08/02/2026 Diabetes?

 08/02/2026

The past few days have brought news we never expected, and we’re still trying to catch our breath.

The hospital has determined that Jacob has a slight pseudomonas infection in his tracheostomy, along with MRSA. On top of that, we learned he is now an insulin‑independent diabetic. This diagnosis came as a complete shock. It felt like it appeared out of nowhere — but his blood sugar told the story. It climbed all the way to 800, when a normal range is 70 to 99. He was in a very dangerous place, and we are grateful he was already in the hospital when this happened.

We are still in the ICU, and according to the doctor, Jacob will not be moving to a step‑down unit. When he is discharged from ICU, we will go straight home. That alone tells you how carefully they’re watching him and how much support he’ll need once we leave.

Jacob is going to be on a significant amount of insulin. Even his formula from Kate Farms contains more sugar than his body can handle right now, and every feeding causes his levels to spike. We’re working closely with the team to figure out what adjustments need to be made so he can stay stable.

But here’s the part that feels almost unbelievable:

In spite of the infections and the diabetes, Jacob actually feels very good. And I can only imagine how much better he will feel once they get his insulin dialed in and his diet corrected so his levels stay in a normal range again.

Looking back over the last three weeks, the signs were there — extreme thirst, constant urination, and symptoms that were becoming harder and harder to keep up with. These are classic signs of diabetes onset. But when you’re caring for a 27‑year‑old young man with ALS, diabetes is not the first thing you think of. Once again, hindsight makes everything clearer.

It’s been a lot to take in — infection, MRSA, diabetes, ICU, new routines, new risks — all at once. But Jacob is fighting, and we are right beside him. We’re leaning on God’s grace, the skill of his medical team, and the strength that has carried us through every chapter so far.

One step at a time. One breath at a time. And as always, thank you for lifting Jacob up in prayer.

07/31/2026 Hospital Bound

 07/31/2026

Today, Friday, July 31, turned into one of the hardest days we’ve faced in a long time.

Jacob woke up seeming fine, just like any other morning. But by 2:30 in the afternoon, everything changed. He stopped responding — no knee movement, no reaction to my questions, nothing. At first, I assumed he was just having trouble moving his leg, so I fed him as usual. Our friend Randy visited for a while, and we watched TV through the afternoon, hoping he’d perk up.

But as the evening went on, my wife and I grew more and more concerned. No matter what we tried — even things that would normally make him cry — Jacob just stared off into space, completely unresponsive. It was like he wasn’t even with us.

We called our friend Mark Toole, who is an RN. Mark came right over and checked all of Jacob’s vitals. Everything looked okay on paper, but the lack of any response was too serious to ignore. At 8:30 PM, we called 911. The ambulance arrived before I even hung up the phone.

The paramedics worked on Jacob in our driveway for a long time and determined he was septic. He was rushed to CAMC Hospital, where he went through a battery of tests — bloodwork, urinalysis, CT scan, chest X‑rays, and more.

At 2:00 AM, Jacob was admitted to the ICU.

He is still unresponsive.

Doctors have confirmed pneumonia and a severe infection they are still trying to pinpoint. His white blood cell count is extremely high, and he is septic. He is also in Diabetic Ketoacidosis (DKA), likely triggered by the infection.

We are exhausted, scared, and praying without ceasing.

07/15/2026 Our Two‑Day Adventure to See Big Boy 4014

 07/15/2026

When God Redirects the Journey: Our Two‑Day Adventure to See Big Boy 4014

Most of you know that since he was a baby, Jacob has loved trains — not just loved, but absolutely adored them. He could identify steam engines by their whistles before he could even pronounce half their names. So when Union Pacific restored the legendary Big Boy #4014 for America’s 250th birthday and sent it across the country, we knew we had to try to get Jacob in its presence. This wasn’t just a train to him — it was a once‑in‑a‑lifetime dream.

