Kash Strong - Kashdon’s road through ADEM Recovery

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 💪🏼

💙

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 🙏🏼

💙

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.

💙

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.

💙

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.

💙

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 😅

💙

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 💙💪🏼