Kash Strong - Kashdon’s road through ADEM Recovery

04/16/2026

Checked in and all hooked up. Kashdon will be undergoing a Arginine Clonidine Tolerance Test. He will be given two different medications via IV to stimulate growth hormone release. And they will continually be drawing labs every 15 minutes to check levels throughout, it is expected to take 3-4 hours. We are praying for no side effects from the medication and calm over him as he has to continue fasting and stay in bed. Hoping we can catch a nap 😉

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04/16/2026

Therapies today and then we had an appointment with Dr.B for his pump, we adjusted and went up which we haven’t been able to do since his recent surgery a month ago as well as waiting on tests for his O2 levels. We decided to do a split schedule where he will stay at the same dose he’s been on overnight and increased to the new dose from 6am-8pm. He was also referred to a Rheumatologist today, for discussion of possible juvenile arthritis. Another hard pill to swallow but we will see what they have to say and pray for answers. Tomorrow we head up bright and early for a 4 hour test at the U of I for endocrinology 🙏🏼

New foot braces, hand brace and helmet the last few weeks. I just love his smile and loving, positive personality, he keeps us going. And that cheesy smile will never get old 😁

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04/08/2026

Echocardiogram early this morning and then we headed to therapies. The best was Kash kissing himself in the mirror/one way window 😍😂

03/25/2026

Chattering away on our drive to therapy this morning. My fav is when he busted me recording and gave a cheesy smile 😂💙

03/16/2026

Update: surgery went as planned, he has internal and external stitches. He’s still in recovery but will be back to us soon. He has restrictions yet again for 4 weeks. We have been in contact with his neurosurgeon here at the U of I and they ordered X-rays and an appt concerning his pump, so after we are released from post op we will be headed that way.

Kashdons surgery got bumped to today so we headed up last night. He’s all checked in and waiting in preop to go back. They will be performing a orchiopexy. We will update as the day goes on. He’s one tough dude 💪🏼

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03/13/2026

We made it to Friday. This week has been a tough one. Oaks is on spring break and Stetson’s sitter is gone this week which meant all three of them with to everything this week. We made it through eight appointments and lots of car time. These kids really are troopers, our life isn’t the normal and they roll with it. Oaklie spent her spring break in the car and at appointments..
We’ve also been struggling since last Thursday evening with Kashdon’s stats and his pulmonologist/sleep doctor is having us move forward with an echocardiogram, 24 hour oximetry monitor test (instead of just nighttime) and a chest xray. And then his swallow study is next week. Praying that with all of this we can find an answer and help us all get some sleep and reassurance that he’s okay. He was also casted for new braces this week and met with Dr.B for his pump again - she has reached out to his neurosurgeon at U of I due to some things he’s been experiencing the last week with his tone and we are waiting to see if we have to go for testing to make sure it’s working properly.

He has an upcoming surgery on April 2nd with urology. Praying we as a family can find some time to thrive and not JUST survive 🙏🏼

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03/06/2026

Kash had a much better day today but we are now dealing with it on the medical side - low stats and seizure like symptoms. Jarrod and I just hooked him up to oxygen along with his nightly cpap to get his stats more stable. We can feel the prayers, thank you all. Praying we can stay here at home and not have to go in 🙏🏼

03/05/2026

Some days, in this case weeks, seem to be like trying to solve a puzzle. We are experiencing a lot of dysregulation in Kashdon and extreme behaviors. I won’t go into detail but please pray for him. Pray for us. The toll it takes on us all is beyond hard. Pray for peace, regulation, answers, calm and clarity. We need them.

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03/02/2026

March is CP awareness month! One of Kashdon’s many diagnoses 💚

We have really been struggling with a lot recently to be quite honest, but this boy is worth it and we will never stop fighting for and with him.

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