Kash Strong - Kashdon’s road through ADEM Recovery

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! 💙

08/28/2025

Iowa city follow up from Tuesday -

We started with more X-rays and then met with Orthopedics. To summarize, they explained that they do not want to move forward with the procedure that the Iowa clinic recommended but rather another type of surgery. We are looking at a Selective Dorsal Rhizotomy. This procedure would be performed by a neurosurgeon at the U of I. They would go into his spine and then use a laser to burn the ends of the nerves in which are causing the spacticity in his lower extremities. Recovery is not going to be easy if we go this route but we feel it is worth looking into. If we move forward, after being released from his hospital stay he would then move to inpatient at Childserve where he would receive intensive therapies 5 out of 7 days a week while he re-learns how to walk again.

The first steps are a muscle evaluation with a PT and a brain MRI. We will then meet with a team at the multi disciplinary spasticity clinic and go over everything to make a decision and plan together.

After we get everything done he will then be in a new set of braces in a new style to help place pressure on the front of the shin/knee to help with walking and posture.

We will follow back up with Omaha PMR about the baclofen pump for his right hand as the Rhizotomy can only target lower extremites not upper.

We are feeling a lot of different emotions with this but are following God and taking it one step at a time as we make a decision 🙏🏼

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08/23/2025

A lot to catch up on again, long post. Starting with the good news, the EEG results finally came back and the episodes were not another seizure type but another kind of tics 🙌🏼 Also had an eye appointment this week and pressures are stable with no increase, which is huge since they were slightly increased at his last check up.

Last week we were in Omaha for appointments. We first met with a new Physical Medicine & Rehab doctor to address Kashdon’s high tone in his right side. This is the fourth doctor we’ve been sent to for this and to try and find him relief. Dr. Nimo was wonderful, she took her time with us and we went over all of our options. In short, we have already tried the recommended course: bracing, Botox injections & 3 out of 4 meds to help. We ruled out a surgery on the hand specifically between the trial we’ve already done at Shriners and the outcome being not favorable for him. So that left us with discussing a surgery to place a baclofen pump. This would place a port into his abdomen and a catheter into his spine, the pump then releases the baclofen straight to the source of where it needs to be throughout each day and then can also have a bolus added for heightened times of the day. It is very personalized and can be adjusted in clinic as need with a wand. The biggest concern is that this would effect his left side “too much” but best scenario would be that is only helps the right side. It is not possible to just target one side of the body. We asked for time to make a decision as we go see another ortho surgeon for the leg surgery this coming Tuesday. Dr. Nimo is also going to consult with Kash’s physiatrist to see her thoughts. If we do want to proceed, we would do a “trial” lumbar puncture procedure first before committing fully to surgery.

We were also given the official diagnosis of Cerebral Palsy. This came with a lot of emotion as I look at all the hard work this boy has put into therapy the last 5.5 years and continues to each day. Hearing that his muscles are deteriorating and will continue to weaken over time with no real cure was a hard pill to swallow. With that she put in an order for a wheelchair to use as needed. She also referred him to Endocrinology at the U of I for some testing.

We then met with Developmental Peds for a med check, that was good news as all is going well and working as expected but in true fashion we didn’t leave without another referral here also.. referred to Blank for a full hearing test next month due to showing some signs that concerned the doctor.

One day at a time. If you would like to pray for our boy we would appreciate the prayers very much. Prayers for comfort, guidance, strength and just quality of life to be the best it can possibly be.

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07/21/2025

Kash was here 🥰

07/09/2025

The last couple months have been a bit overwhelming here. Kash is currently hooked up to an in home EEG to try and capture the episodes he’s been having that are concerning to be a new type of seizure. We are very grateful to be able to do this round at home, he will be hooked up for approx 48 hours and has to be in one room for the majority of the time. He’s spending a lot of it right here playing rodeo so far and watching some movies.

He also was referred to a podiatrist for his foot pain and the news we received was a bit of a shock. He needs to have a pretty major surgery but due to the complexity and how out of alignment he is on xray they weren’t comfortable doing it through the Iowa clinic so he was referred from there to U of I. We are still awaiting a call to see if they will except him. If not, next step is a referral to MN.

We are still battling a lot of aggression. If these episodes are seizures it would answer a lot of this for us but if not we will keep searching for how to help him. His ABA gals have been great and did a home visit to observe as well. We will follow up after the EEG results are in and go from there.

Prayers for peace, answers and guidance for us all are appreciated 🙏🏼

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06/05/2025

Neuro checkup in Omaha today with one of our favorites, Dr.Wright.

We earned another referral to another new specialist for his right arm and hand but thankful that she was able to get us connected and hopeful it’s the answers he needs. He was also fitted for a new brace for “righty” at OT this week.

Seizures are under control for right now 🙌🏼 We have to send in some videos for some of the tics/behaviors we’ve been seeing and will go from there with those.

Dr.Wright was very impressed with his overall progress since last time she saw him, she stated that ABA therapy must be helping tremendously based on the way he interacted with her compared to last appt. This was great to hear ❤️

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05/13/2025

Landed a trip to the Pella ED yesterday afternoon. Kash’s gtube popped and fell out at ABA. His therapists called quickly and took great care of him and cleaned and covered his site while I was on my way. This was not easy for them as he was in a lot of pain - bless their hearts, they are truly so great.

Panic set in on my way as a I realized I didn’t have an extra tube kit with me, after a call to the surgeons office at blank they told us to head to the ED as his site was starting to close up already, we were in crunch time before he would have to have it dilated (this is no fun as we know from previous experience)

We arrived at pella ED, they were quick, kind and wonderful. It took a team of 5 of us as they inserted a catheter into his stoma site, they didn’t have any tube kits on hand. It took three really good pushes for the doc to get it in but we did it. We were able to leave with the catheter in place and then once we made it home we removed the catheter and placed a new tube. Thank you Cali for always being a text or call away and for your help at home holding Kash so we were able to place it at home!

He’s a bit sore, to be expected. But such a dang trooper!

It takes a village.

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