09/13/2025 A New Carport for Jacob

 09/13/2025

Today was a beautiful reminder of what community looks like in action. Randy, along with five friends from our church, showed up with tools in hand and hearts wide open to help us build a much-needed covering for Jacob’s transfers from his room to our van. What they created is essentially a carport—tall, wide, and thoughtfully designed to shield Jacob completely from the weather. No more rain-soaked outings or scrambling to keep him dry.

The labor was going to be the most expensive part of this project, so having it gifted by friends was an incredible blessing. The materials were funded through a generous grant from Racing for ALS, and the final result couldn’t be more perfect.

Gratitude doesn’t even begin to cover it.

09/08/2025 Tracheostomy Change

09/08/2025

It has been 60 days since Jacob's last trach change. TOnce again, we called upon our friend, Jeremy Cobb, who has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was again, the best yet! 
Jacob was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down below 20 PIP and we experienced no issues whatsoever!

09/07/2025 Back on Glycopyrrolate

09/07/2025 

Controlling Jacob’s slobbers and excess saliva has been a challenge since stopping the Botox treatments. We elected to return to an old treatment, Glycopyrrolate. We started with .5 mg (a half pill) 3 times per day, but within a week, increased to 1 mg 3 times per days.

the 3 pills proved to be too much and the secretions became too thick for suction, so we backed it down to 1 mg Two times per day (morning and night).

this seems to be working nicely so far.

08/27/2025 Massage by Pam

 08/27/2025

After a small hiatus (due to personal issues), Pam returned today and massaged Jacob for a few hours. Sje said he still feels great, very little atrophy and muscle groups are still very much intact.

08/19/2025 Scary Movie Night

“Had a classic movie night with mom dad and Jacob the other night… he picked a spooky one, ‘Smile 2.’ We barely made it 40 minutes before he had enough and spelled out ‘Toy Story.’ Guess it’s back to the comfort of Buzz and Woody! 🤣🤣🤣”

08/09/2025 Wheelin' for ALS

 08/09/2025

Each year since Jacob’s ALS diagnosis, we’ve turned the trails into a beacon of hope. Jacob, a passionate Jeeper, lit the spark in 2022 with his vision for an off-road benefit ride. Unlike traditional walks, he wanted something everyone could join, even if they couldn’t walk. Our first ride raised $12,000 for ALS support. This year, on August 9th, we shattered records with $28,000. Scott Lloyd from Racing for ALS even gifted us the ADA-customized van we’d been using, a generous $90,000 gift. Through every twist and turn, our community keeps proving that together, we’re unstoppable.

07/29/2025 Havener Eye Institute

 07/29/2025

This was simply a follow up visit to Havener at OSU, Dr Pisano determined that the last set of lenses were perfect in doing exactly what they were designed to do. 

They scheduled Jacob for another 6 month follow-up.