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Kash Strong - Kashdon’s road through ADEM Recovery

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Kash Strong - Kashdon’s road through ADEM Recovery

Updates on our Kashdon and sharing our life with a medically complex child 💙

01/28/2026

Updates from the last week

- Fought off another virus of some sort
- Trying to figure out our new rhythm with appointments, monitors, machines and such
- Still wearing his binder and dressing changes every day per neurosurgery after meeting with them last Wednesday and restrictions until the 6 week mark
- Started out patient therapy today, 4 therapies a week
- Pump appt tomorrow for a check and increase, he’ll have these each week as well
- Follow up with pediatrician today

We have had a lot ask about his incision sites and questions so sharing photos of the day after surgery. Once completely healed we will share again. He really is such a trooper with a very high pain tolerance, impressed all of his care teams 😅

💙

01/21/2026

Our boy did it! Onto the outpatient side we go! 🙏🏼

01/21/2026

Day 16

- HOME 🤍
- Clap out (video to come) 👏🏼
- Kash has some swelling/bulging around in bis pump area of his abdomen after being released from wearing his ab binder yesterday so we are back to wearing it until we hear from neurosurgery
- Neurosurgery appt tomorrow afternoon (virtually)
- Pump increase again today to 154.4
- Had outpatient PT and OT evals today before we left
- Delivery of his home oxygen machine and pulse ox reader this afternoon, they are coming again in the morning for more fittings of his cpap
- Break for a few days before starting the other side of this journey on the outpatient side

Thank you to everyone who checked in on us, visited, prayed and everything in between!! He did it, he made it through the hard part. And did it with hardly any complaints, he truly is 💙💪🏼

01/20/2026

Days 14 & 15

- pump increase today
- stitches out today!! + caribou snuggles during 🤎
- therapies
- lots of getting things ready for home, tomorrow is the plan! Long road with outpatient things but it will be so good for us all
- a wonderful visit from Chelsea Larsen & cousins Ryker and Rennick did our hearts some good 🫶🏼
- really rough evening for Kash emotionally and with behaviors but he is now content and finally resting 🙏🏼

Praying for safety and calm over his body as he doesn’t fully understand and I’m starting to feel it physically from lifting and carrying when he is eloping.

💙

01/18/2026

Days 12 & 13

- pump increase Friday to 120
- feeling better!
- visits from daddy, brother and sister
- still have a ways to go with finding his dosage on the pump
- really good therapy sessions + was able to use the vector after finally being cleared by neuro surg
- still struggling with o2 at night even with being on extra

💙

01/16/2026

Days 10 & 11

⁃ Pump increase again yesterday and today
⁃ Two amazing visitors Great Grandpa and Emily Pennington
⁃ Lots more therapy sessions
⁃ Poor buddy is not feeling well today. They think a combo of the virus & med increase. He is currently napping and he is not a napper
⁃ Has had a headache off and on today as well so we gave extra pain medicine
- Caribou visits and music therapy 🤍

Please pray that he can feel better soon and get back on track, it’s hard seeing him not himself.

💙

01/14/2026

Day 9

- tested positive for rhino adeno, virus (mostly common cold) so he has to wear a mask outside of his room. Doing well fighting it so far.
- had to be put on oxygen again last night and also had trouble with low heart rate. He now has orders for oxygen every night and will go home on it for nights. Insurance is being a pain with his cpap parts so we are trying to get that all straightened out. Doctor is contacting his cardiologist at U of I to see what steps they want to take.
- working SO hard in his therapy sessions. Still doing four every day here.
- he still has a lot of tightness, a ways to go with the pump until we find the sweet spot for him but it’s a process. Planning to increase again tomorrow.
- new hand brace ordered, working on new helmet
- the best part of his day Grammy Sonya Gwinn came to visit!

01/13/2026

Day 8

⁃ Had to be put on oxygen during the night - levels dropped. The new med can affect this but he also has severe sleep apnea so hard to tell which caused it.
⁃ Medial equipment coming in the morning to get the right piece put on his CPAP and get back to wearing that each night
⁃ Four therapy sessions today, rocked each one even though he was exhausted by the end
⁃ Increased his pump to the next titration - he’s now at 72.2%

This boy is a trooper, seriously such a fighter and hardly complains at all. Just keeps working hard.

💙

01/12/2026

Day 7

- slow day with no therapies on Sundays
- loves shower time
- played lots
- dressing changes, looking amazing!
- resting up for a big week of work 💪🏼

💙

01/11/2026

Day 6

⁃ One PT session today, a break tomorrow also and then back to 4x a day next week - he really struggled at his session but better as the day went on
⁃ Labs
⁃ Had trouble with blood pressure last night but good today 🙌🏼
⁃ Got to “do” chicken chores with Grammy via FaceTime 🥰 loved every bit of it as he’s missing his chickens!
⁃ A special visit from the O’Rear Kate O'Rear
Fam sure brightened our day and brought some much needed smiles!! ❤️

💙

01/10/2026

Day 5

⁃ Two therapies this morning, combined the two this afternoon together, got to go outside for that one! Fresh air was good for us all
⁃ Conference call with his whole team here, our goal date of discharge is the 20th. Talked goals and progress as well as outpatient therapy once discharged.
⁃ Increased his pump to the next percentage again today, he’s now at 59.99 over 24hours
⁃ Noticed a new decent sized bruise later this afternoon below his pump incision, after meeting with a couple doctors they have decided they think he has blood pooling from his procedure that has now settled there. For now they don’t think it’s an active bleed and we will keep a close eye on it.
⁃ Shower and dressing changes
⁃ + all the other “normal” things 😅

Prayer requests: Continued healing and comfort, success in the results, we could also really use prayers for peace for our little family. Being torn and separated from each other is not going smoothly. We knew it would be tough but we still have a ways to go 🙏🏼

💙

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IA-68
Melrose, IA
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