08/26/2024 Follow up with Dr Stanton (Heart)

 08/26/2024

Today was our follow up appointment with our heart doctor, Dr. Stanton. We did not see Dr. Stanton, but instead saw Dr. Nancy Elwood. She was amazing! Jacob's heart rate is still very high. At today's appointment it was 111 BPM. Dr. Elwood elected to up the dosage of his metoprolol tartrate to 50 mg twice per day. This is up from 25 mg twice per day. She suggested we purchase a good quality blood pressure cuff, so we stopped at CVS pharmacy on the way home and bought a very nice Omron Series 10.

08/20/2024 BOTOX and Levofloxacin

 08/20/2024

Appointment with Dr. Hollinger at Marshall Health for Botox injections. 

On a separate note, Jacob was experiencing pain in his right ear. Dr. Hollinger suggested we see Dr. Trump. Jeff was able to see him same day. He determined that the ear was not actually infected but was definitely irritated and suggested a seven-day run of levofloxacin, very mild antibiotic, which Jacob has taken in the past.

08/13/2024 Tobramycin Round 3

 08/13/2024

We started Jacob's third 28-day round of Tobramycin. This will be administered via nebulizer twice a day for the next 28 days. We will then run another 28 days off of the drug, followed by another appointment to see if we need to keep up this on/off routine.

08/10/2024 Wheelin' for ALS

 08/10/2024

Today was our THIRD annual Off-Road ALS fundraiser, Wheelin' for ALS. We had a pretty good turnout with local ice cream vendor, Lickity Scoops, on premise (BIG HIT). 

We did not take Jacob on the ride this year. The tracheostomy and lack of cell service on the trail, made it a challenging decision, but we feel the right one was made. We ended up right at $21,000 raised this year and will be supporting Racing for ALS, Marshall University and The Ohio State University. All three are on the front lines of supporting people with ALS and/or attempting to find a cure for ALS.

08/05/2024 LEG MOVEMENT

 08/05/2024

Occasionally, Jacob will tell us to look at a specific part of his body. It's because he can feel that he is able to move this limb, either for the first time, or more since the last time. Today, he had major movement on his left leg. This was the most substantial movement we have had since suffering total paralysis.

08/04/2024 Tracheostomy Change

08/04/2024

It has been roughly 90 days since Jacob's last trach change. We were scheduled to do this on August 10, but since our off-road ride is scheduled for that day, I elected to do it today instead. Following Dr. DeSilva's advice, I "flushed" the trach prior to making the change. 

The flush consists of deflating the inner cuff, while suctioning. Then reinflating the cuff and stop. Repeat this procedure three times. Doing this allows any excess buildup of drainage to run towards the lungs, while suctioning it back out. The whole point of this procedure is to keep Jacob from getting sick. Every time we've done this change, he has had a slight fever, with body aches and chills. He would be lethargic for a couple of days after every tracheostomy change.

Unlike previous times, Dr. DeSilva's procedure proved to be the trick! This was the best change we have had since the beginning. No fever, no sickness, a perfect change!

07/24/2024 McDonalds Fundraiser

 07/24/2024

Tonight was our second annual McDonald's fundraiser. We use this event to raise funds for our "Wheelin' for ALS" event. McDonald's hosted us from 5 PM to 8 PM, with a portion of the store sales going to our cause, as well as donations from tip buckets located around the property. The Winfield Baptist Church youth group showed up to assist both in and out of the store. It was a HUGE success, which brought in approximately $2000 in total raised funds for the night!