06/17/2023 Parade of Steam

 06/17/2023

One of Jacob's favorite annual events is the Cass Scenic Railroad Parade of Steam. Jacob made sure, during his peg tube surgery, to ask his nurses and doctor if it would be OK for him to go to this. They assured him it was fine and also told mom and I that it was OK. 

So today, we had a very good day at the Cassie Parade of Steam!

If you are interested in the Parade of Steam, please take a look at our very brief video from this year's event.

https://youtu.be/h8EqVzJKHFo?si=vamv5m5lt0K4E14z

06/12/2023 Feeding Tube

 06/12/2023

Jacob's continued weight loss and fear of choking led to PEG tube placement. We were concerned about the surgery and anesthesia, but once again, prayer and God's mercy prevailed! The surgery was performed at Cabell Huntington Hospital and, other than a little bit of soreness, there were no issues whatsoever. Home health care (Tyler), visited us for the first few weeks, but determined that we did not need their assistance and discharged us. Jacob took three cartons of Jevity formula on the first day, and four cartons on the second day.

05/15/2023 More Blood Tests

 05./15/2023

New blood work at Dunbar medical shows the liver enzymes (ALT) down to 203.

04/30/2023 #6 ION363 Dose... FINALLY

 04/30/2023

Off to Ohio State for Jacobs 6th dosing of Ion363 (Jacifusen), over 4 months since his previous dose. His weight is now 137 pounds or 62.3 kg. The dosing was perfect, no issue!

Dosing side effects would include a headache for the next several days.

04/26/2023 More Bloodwork

 04/26/2023

Back to Dunbar Medical for more blood work, via LabCorp. ALT levels now down to 229!

04/14/2023 Dosing Postponed... AGAIN

 04/14/2023

Dr. Kolb called to push Jacob's next dosing out to May 1st! Huis liver ALT levels are still entirely too high and the sponsor is concerned. They fear ion363 may be, at least partially, to blame for these elevated levels. 

Since two of our previous lab results from Marshall Health had been compromised, I took Jacob to Dunbar Medical to allow LABCORP to perform the bloodwork. This strategy paid off, because the ALT levels were down to 245... a 123 point drop since his blood work two weeks ago! 

Another answered prayer!

04/05/2023 Dosing Postponed

 04/05/2023

Our upcoming dosing, scheduled for April 10th,  was postponed til April 17th, due to Jacob's elevated liver enzymes. We stopped the drug, Riluzole, back in March, but his numbers are still very high. On this day, April 5th, his readings were 368 (ALT)!