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.