Kash Strong - Kashdon’s road through ADEM Recovery

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.

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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!

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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.

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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.

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09/27/2025

I’ve been trying to find the energy to write an update but sometimes the mental exhaustion is a lot to handle, so a little behind but here we are.

We met with the Neurosurgeon and the PMR doctor at the U of I last week and an eval with a surgical PT. Kashdon has a combination of Spasticity, dystonia and hypertonia. We are looking at two different spinal surgeries. Spinal Dorsal Rhizotomy (SDR) or Intrathecal Baclofen Pump (IBP). There are pros and cons of both. Jarrod and I have made a decision on which route we would like to go but all is pending an answer from his neurology team in Omaha. As some of you may remember, Kashdon has a 13.1q chromosome deletion - neurosurgery met with his genetics team to make sure there wasn’t any spasticity noted/chance of it being related to the deletion, there is not, just from his brain injury (ADEM) in 2019. BUT, in typical fashion for us, to make it more complex, Kashdon tested positive at that time for the MOG antibody. ADEM itself is usually a one time event but when you have a the positive MOG antibody the chance for relapse is higher. If his neurology team puts the chance of relapse lower than 10% then the SDR surgery will still be on the table, if higher than that he will only be a candidate for IBP surgery.

We are praying for guidance as we make a very difficult decision either way. We should have an answer and plan sometime next week.

We were back in Iowa city this week for a checkup for Kash’s port wine stain birthmark - good news as he was cleared for only as needed appointments for now! No laser surgery needed at this time.

The last update is on his nose surgery he had 2.5 weeks ago, he has still had a very “messy” bloody nose since and some bleeding. After talking to the doctor yesterday they had us start another spray 3-4 times a day and watch it over the weekend. If no improvement or worsening we will go back next week. He stated that it was a very intensive cautery and it’s possible that’s why it’s taking so long to heal.

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09/25/2025

FINALLY back to “school” ABA therapy today after being on hold for close to two months due to insurance (we have a love/hate relationship with insurance but we won’t go into that 😅) and this boy was SO happy and excited! Had a great day seeing all his friends and therapists again! Happy day.

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09/17/2025

Hi all! We are speaking at an event in Ames for the Iowa Dance Marathon at Stacks for Stead’s this month and wanted updated shirts to wear to the event. We’ve had a few people ask if we would be doing them again so we wanted to share the link here as well if anyone is interested. We are not making any profit on these, we just simply want to share in case anyone wants to order.

All shirts/sweatshirts are available in the three colors, once you click on the product you can select the color and size. Kids sizing is also available.

Here is the link:

https://franksdesignsboutique.com/collections/kash-strong-apparel

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Welcome to Frank’s Designs & Boutique! If you have any questions feel free to contact us. Happy shopping!

09/10/2025

Kash underwent a surgery for his nose this morning. He had the other side done last April and has been experiencing his bad bloody noses again so it was time to go back in. Unfortunately they had to end up doing both sides. After being put under they used afrin on both sides to prepare for the cautery on the left side and check out the right side but as soon as they did, he started to bleed, A LOT. (If you know our family, then you know these aren’t typical nose bleeds 😅) so they had no choice but to do both sides. He will need to be tested for some bleeding disorders as well with his next round of labs. Pretty easy recovery, two different sprays for a couple weeks and just watching for any bleeding. We are back home snuggling & getting fluids via his gtube to get him back to baseline and get his color back 🥰

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09/05/2025

There are some people that come into your life and are just meant to be. We are so very blessed to have you in our lives, Ellie girl.

She gets us, she gets our Kash, she prays for us, checks in and most of all loves our kiddos like they were her own. There is never a doubt when they are in her care. When you find someone who you can put the trust of your special needs child in, your heart feels a little more full.

Thank you for the coffee pick me up this morning. It made this tough patch we are going through a little easier today 🤍

09/01/2025

This boy is a fish 😂 he definitely has a love for the water and the way it lets his body move freely without any falls! Happy labor day to all! 💙