to keep moving forward. God has been faithful every step of the way, and we don’t take a single day for granted.

We made it safely to Columbus, and the day kicked off with the blood draw. Mary — affectionately known as the “Blood Whisperer” — worked her magic once again. She’s one of the few who can get Jacob’s blood without a lot of trouble, and we’re so thankful for her steady hands and kind spirit.

From there, we headed into the clinic for the usual round of tests and prep before the lumbar puncture. It’s never our favorite part, but we walked in ready. Not long after, Dr. Kolb came in grinning, full of energy and optimism. He said Jacob looked fantastic — great color, strong muscle mass — and he even felt Jacob move both legs and saw his eyes move. His excitement was contagious, and it set the tone for the rest of the day. We claimed it right then: this is going to be a GREAT day..

After all the poking, prodding, and medical hurdles, Jacob decided he’d earned a reward. So we went to see Zootopia 2 — and we were the only ones in the theater. The movie was great, and the quiet, private showing felt like a little gift at the end of a long day.

God is good. Our team is incredible. And we’re grateful for every single day Jacob gets to keep fighting!

01/02/2026 FOUR YEARS LATER!

01/02/2026 

January 2, 2022, was a Sunday—the second day of a brand‑new year, tucked into week 52 of the 2022 calendar. It was the first Sunday of the year, the 13th day of winter, and there were still 77 days until spring.

It was also the first of many times Jacob would fall.

01/02/2022

Jacob fell at church today. He was stepping down from the drum riser and hit the floor. This, along with the limp, prompted us to contact Dr. Clark Adkins, of West Virginia Ortho Neuro. Clark wanted to see Jacob, so he asked me to call Kim at his office and schedule an appointment.

We had no idea what road we were stepping onto. No idea how long, how heavy, or how miraculous it would become.

Yet through every step, God has been faithful.

What doctors once described as a 1–3 year life expectancy has now become year four… and we are still here. Jacob is still here. Still fighting. Still smiling. Still blessed beyond measure, even in the midst of disability.

And through it all, this promise has carried us:

“But now, O Jacob, listen to the Lord who created you.

O Israel, the one who formed you says,

Do not be afraid, for I have ransomed you.

I have called you by name; you are mine.

When you go through deep waters,

I will be with you.

When you go through rivers of difficulty,

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God,

the Holy One of Israel, your Savior...”    Isaiah 43:1–3 (NLT)

Four years later, this scripture feels even more true than it did that day.