Cooper’s Crew

06/14/2026

Little update on Cooper.

🧠We are eating, finally! It’s small amounts and they are calorie counting but she’s eating.
🧠She is having decreased seizure activity. So decreased that we are no longer on Neurology’s radar for at least a little while.
🧠We are scheduled as an “add on” for a G-Tube surgery tomorrow. She has been in restraints and hand mittens for about a week. We are ready to give her back her range of motion.

All good things. If we have it our way we will go home this week.

Until next time,
Cooper’s Crew

06/06/2026

Lots has been happening, we are so sorry that there hasn’t been an update. So, here you go.

🧠Cooper has had 2 seizures. One febrile and one tonic clonic. Both over a minute long and always terrifying.
🧠Cooper is out of the PICU. We are now in a regular room.
🧠So far, we are being denied a G-Tube because they say she does not meet the qualifications for it.
🧠Cooper is not eating. We have had Ear, Nose, and Throat come look at her. Her voice box is a little swollen but otherwise, she’s medically okay. We think the tube scared her and she’s just afraid to eat. Just a little bit ago, we tried some baby food. She only ate 3 tablespoons but small victories, right?
🧠Cooper is in withdrawal. Yes, you read that right. The amount of drugs she was on and the disease she has combined together to create a sedation nightmare monster. She is tremoring, vomiting, she has diarrhea, and she’s just miserable.
🧠They say we can’t leave until she eats and until she is completely weaned off meds and withdrawal symptom free.

She’s had a lot of small victories.
She’s awake.
She’s smiling.

She is our super Cooper.

We have a long ways to go still but we will figure it out, one day at a time. We will also do it at her pace, whatever that may be.

Until next time,
Cooper’s Crew

06/01/2026

She is off the vent.

I repeat, SHE IS OFF THE VENT!!

We still have a long ways to go, but it’s a start.

Until next time,
Cooper’s Crew

05/27/2026

Today is a lot like the most recent days but today she woke up. It only for a brief few moments here and there but she’s awake.

We have had some small victories but also some setbacks.

🧠She is awake.
🧠Her a.r.t. line has been taken out so that is one less I.V.. Her blood pressure has also been good and stable.
🧠They are on the way to take the EEG off. So, all the leads on her head will be gone.
🧠Because she is awake, she can feel everything. She is miserable and uncomfortable. She is in pain.

As long as she stays seizure free, Cooper will be taken off the vent sometime tomorrow.

Super Cooper continues to amaze me.

More updates to come.

Until next time,
Cooper’s Crew

05/25/2026

Cooper has officially made it 48 seizure free.

As of last night the cause of the coma is status epilepticus. She went at least 4 hours of constant non-stop seizures. One after the other. She may have brain damage but it has not been confirmed as of today.

They are slowly waking her up. But, depending on if she seizes as she comes out or not she may have to go back into the coma. It’s up to Neurology to decide.

We have learned many things during this hospital stay.

🧠 We found out Cooper has an allergy to lidocaine.
🧠 She has 3 new types of seizures. All of which are small but exhausting as you can imagine.
🧠Her genetic condition of the SCN1a gene came from mom. Mom has the exact same gene and mom, too, has epilepsy, and mom was the carrier.

When she wakes up or there is a major change or update we will let y’all know.

Until next time,
Cooper’s Crew

05/23/2026

It’s really hard for us to post this but after 3 days in the hospital Cooper has been put in a medically induced coma.

The last 3 days have been rough. She has been non-stop seizing and we found out she has 3 new types of seizures to add to her resume.

This poor girl has been through it.

We started this because Cooper was having an increase in seizures. The next day they got worse, and the day after that was even more terrible.

We have come to learn on this visit that she has brain damage from her very first seizure she ever had (This has caused her to be extremely delayed developmentally). We have also found out that she has had a late reaction to her Corpus Callosotomy known as drop foot (It’s where her foot drags, or she walks on the side of it instead of walking like she normally should).

She’s currently intubated, full of tubes, and we have no idea what the plan is from here until tomorrow.

Any prayers or messages whatsoever is welcomed and appreciated. We are really struggling up here.

So, for now, we will keep you posted as we know more.

Until next time,
Cooper’s Crew

05/14/2026

Honestly, I wasn’t going to post this but it brought us so much joy it deserves to be shared.

Cooper has been in Physical Therapy to help her learn how to walk. She is crawling (a little funny but for Cooper, it works) and working on her form every week with Missouri First Steps. Every other week she has been going to Children’s. This past Tuesday we decided to try a gait trainer. We knew Cooper wanted to take off but it was just getting her the right support.

We finally found what we were looking for and Cooper finally took her first steps.

More updates in the morning as we see our Neuro-surgeon.

Enjoy the video of Coopers first steps.

Until next time,
Cooper’s Crew

04/23/2026

04/21/2026

I never thought I would do this, but I need help with Cooper. The expenses are adding up and after all this time off for ER trips, and surgeries we desperately need help.

I’ve had many people ask me how they can help, or what they can do, well this is it. I created an Amazon wishlist; I will also be sharing my Venmo and Cashapp.

Cooper needs size 7 diapers. Any brand is fine, just not Luv’s. We also need milk, and baby food such as ge**er meals, and soft foods like Mac and cheese, crackers, potatoes, etc. These are not on the wishlist, if you are wanting to help get these please use Venmo, cashapp, or message me.

Cooper needs educational books to help her learn to speak. We read to her daily so I’ve added lots of books.

She needs soft, and sensory toys. The girl just had brain surgery so nothing that lights up, some noise like rattling is okay but music is best to be avoided.

She needs summer clothes in 24 months or 2T. We added some to the wishlist but if you have hand me downs we will always take it.

Overall, we really just need help with the basic things. We have the medical equipment and everything we need medically for her just not the everyday needs. The costs have been drastic.

I hate asking for help but please do if you can.
Life got hard fast, and we need our crew.

Feel free to share this post, help if you can, and anything is appreciated.

Check out this Gift List I just created. https://www.amazon.com/registries/gl/guest-view/2STEBD6C7KW8A?ref_=cm_sw_r_apin_ggr-subnav-share_SZV08PCYAZM0VK8P541M&language=en-US

04/17/2026

Today was a long one.

We went to Children’s Mercy - Kansas. We met with Dr. Bansal, her new epileptologist (a fancy word for epilepsy doctor). He did a lot of things today.

We discussed surgery, and how well she has been doing since hers. He is still worried that she is still seizing and wants to do an MRI to make sure that the surgery was completed properly. He also said that her seizures could be caused by her lack of sleep so we made some other decisions.

He changed meds. He took her off of stirpentol and put her on Fintepla. He also took her off of her zonasimide and put her on trazedone to help her sleep.

He tweaked her VNS a little bit. But only on her day time settings because that is when she seizes the most.

Her put her in the druvet clinic for next week. She will see a nutritionist, a pharmacist, and a sleep specialist.

We are finally getting the care she needs and she is slowly progressing after surgery. She stood up on her own and she is slowly starting to eat regularly again.

Cooper is doing the best she can with what life handed her.

Until next time,
Cooper’s Crew