John's Journey

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John's Journey John was born with an extremely rare neurogenetic disease, Type 2 Gaucher's Disease. John and his family need your prayers and support.

Follow this page for updates.

Day 41. No changes today, but looking very cute! 🥰 ✨️
10/09/2026

Day 41.

No changes today, but looking very cute! 🥰



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Day 40. John trialed an hour on HME today, and it went really well for him. Otherwise he spent the day just hanging out ...
10/08/2026

Day 40.

John trialed an hour on HME today, and it went really well for him. Otherwise he spent the day just hanging out and watching Winnie the Pooh. 🍯



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Big brother Mark went to the hospital Halloween party today that Child Life put on for siblings! He had the best time! 🎃...
10/06/2026

Big brother Mark went to the hospital Halloween party today that Child Life put on for siblings! He had the best time! 🎃🕷

Day 39. So far today, John has been visited by physical therapy, and he got his second parent trach change (four more pa...
10/06/2026

Day 39.

So far today, John has been visited by physical therapy, and he got his second parent trach change (four more parent trach changes to go).

Philip and I also attended an early morning CPR class, so that's more step checked off and one step closer to home!

We also decreased his methadone just a little more today, from 1.3 mg to 1.2 mg every 6 hours. His home dose is 1 mg every 8 hours.

$2 Tuesday!

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Day 38. 3:40 am Update: John got hit with lots of extra secretions the past couple of hours, and got a plug in his trach...
10/05/2026

Day 38.

3:40 am Update:
John got hit with lots of extra secretions the past couple of hours, and got a plug in his trach that required an emergency trach change. Now he's getting an extra full respiratory treatment, and will continue to get treatments every 2-3 hours to keep his lungs clear until we re-evaluate sometime later today.

I was woken at 3:00 by his vent alarms because John had coughed so hard the vent popped off. I placed it back only for it to pop off again, and that happened with his RT a few times as well. Not the way I thought tonight was going to go!

Picture of John looking very happy and proud of himself right after all this. 💛



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Day 37. The only update is that we've started weaning down his methadone dosing from every 6 hours, back to his baseline...
10/05/2026

Day 37.

The only update is that we've started weaning down his methadone dosing from every 6 hours, back to his baseline dosing every 8 hours. So far its going really well!



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Day 36. The face plant every night is hilarious. 😂❤️ ✨️
10/04/2026

Day 36.

The face plant every night is hilarious. 😂❤️



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We are looking for a home health nurse for John in the Kansas City area!
10/03/2026

We are looking for a home health nurse for John in the Kansas City area!

Day 35. No update because John is in a good place right now. 💛
10/03/2026

Day 35.

No update because John is in a good place right now. 💛

Day 34. John is off all IV drips now, and his secondary IV was able to be removed! This is such a huge step for John! We...
10/02/2026

Day 34.

John is off all IV drips now, and his secondary IV was able to be removed! This is such a huge step for John! We will continue to keep his port accessed for his weekly ERT, and for potential emergencies.

John's trach care coordinator came by this morning to chat, and there is finally a plan with real dates on the calendar for our next trach care class and our trach CPR class. If all goes well, our tentative discharge date is November 11th.

Very slow but steady progress in the right direction.

Picture below of John watching his daily Winnie the Pooh. 💛🍯



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Kansas City, MO

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