Super Colt's Fight Against Epilepsy

02/03/2026

C**t had a pretty yucky night with seizures. 😞 He’s all tucked into my bed, resting for now. Hopefully he starts perking up soon, and doesn’t have to deal with any seizures today.

01/31/2026

When I get this pic in a text… looks like someone finally agreed to a haircut!! I can’t wait to see it when they are done! 😁

01/30/2026

Last night C**t went and got the box of brownie mix out of our cupboard… read the back of the box… got each ingredient out… correctly read and measured the measurements of each ingredient… put them all in the bowl (even successfully cracked both eggs, without getting any shells in the bowl), then mixed it together perfectly. I just stood there in amazement at how well he did.
C**t has dealt with major regression (physically, behavioraly and cognitively) due to years of uncontrolled seizures… resultng in frontal lobe brain damage… this has caused him to be stuck at a much younger level… but seeing him grow and learn how to do some things independently is such an encouraging experience… last night was a great reminder that there is still so much development to look forward to in C**t’s future… he might be taking a different route, and won’t be able to do all of the same things as others his age, but he WILL be able to do so many things, just at his own pace and in his own time. Go get em C**ty! ❤️

01/29/2026

C**t has been touch and go with how he’s been feeling lately. Yesterday he stayed home from school to rest, and today he just went for the morning. He was really sick about a week and a half ago, whatever the illness is, just keeps lingering… he’ll feel good one day, and then feels yucky the next.
This afternoon we went to Mercy to get C**t’s port flushed. Hopefully this is the last time he will need to have it accessed before he get his new port in a couple of weeks. He got to see his number 1 all time favorite nurse, “Blonde hair Maddie.” She’s taken care of him for almost 10 years… we joked that at some point, he’ll have to change her name to “Gray hair Maddie.” 😆 C**t wasn’t thrilled about getting the port accessed, so a little bribery was needed… he had a wish from”Little Wishes” that was going to be given to him after his upcoming surgery, but Rebecca (CLS) went ahead and gave him part of it today. He was so excited to get some plain Lego minifigures that he can use when creating new characters. He got right to work with them as soon as we got home. ❤️

01/24/2026

I’ve never read something so accurate in my life… I had a similar response as below when asked why I wasn’t hitting the “call” button each time C**t was seizing in the hospital… he literally has seizures at home all. the. time…. I’ve cared for him during over 1000 SEIZURES, I am more experienced in caring for C**t while seizing than anyone else… his neurologist literally put it in writing that Tyler and I are the EXPERTS with C**t’s seizures. I usually do not need nursing assistance for a single seizure, but if I do… believe me I won’t hesitate to call. Sorry just a little rant. 😉

Medically complex parenting is not the same as healthcare providing as a profession.

That’s one of the many reasons why we hate being in the hospital, because we aren’t always listened to and we can’t always do things our way.

The way that we know works.

We don’t make comparisons to text book cases, we make comparisons to our child’s baseline.

In a hospital, there are protocols.
Policies.
Liability.
Checklists.

At home, there is lived experience.
Pattern recognition.
Instinct.

At home there is a parent who knows what a subtle color change means.

Who can hear the difference between “normal” and “not okay” breathing.

Who has kept a child alive without a call button.

So yes, sometimes we do things differently.
We don’t follow a text book.
We follow our child.

Sometimes we make calls that don’t fit anywhere other than our own lives.

Not because we don’t respect medicine.

But because medical policy doesn’t always respect our children.

Medically complex parenting isn’t done recklessly.
It’s responsive.
It’s informed.
It’s survival.

And if you’ve never had to be the backup plan, the advocate, the alarm system, and the comfort all at once…

You might not understand.

But we do.