Day One: The Heartbreak in Fostoria

We woke up at 6 AM Tuesday morning and made the long drive to Fostoria, Ohio, where Big Boy would be on display from 9 AM to 3 PM. We arrived at 1:30 PM… only to find traffic backed up for miles. We inched forward for nearly three hours, crawling through a three‑mile stretch of cars.

By the time we reached the train yard, it was almost 4 PM — and the exhibit had just closed.

We explained Jacob’s situation. We explained the long drive. We explained that he has ALS and that this moment meant the world to him. But there was no empathy, no exception, no “let’s see what we can do.” We were simply turned away.

To make matters worse, even viewing the train from a distance was impossible. A large white tent had been set up for an employee event, completely blocking any view of the massive locomotive.

We drove to our hotel an hour south of Fostoria, and the van was filled with disappointment. At one point we looked back and saw tears rolling down Jacob’s cheeks. That sight broke us. We knew we had to find another way.

The Community Responds

I posted a short message on Facebook about what had happened. Within minutes, messages started pouring in — people trying to help, offering ideas, making calls, doing whatever they could to help Jacob see Big Boy.

We decided to drive another hour northwest to Continental, Ohio, where the train would stop the next morning for 20–30 minutes before heading to Fort Wayne.

I called the mayor’s office and spoke with Cindy, who was incredibly kind. She couldn’t guarantee anything, but she told us the bank across from the tracks had handicap parking and that if we arrived early, we’d likely get a spot.

I posted that update — and immediately got a call from Joey Stevens, our youth pastor at Winfield Baptist Church. Joey was thrilled we were heading to Continental… because he used to live there. His wife Christie worked at the bank — with the mayor, who was also the bank president.

Within minutes, Christie made a call, Joey made a post, and suddenly we had a guaranteed handicap spot as long as we arrived by 10 AM.

Day Two: God Opens a Better Door

We woke up at 5:45 AM and arrived in Continental at exactly 8 AM. Our spot was waiting for us — reserved, protected, and perfect.

And this town… this town is filled with some of the most wonderful people we’ve ever met. True salt‑of‑the‑earth folks. We instantly fell in love with them.

We met Joey and Christie’s family — her parents, her sister, her niece — all of them came out to meet Jacob and spend time with us. We met an older couple from North Carolina, and a gentleman originally from Poca, WV. Everyone was kind. Everyone was excited for Jacob.

The police told us that if we stayed under the shade tree, we wouldn’t be able to see the train because the street would fill with spectators. They encouraged us to move right up to the tracks — and we did.

But the heat was brutal. Jacob’s skin is extremely sensitive now, and we were worried about sunburn. Around the corner was Okuley’s Pharmacy & Home Medical Equipment. They were closed for the train’s arrival, but the door was unlocked, so I stepped inside.

A gentleman told me they didn’t sell umbrellas, but he thought they might have some old ones in the back. A young lady went to look — and came out with two very old umbrellas, probably from the 1940s. They gave them to us with a smile.

We strapped one umbrella over Jacob’s torso and one over his legs, and his little battery‑powered Menards fan kept him cool in the 93‑degree heat.

The Moment God Had Waiting for Him

When the train was close, someone up front shouted, “Let’s move aside and let this young man up front!” And the crowd parted like the Red Sea.

Jacob had a front‑row seat to the greatest, largest, most powerful steam locomotive in the world.

He saw it arrive. He heard that thunderous whistle — multiple times. He watched it depart, pulling its full consist behind it.

I filmed the entire thing so he can relive it anytime he wants.

God’s Timing Is Always Perfect

Looking back, it’s clear: God closed the door in Fostoria because He had something better waiting in Continental.

He used His people — Cindy at the mayor’s office, Christie and Joey, the folks at Okuley’s, the Continental community, and yes… even the ones who turned us away. Because every step led us to the moment Jacob was meant to have.

God loves us more than we can ever understand. And He always has a plan — even when we don’t see it yet.

