Kash Strong - Kashdon’s road through ADEM Recovery

02/19/2026

Kash had his first port access and med refill in his pump on Tuesday, he did so good. Yesterday we had a post op appointment in Iowa city with Neurosurgery, his incisions are healing wonderfully and he is lifted from all of his restrictions 🙌🏼 We are seeing new episodes that the neurosurgeon thinks may be seizures so we are keeping a close eye on those. We also discussed that with some side effects to his respiratory system it’s best to slow down on increases in his pump for now and let him grow a little more. It’s such a fine line in wanting to see progress but keeping his body safe.

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02/14/2026

Recent Updates

- Got cleared last Friday to not have to wear dressings over his incisions but other restrictions are still in place for now
- Increased his pump again last week to 200 (10%)
- We are starting to notice some change in his legs as we are doing stretches, yay for seeing some progress with the pump!
- Went to Omaha last week to meet with his new pulmonologist/sleep med Dr. He was amazing and took his time. It was one of those ‘information overload’ appointments. He was referred to a new GI doctor in Omaha, has to have another swallow study at blank and has two new machines coming to the house. Cough assist and automatic suction machine. The baclofen is a muscle relaxer so it can and most likely will affect his troubles he’s already had with coughing/choking, breathing, etc. We discussed a lot more in depth things as well, but that was the main new news.
- hit up the zoo after
- took a really bad fall, but thankful all turned out okay

So thankful for a doctor that caught all that has been missed in the past and what he needs now going forward as things change too. We head to Iowa city on Wednesday for his 6 week follow up.

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02/02/2026

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 😅

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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.

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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

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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.

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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.

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