Kash Strong - Kashdon’s road through ADEM Recovery

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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01/09/2026

Day 4

- rocked all of his therapy sessions
- got a shower! Did so good with the new shower chair
- definitely wanting to move and be back to his normal but doesn’t understand how unsteady he is and how we have to be very careful right now
- dressing changes
- first increase of his pump, we should be able to see results by morning fully
- got to join music therapy!
- had a hectic morning of just a bunch of small frustrating things but the best part of the day - ALL THREE OF OUR BABIES together for a little bit this evening, bro and sis loved visiting Kash 🥹

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01/08/2026

Day 3

- slept really good last night
- first dressing change and first time for us seeing his incision sites, wow this boy is tough!
- made it to Child Serve in Johnston to the impatient rehab unit! The ride was a little rough
- Kash has been making friends already here and already did some playing with therapy
- it’s been a big day full of meeting everyone and a lot of evaluations
- has been taking quite a few steps!

Tomorrow’s plan: first thing in the morning will be his first titration of increasing baclofen, shower with OT assistance and then start therapy sessions. He will have OT and PT each two times a day, four sessions.

He is truly a rockstar even through all the pain! 💪🏼

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01/06/2026

Day 2

The procedure went as planned and we made it to a room yesterday evening.
Kash is experiencing quite a bit of pain, we started a third pain med last night. He’s on some meds for nausea and antibiotics as well. Had labs this morning and neurosurgery was in to check on him. They plan to change all of his incision site bandages tomorrow under his binder. He just had his first physical therapy session this afternoon. He was able to get out of bed for the first time and made it five steps assisted! Even through the pain he did it, such a strong boy. His goal is to sit in the chair or wheel chair 4 times a day for 30 minutes to an hour and see how he tolerates it.

Thank you all for the prayers, praise that the procedure went smoothly. Praying for comfort and healing 🙏🏼

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01/05/2026

Today is the big day. Kashdon will undergo surgery to place an Intrathecal Baclofen Pump. The pump will release Baclofen into his spinal fluid to help with his high tone, spasticity and hypertonia. They will be going into his spine and his abdomen to place the port/pump and the catheter. Surgery is scheduled for 3 hours. We will then be admitted here at the U of I to the Neurosurgery floor for a few days and then transferred to inpatient rehab at ChildServe in Johnston for 1-2 weeks. We will update as we can later today. Praying for this to be what he needs to relive him of pain and give him better muscle function as well as keep from anymore damage to his bones and muscles 🙏🏼

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12/29/2025

A day with our littles for some quality time before Kashdon’s upcoming surgery on 1/5, he will be inpatient approximately 2 weeks. Kash and I head to Iowa city tomorrow for a day full of preop testing tuesday. He got some 1:1 time with Grandma T today!

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12/08/2025

💙💙💙 the silent battle.

Special needs parenting isn’t just hard. It lives in me, all day, all night, never letting go.

It’s the guessing that’s getting to me right now.
The not knowing.
The trying anyway because I have to.

My brain feels stretched thin from thinking three steps ahead while I’m still trying to understand what’s happening in front of me.
Every move feels like a calculation made in the dark.

There’s no pause in this life.
Not in the day.
Not in my head.
Even when the house goes quiet, something in me stays switched on.
Listening.
Tracking.
Bracing for the next shift I can’t predict.

And the tired from that…
it’s a different kind of tired.
Heavy in a way that doesn’t show on the outside.
Sharp in a way sleep doesn’t fix.

Sometimes it feels like I’ve run out of places inside myself to put the weight.
Like the thoughts have nowhere to land, so they just keep circling.

And that’s where I am right now.
Somewhere between thinking too much and still not knowing enough.

- Christine | Special Soul Mama

11/25/2025

MRI looked good and Kash made it all night without meds! We get to go home!! 🙌🏼

THANK YOU for the prayers!

Surgery to place the pump is scheduled for January 5th.

11/25/2025

MRI was at 10am, still waiting for those results. If a leak is found he will need to undergo a blood patch surgery. If no leak we will continue to monitor with the treatment they’ve been doing. He has a post dural puncture headache + symptoms that go with that, the doctor said it happens to 4-12% of patients that undergo a lumbar puncture. No infection detected in labs 🙌🏼 The current plan is to stop all three meds they are giving along with stop his IV that’s been going constantly at 9pm tonight and test the waters to see if he’s still having symptoms without. If he is he will be hooked back up and continue to be monitored otherwise we should be able to hopefully head home tomorrow if he gets the all clear!

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11/24/2025

We were admitted at around 3am. Still running tests and waiting for an MRI time. This boy is very thirsty and ready for something to eat, hoping to hear a time very soon🤞🏼

11/24/2025

We are back in Iowa City at the ER. Kashdon has had a headache all day and vommited again this evening. After speaking to the on call neurosurgeon she asked we come straight here for labs and an MRI to check that there is no spinal fluid leaking from the lumbar puncture or anything else going on. He’s in pain and not himself, please say a prayer 🙏🏼

11/21/2025

Update 2: all unhooked, PT team as well as neurosurgery came back to evaluate. We noticed better posture while walking. His toes were straightened more. We didn’t notice much with his right hand being improved but still very thankful and hopeful that piece will come with time. He was still able to use his left hand functionally, which is great news as we were watching that to make sure he didn’t lose function in it. Overall it was very successful trial and we have decided to move forward with surgery and hope it brings some relief as well. About 10 minutes after we got on the road Kash vomited in the car due to the anesthesia. They were able to call in nausea meds and those worked well. He had a great night of sleep.

Thank you God for answered prayers! 🙌🏼 we will have a for sure surgery date next week, but we are looking at January or February. Thank you all for your prayers and kind words!

Update 1: Out of OR and back to his room for recovery, finally woke up and was ready for food lol. Stats are stable.

Kashdon just went back to the OR for his baclofen pump trial. They will be doing a lumbar puncture with fluoroscopy. The procedure will take about 1-1.5 hours. He will come back to the room for recovery where he will then have to lay on his back still for one hour. After the 3 hour mark, he will then be evaluated again by neurosurgery and PT. We are praying this trial is successful so we can complete the surgery and get him some relief! 🙏🏼 will update as the day goes on.

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