“Trust and obey, for there’s no other way, to be happy in Jesus, but to trust and obey.”

07/01/2026 TREATMENT #21 ION363 PHASE III #6

07/01/2026

This week marked Jacob’s 21st clinical trial dosing of Ion363 (Jacifusen), and it was a stretch of days filled with relief, gratitude, and one terrifying moment that reminded us how quickly life can turn.

Because Dr. Kolb was out of town, our usual Monday appointment was moved to Wednesday. We headed to Columbus early Tuesday for Jacob’s optometrist visit, where Dr. Pisano gave us great news — the redness we’d been worried about was simply dryness, easily fixed with drops on the sclera. A simple solution, and a huge relief.

Early Wednesday morning we arrived at the Martha Morehouse Center for Jacob’s lumbar puncture. Dr. Kolb remains cautiously optimistic — scientific, steady, and hopeful — and praise the Lord, the procedure went perfectly.

By late afternoon Jacob felt good enough for a mall trip, leaving with new Crocs, sunglasses, and a Midland album. Back at the hotel, we settled in for a movie… and then everything changed in an instant.

During a routine trach suction, his respirator somehow powered off. When I turned back toward him, Jacob was ghost white — not breathing. We still don’t know whether it was a malfunction or something accidental, but Heather from Apria will be checking the machine. Thankfully, my wife stayed calm and yelled for the cough‑assist. It worked immediately, Jacob’s color returned, and I was able to power up the backup respirator. We won’t use the faulty one again until it’s cleared.

After that terrifying moment, Thursday’s quiet drive home felt like a gift.

Another dose behind us. Another hurdle cleared. And another reminder of how quickly things can change — and how grateful we are for every safe, steady step forward.

06/23/2026 More Eye Redness and Irritation

06/23/2026

When we pray specific prayers and tell the Lord exactly what we need, He is faithful and always answers. Sometimes we may or may not know what that answer is right away, but isn’t it amazing when you can see the answer almost immediately?

The first picture was Jacob’s eyes at midnight last night… The second is this morning.

Barb prayed specifically for his eyes last night!

Believe what you will, but…

“As for me and my house, we will serve the Lord.” Joshua 24:15

06/22/2026 Bidet Turned Super Soaker

06/22/2026

Jacob's Massage Therapist, Pam, came over today to give Jacob his weekly massage… and left looking like she’d survived a water‑park ride she never signed up for.

At one point she went to the restroom. What she didn’t know is that years ago we installed a bidet seat for Jacob — and the handle sticks off the side in the exact spot you’d expect a flusher to be.

Well… Pam hit the “flusher.”

Except it wasn’t the flusher.

It was the launch sequence.

Our bidet has a delayed reaction, so she pushed the handle and nothing happened… at first. Then the little sprayer slowly extended itself out of the toilet like it was introducing itself. Pam, confused, leaned in closer to inspect this mysterious object emerging from the seat.

And that’s when the bidet said:

“Target acquired.”

It blasted her straight into Pam.

Shirt soaked. Floor soaked. Pride soaked.

She came out of the bathroom looking like she’d been baptized by a fire hose.

She said she couldn’t figure out how to turn it off, so she just slammed the toilet seat shut and surrendered. Barb had to clean the bathroom like we’d hosted a kiddie pool party in there.

Pam’s final words on the matter:

“I’ll just go to Sheetz from now on.”

06/20/2026 CASS Parade of Steam

 06/20/2026

Since Jacob was 18 months old, we have taken him to "Cass Scenic Railroad" almost every year! He loves those Shay Locomotives, the steam power, smell of burning coal, and those beautiful one of a kind whistles! Since his ALS diagnosis, making the 8 hour round trip, with 2-3 hours onsite, has become increasingly difficult, but he was determined to go this year. SO...HAPPY West Virginia DAY!

On the parade's first pass... he cried. He truly loves that place and even had a job opportunity there, prior to the ALS.