Written by: Carla Moore from Payton's Path

01/24/2026

I have been home with C**ty for almost a decade now… I recently took my very favorite hobby (thrifting), and turned it into a way to make some extra money for our family… it kind of blew up, so I created my own online shop to easier manage everything. Feel free to check it out, and if you like easy shopping, give me a follow. 😃

I am a married mom of 5… former kindergarten teacher… turned full-time caregiver to my special needs son… now living in my thrifting/reselling era. Check out my shop, new inventory is always being added. Happy shopping! 🛍️ 🩷

01/22/2026

This week I had the honor of speaking to Childserve staff that has been taking classes for the past year on “Trauma Informed Care.” TIC recognizes the pervasive nature of trauma and aims to provide environments that support healing while actively resisting re-traumatization. This is huge for medical families that have dealt with something traumatic… or like our family that has dealt with layers of medical trauma that span almost a decade. I was asked last year, and then went in several months ago to meet with a small group from Childserve, share more about our story and then help them plan for me to come back several months later and speak to the group live. This portion that I am sharing was not a recording of the entire time I was talking… this was me telling a little bit about our journey. Keep in mind we have almost 10 years of medical ups and downs, so I was trying to condense it down into about 40 minutes. They did have a Q&A session afterwards that was not recorded, but I did have more info that I shared, and some things that I elaborated on…staff had some wonderful questions, and gave me such supportive feedback. One thing that I did realize as I was driving home was that I said, “1 in 20 will have a seizure in their lifetime, it’s actually 1 in 12…not sure why I said that…it bugs me because I stated the wrong fact, AND I do know the correct statistic on that one… so when you hear me say it in the video, just know it’s 1 in 12.🤦🏻‍♀️ 😃 Enjoy!

01/22/2026

Update… C**t is still sick, but seizures are actually ok, so we haven’t needed to go into the hospital… buuuuut 4/5 of my kids are down and out with the exact same illness as C**t, so it kind of feels like a mini hospital in my home right now.🤒 🤧 😷 😭 We are drinking lots of fluids, sanitizing everything and just trying to stay afloat as we deal with this yucky virus.

01/20/2026

Long day today… C**t has been very lethargic all day… he stays awake for short periods of time, and then crashes mid sentence… still has a fever even with Tylenol, has had a few seizures, but not enough to go in for rescue meds yet. Tonight he was laying next to me and said, “Mama, if I’m still sick tomorrow, can you take me to get some medical attention?” He’s too sweet, and yes if he is this lethargic, and still has a fever we will be going in to see a doctor first thing tomorrow morning. poor buddy.
Tyler stayed with C**t this afternoon so I could go speak about trauma informed care at Childserve. I think it went really well, and after I was finished, I felt so supported and had so many people telling me how much they appreciated hearing my perspective of what it’s like as a parent going through medical trauma. They did a Q&A session with me at the end, and the staff had some really great questions… they REALLY want to be supportive to the families that bring their children to Childserve, which makes my heart so happy. 😊 Multiple people said they would love to hear more of C**t’s story… It’s not easy to talk in front of a large group of people, retelling a traumatic story that has been a never ending rollercoaster for the last decade of my life… it’s really hard to somewhat relive the trauma as you’re trying to re-tell the story… but for me it was 100% necessary that I figure out a way to work through any difficulties that I have when talking about our trauma, because in the end there were so many people listening, wanting to know my perspective, wanting to be supportive to other families dealing with trauma… I did my best, and was determined not to let them down. I think I did ok. 🤷🏻‍♀️😃 I told them I’d be happy to come back anytime, and was already asked to come speak to their next group that’s going through the training in 2026. ❤️
*They did record a portion of me telling C**t’s story, before the Q&A. As soon as they send it to me, I’ll share on his page for anyone that would like to listen.

01/19/2026

Change of plans for C**ty… no surgery today. He started having a fever overnight. This morning he’s a pretty sick guy, fever has continued along with headache, and some pretty intense seizures. 😞 If the seizures continue, we’ll take him in to get admitted for rescue meds. Hopefully he gets over this illness quickly, and starts feeling better soon.

01/18/2026

Ok one more memory… this was about 8 weeks into C**t’s Epilepsy journey (C was 3 years old) … we were moved to multiple hospitals as doctors tried desperately to control C**t’s seizures. We were inpatient at Mayo in Rochester, MN for about 3.5 weeks. My mom came and stayed a couple nights with us… C**t was on so many meds that he would literally stay wide awake for over 24 hours… sleep for a couple of hours, and then be wide awake again for 24 hours… it was brutal to say the least… any way, Nana had no problem sleeping (and snoring) while we partied all night long… just watch the video. 😂

01/18/2026

This picture was on my FB memories today… 6 years ago, so stinkin cute!! 🥰