Cooper’s Crew

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Cooper’s Crew Cooper is a brave and joyful girl living with Dravet Syndrome, a rare form of epilepsy.

We’ve been trying to figure out how to say this. But, we did in fact learn a lot on this trip to the hospital. 🧠Cooper h...
09/27/2026

We’ve been trying to figure out how to say this. But, we did in fact learn a lot on this trip to the hospital.

🧠Cooper has serious brain damage from the first two seizures she had. Both were over an hour long and just horrible experiences. This is honestly no big shock. It just sucks to really be true.
🧠Cooper has mild to moderate encephalopathy from Dravet Syndrome as a whole and from her two brain surgeries.
🧠Cooper is not seizing, she’s twitching. It’s a side effect of many things, but it’s a new symptom of her Dravet that we never anticipated. It’s going to show in several more ways; so, we have that to look forward to.

This was all overwhelming, but really just the most insightful.

It was necessary to go. It was the first hospital that was truly honest with us.

We need to do more research as to what future symptoms Dravet has in store for us, but it’s a start.

Until next time,
Cooper’s Crew

We made it to Texas. She has been admitted into a children’s hospital in Houston.So far, they are not sure if what Coope...
09/24/2026

We made it to Texas.
She has been admitted into a children’s hospital in Houston.

So far, they are not sure if what Cooper is experiencing is seizures so they are starting to prepare for other avenues. They say with some of the other side effects that have occurred it may be her heart.

We just want some answers.

Until next time,
Cooper’s Crew

We are home.She surpassed all the odds and is so far moving all four extremities. She shocked the surgeons. Until next t...
09/21/2026

We are home.
She surpassed all the odds and is so far moving all four extremities.
She shocked the surgeons.

Until next time,
Cooper’s Crew

09/18/2026

Cooper is out of surgery.

The hard part is not over. It all depends on how she wakes up. She may lose her ability to walk completely and her ability to speak.

Prayers are needed and appreciated.

We will update again once we see her in her room and get situated.

09/18/2026

They are closing the incision now, all is well.

09/18/2026

Cooper is doing great.
Her labs look good.
Doctor is working away.

:)

09/18/2026

Surgery has officially started. She is doing great.

She’s back in surgery. Otherwise, no updates. Will check back in when I know more.
09/18/2026

She’s back in surgery.

Otherwise, no updates. Will check back in when I know more.

Brain surgery tomorrow folks.First thing in the morning.The side effects of the surgery are very scary, and we are reall...
09/17/2026

Brain surgery tomorrow folks.
First thing in the morning.

The side effects of the surgery are very scary, and we are really nervous but Cooper tends to defeat all the odds.

If you have questions, please feel free to reach out. But, prayers and some support are what is needed most right now.

Also, some good news, she slept through the night for the first time in months.

Until next time,
Cooper’s Crew

The epilepsy team finally came. That was a lot but it is necessary. They are increasing her topamax. They are increasing...
09/16/2026

The epilepsy team finally came. That was a lot but it is necessary.

They are increasing her topamax.
They are increasing trazedone.
They are increasing fintepla.
They are starting ketamine.

They are also getting ahold of her neurosurgeon and finding out if we can bump her surgery up the line.

They are taking a look at her VNS settings to see if there is anything they can tweak there.

Overall though, after these steps they have officially told us we are out of options. They have no answers left for us and we have officially decided to seek a second opinion once the surgery has occurred.

This is getting really hard. We need help.

Until next time,
Cooper’s Crew

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2502 Cherry St
Kansas City, MO
64108

Telephone

+16602273748

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