Kash Strong - Kashdon’s road through ADEM Recovery

Kash Strong - Kashdon’s road through ADEM Recovery Updates on our Kashdon and sharing our life with a medically complex child 💙

Recent appointment updates• Lots of dental work over the last month. To say I am extremely proud of this boy is an under...
05/15/2026

Recent appointment updates

• Lots of dental work over the last month. To say I am extremely proud of this boy is an understatement. He is quite literally tougher than anyone I know and did so good that we didn’t have to go under sedation for any of the work over 3 sessions. Due to crowding and his chromosome deletion with a high pallet we decided to have two teeth pulled to make more room. He also had a lot of work done on other areas.

• We heard back from endocrinology from his testing he had at U of I last month. He failed the growth hormone portion of the testing so he will have a brain MRI to check on some things. He is also eligible to start hormone replacement therapy but we are planning to wait on that for now and see what the MRI shows.

• Had his port accessed to refill his medication, didn’t even flinch. Once again, so dang tough. We did another increase since his body is handling it well. We talked through some things that seem to be a puzzle. We have a plan for now and will also see what orthopedics say about his hips and what we hear from his upcoming rheumatology appointment.

• Had an appointment with respiratory med in Omaha, we had a couple things that he may need to start soon but doc let us wait until next follow up since he’s right on the fence for needing more intervention. Yet another referral, he will be starting feeding therapy again to help with his swallowing.

• Post op follow up with urology - everything on the side that he had surgery on looks great, a little trouble with the other side but we just have to keep an eye on it and follow up in one year.

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Checked in and all hooked up. Kashdon will be undergoing a Arginine Clonidine Tolerance Test. He will be given two diff...
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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Therapies today and then we had an appointment with Dr.B for his pump, we adjusted and went up which we haven’t been abl...
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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Echocardiogram early this morning and then we headed to therapies. The best was Kash kissing himself in the mirror/one w...
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 😂💙

Update: surgery went as planned, he has internal and external stitches. He’s still in recovery but will be back to us so...
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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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 whi...
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 🙏🏼

Some days, in this case weeks, seem to be like trying to solve a puzzle. We are experiencing a lot of dysregulation in K...
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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March is CP awareness month! One of Kashdon’s many diagnoses 💚 We have really been struggling with a lot recently to be ...
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.

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Melrose, IA
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