Kash Strong - Kashdon’s road through ADEM Recovery

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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05/02/2025

💙 sending love to all our fellow caregivers

To the moms, dads, grandparents, guardians, siblings, therapists, physicians, teachers and everyone who supports a child with special healthcare needs – you are seen, valued and celebrated at ChildServe, especially during ! 🫶

When it comes to supporting the mental health of caregivers, even the smallest gift of time or support can go a long way. Check out the 16 ways ChildServe’s Family Advisory Council suggests to help a parent or caregiver of a child with special needs. https://bit.ly/16WaysToHelpCaregivers.

03/26/2025

💜💜💜

03/20/2025

“Don’t take the little things for granted” has so much power behind it and can apply during so many seasons of life.

This week it’s been this for us, Oaklie letting Kash in and letting her guard down to let him show his love to her. Kash battles a lot of aggression and has since Oaklie came into the world so it’s taken a lot for her to gain his trust. My Mama heart was exploding 🥹

03/10/2025

Sharing to ask for prayers over our Kash man 🙏🏼

Long story shortened - Kash had Covid, starting two weeks ago. He’s had a terrible time kicking it with his auto immune disorder and all that has body has going. We were in the ER last Monday and then again last night. He now has pneumonia and highly possible sepsis. His gtube is the only thing that’s kept us home so far. He hasn’t ate but a couple bites in 2 weeks so we are fully relying on his tube for meds, fluids and nutrition currently. His stats were scary last night and we are now doing breathing treatments at home, an antibiotic and steroid. Currently waiting to hear back from his pediatrician on what our next step is. Blank was full and didn’t have any beds available last night so also sending up a prayer for all of those kiddos there.

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02/14/2025

Look at this sweet valentine who came running to bring mama a rose when I picked him up!! 😍🥹
Heart melted.

Thank you Developmental Wellness!

02/09/2025

Now that we’ve had a little time to digest everything - Oaklie had testing at the U of I on Thursday. We came home with some new diagnoses. It’s hard to explain the feeling of having a strong feeling that you already know what to expect but once it’s real and official it’s still a flood of emotions.

Oaklie was diagnosed with three, yes three different anxiety disorders as well as ADHD. She has already been on a great path with OT and a mental health therapist for over a year and we will now add a child physiatrist at U of I to her team.

We share to raise awareness. In her case a big awareness of how well children, especially girls can “mask” and some wouldn’t even know at all what she struggles with when not in public. These kids need advocating too, they are battling so much inside their little bodies.

We won’t be sharing all details of her journey as it is personal and we want to protect her space for her where needed. But where we can share to help others we will 🤍

With 2/3 kids with multiple diagnoses now, there’s a lot as a parent that goes through your mind. That’s when we turn to God and give it to him 🙏🏼

02/05/2025

What it looks like having children with sensory difficulties. Kashdon sometimes with brushing teeth & our Oaklie has a hyper sensitivity to having her hair brushed and brushing her teeth. This is about the sixth different toothpaste we’ve tried lately and same with toothbrushes. Yes, even baby tooth brushes are getting tried out. Yes, even though I had to go against my preference of clean products on the toothpaste. I did find this clean kids mouthwash that we are trying for the first time though!

🙏🏼 one of these works and last more than a week before it wears off this time. Also bought yet another hair comb in hopes of it helping also.

Even the little everyday things can be the biggest battle, not just her not “liking” it, complete meltdowns running away and refusing. I pray for peace over their bodies daily. I can’t imagine what it must feel like.

If you are another mama dealing with sensory difficulties I am here with you. You are not alone even though it feels like the simplest thing being over looked. I see you doing the research constantly and trying to find a system that works 🫶🏼