Kash Strong - Kashdon’s road through ADEM Recovery

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!

💙

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.

💙

11/17/2025

Last Wednesday we met with Urology. 2+ hour appointment and this boy rocked it, two ultrasounds and lots of figuring things out. Kash will have surgery in April (on the waitlist for sooner 🤞🏼) He needs to have an intensive impatient test done as well but we are holding off until after surgery with everything he has going on right now.

💙

11/10/2025

Kash had his wheelchair evaluation/ordering last Thursday at ChildServe - to say we miss this place is an understatement 🥹 we used to be here 2-3 days a week and these therapists were family. Since we’ve moved some of his therapies closer to home he doesn’t go as often. Miss Emily Wake met us at the front after she saw his name on the schedule for the day, we were so happy to see her! Kash grabbed her hand and started dragging her off to go play like they used to 😂 were were able to take a walk with her while waiting for his appointment 💙

11/06/2025

We’re searching for someone with a big heart and gentle spirit to join our support circle as a respite worker for our Kash. The ideal person would be caring, patient, understanding, and dependable — someone who sees the joy in helping others grow and thrive.

We’ll be holding interviews to find the right fit. If this sounds like you or someone you know, please reach out — we’d love to connect. 💙

You do not have to have the training already, we can help you complete it.

11/05/2025

Updates from the last month or so ⬇️

After U of I called a meeting with his neurology team in Omaha to get a percentage of how likely relapse of his ADEM is to determine whether the SDR surgery is an option we were told that with him having a positive MOG antibody in the past that leaves him at 30-80% chance of relapse. This number unfortunately had to be under 10% to move forward. This news was hard to take in the sense that this is the route we felt and prayed was most beneficial and also that we have not ever heard these numbers for relapse occurrence.

With that we are left with the baclofen pump as an option - IF the trial goes as expected. Right now we are scheduled for a trial at the U of I on November 21st. We will then determine with his team if he’s a candidate to move forward with for surgery. There are pros and cons of this route but we feel strongly that we have to give him a try at something for his quality of life at this point.

We met with an endocrinologist as well a little over a week ago, some things we are not sharing from this appt as they are personal to Kash. But he was referred to a urologist for a possible surgery, this appt is in January. He had A LOT of blood testing done this day as well. And we have discussed some more things that we have to watch for as his approaches puberty and what treatments we may need to move forward with.

Dentist checkup went great, such a big boy. He looked so grown up.

Kash loved Halloween and has had quite a few new words he’s added to his vocabulary lately which is so great to hear him say!

💙

10/13/2025

Recent hearing test - Kash passed! With the minimum scores in a few areas but we are clear for now! 🙌🏼

ABA is going well, he’s loving being around his friends again!

We only have a virtual appt this week and then next week back to Iowa city for a new specialist.

💙

09/29/2025

What a wonderful family day we had today!

We were recently asked to be an Iowa State Dance Marathon Family. Today we attended the Stacks for Stead event at Iowa Sate Campus where we were asked to speak and share our story. The kids enjoyed pancakes, bounce house fun, live music, face paint and so many sweet college girls to hang with and help us out! Including our Addie girl 🫶🏼

We ended the afternoon by Oaks getting her ears pierced and Stets getting his birthday build a bear.

Our hearts are full. A day much needed.

💙