Kash Strong - Kashdon’s road through ADEM Recovery

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

Things have been heavy around here lately. There’s a lot I could share and update everyone on, but I just don’t have the...
10/15/2026

Things have been heavy around here lately. There’s a lot I could share and update everyone on, but I just don’t have the mental or emotional capacity to put it all into words right now. So for now, I’m going to keep things simple and ask for prayers as we navigate everything. ❤️

🙏🏼 A few specific prayer requests for our family:

• Prayers for Kashdon’s body to be in as little pain as possible.

• Prayers that the newly added injection, along with his other injection, helps his body and that he experiences minimal side effects.

• BIG prayers that his body can regulate and that we can find a better rhythm with school and transitions. This has been taking a toll on both his physical and emotional well-being, as well as mine.

• Prayers for me as I’ve been dealing with some medical issues of my own lately.

• Prayers for little brother as he navigates some new therapies and appointments.

• Prayers for peace, calm, and regulation over our whole family as we walk through this bumpy season.

We would appreciate the prayers more than you know. Some seasons are just heavier than others, and right now, we could use a little extra love and prayer.

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10/01/2026

Kash had his baclofen pump port accessed today to refill with new medication and we also did an increase. He is starting to understand whats going on and that it’s painful so that made it tough today. Little brother is not a fan of needles and did not like brother being poked 😢 Therapies before that were also a little rough also, he is just so exhausted today. Perk was these two brothers being silly together and laughing in between appointments 🥰

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Kash has been having trouble with the chemotherapy drug he’s on for his juvenile arthritis. He takes it once a week on F...
09/26/2026

Kash has been having trouble with the chemotherapy drug he’s on for his juvenile arthritis. He takes it once a week on Friday evenings and the last two weeks he’s had nausea, vomiting, headaches and his body temp dropping low. We are adding in zofran and Tylenol for this weeks dose starting tonight before we give the chemo and will continue those throughout the weekend.

Prayers for a better weekend and feeling good to celebrate brother’s birthday 🙏🏼

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August updatesMet his new hematologist, lots and lots more blood work and discussion. Some tests came back abnormal poin...
09/08/2026

August updates

Met his new hematologist, lots and lots more blood work and discussion. Some tests came back abnormal pointing to a bleeding disorder so we were referred to U of I for further testing and to see their hematology team. This boy has been poked and tested so much this year.

Eye doctor, pressures were originally high so did two further tests and things checked out okay to not treat for glaucoma at this time. We now also have to watch very closely for inflammation in his eyes (different than pressures) due to his new arthritis diagnosis.

Ended our last day of summer at therapy and the zoo! Thankful for their accessible train, Kash’s current favorite!

Started 4th grade!

Had to stop one of his new meds due to side effects until we get more answers, this has set us back a little with trying to find a plan that will work for his arthritis. Still continuing with the stronger one, and thankful he hasn’t had any bad side effects.

We are reminded to look for the good daily, as hard as it can be 🙏🏼

We celebrate his golden birthday tomorrow! ✨

Kashdon has a brain MRI this morning at the U of I and then an appointment with his neurosurgeon this afternoon. He’s in...
08/05/2026

Kashdon has a brain MRI this morning at the U of I and then an appointment with his neurosurgeon this afternoon. He’s in great spirits! We will update later on

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Planned on updating throughout each week of CITI (intensive therapy w/ the cast), but here we are a month later at the e...
07/24/2026

Planned on updating throughout each week of CITI (intensive therapy w/ the cast), but here we are a month later at the end and also a prayer request. Kash finished the four week program as of yesterday, it was a lot more exhausting mentally and physically than I had prepared myself for but we made it - and the best part, we have seen some amazing results with his right hand!

It’s been a month of a lot of injuries, from getting himself stuck in the cold air return vent in the living room resulting in hurting the area of his pump and having to go in for X-rays and a check to see if his pump was still functioning correctly, a bad fall in the driveway ended up in getting his forehead glued shut and then a bad fall yesterday during his therapy session with a bloody nose and bloody knuckles. Bubble wrap may be in our future 😅

We saw his new rheumatologist a few weeks ago. After 3.5 hours between the appointment, lots of blood work and lots of X-rays, he has been diagnosed with two different kinds of juvenile arthritis. This came at us hard, we knew there was a good chance he would be diagnosed but weren’t prepared for the intensity and how much treatment would be involved. I feel the word arthritis is often dismissed, but when it comes to a child it’s a completely different scenario. Kashdon is in tier two, so we have begun the first treatment med twice daily and the other arrives today. It has taken weeks to get it approved and to us through a specialty pharmacy. He also began a folic acid supplement daily due to the new treatment depleting folic acid.

The new medication that comes today will be given once a week, we are able to do the treatment at home. We are thankful we were finally able to get it approved in liquid form for his tube instead of having to do the injection version of it. It is actually a form of chemotherapy. We could use some prayers for him as he will give the first round tonight. It is known to cause a lot of nausea, we are starting at bedtime hoping he can sleep it off to help. The other side effects that are common are hair loss, mouth sores and headaches. They are also closely monitoring his liver and kidney levels as it can affect those as does his current seizure medication.

We didn’t take the decision lightly, but we feel this is the step needed to give him the best quality of life with pain and further damage to his body.

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Lots of big things happening around here. We saw his orthopedic surgeon to check his hips and everything looked wonderfu...
06/29/2026

Lots of big things happening around here.

We saw his orthopedic surgeon to check his hips and everything looked wonderful 🙌🏼 very thankful for the first appointment in a very long time that didn’t end in another referral, surgery or something else.

Kashdon had his last day of ABA therapy Thursday, after 2.5 years. Lots of tears from this mama and emotions. So so very proud of him and thankful for a place to be his stepping stone, another chapter in his story closed. We are planning to start him back at Albia schools this fall as there have been a lot of things to fall into place, prayers answered.

Omaha trip for neurology checkup and to establish care with his new GI doctor and dietician there. Neurology was great news and GI we just have some adjustments to make with his fluids via his gtube and some things.

Today, Kashdon will begin an intensive therapy at Childserve, CITI, that he was picked for, this is a brand new program they are offering and we are very thankful for the opportunity. He will go three days a week, 1 hour sessions for a total of four weeks. They will be casting his left (his good arm) in order to work intensively on his right arm that he does not use much due to his brain injury. With some intensive home exercises as well. More to come as we progress through it. We are praying for great results and that he tolerates the cast well, it’s going to be tough on him taking away the arm he does almost everything with but as we know he’s so resilient, easy going, and strong!

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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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IA-68
Melrose, IA
52569

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