07/15/2026

Hey! As always, life has been keeping us on our toes and throwing us more curveballs than we ever expect.

Cami had surgery on June 24. During that surgery, she had the screws in her hips replaced, ear tubes placed, her adenoids removed, and an ABR hearing test to evaluate her hearing. What was supposed to be a fairly routine recovery turned into a four-day hospital stay because she needed oxygen support much longer than anticipated. Thankfully, she's doing great now, and last week orthopedics officially cleared her to get back to all of her normal activities. Seeing her smile and move around again has been such a relief.

The next challenge came almost immediately after surgery.

Cami was recently diagnosed with epilepsy. The difficult part is that she isn't actively having seizures. Her EEG showed abnormal electrical activity while she's sleeping, which means she's at a much higher risk of having a seizure in her sleep. In her entire life, she's only had two seizures, and one of those was a febrile seizure, so this diagnosis has been incredibly difficult for me to process.

I struggled with the decision to start an anti-seizure medication. The thought of giving her a medication with so many potential side effects when she wasn't even having seizures weighed heavily on me. I talked with two different neurologists, hoping someone would tell me there was another option. Instead, they both gave essentially the same recommendation—that the risks of not treating her outweighed the risks of the medication.

So, we trusted them. We started the medication.

Those two days changed me.

About an hour after her very first dose, my happy, giggly little girl disappeared. She had been laughing, giving hugs and kisses, and just being Cami. Then, almost like someone flipped a switch, she became completely vacant. She stared off into space with her mouth hanging open, drooling, and then fell into the deepest sleep I've ever seen. For five to six hours, I couldn't wake her up. I called her name, moved her, tried everything I could think of, and nothing.

I even loaded her into the car and drove to work with the music turned up as loud as I could, hoping something—anything—would wake her up. She never stirred. Not once.

I was terrified.

I checked her oxygen over and over again. It stayed around 97%. Her breathing was normal. Every number told me she was okay, but every instinct as her mom told me something was terribly wrong. I sat there watching her, wondering if I should rush her to the emergency room, praying she'd wake up and wondering if I'd made the biggest mistake of my life by giving her that medication.

When she finally opened her eyes, she cried for hours. There was no smile. No giggles. No hugs. It was like the light had been taken out of her.

We gave the second dose that evening because I wanted to believe maybe it was just her body adjusting. She slept through the night, but the next morning she woke up crying—a cry that just wasn't her. We gave the morning dose, and once again she slipped into that same deep, unresponsive sleep.

That afternoon at therapy was heartbreaking. It took me and two therapists just to hold her in a standing position because it was as if her legs had completely given out. She couldn't do the things she had been doing just days before. She wasn't interacting. She wasn't laughing. She wasn't herself.

When we got home from therapy, she laid in the exact same spot on the floor for hours. She didn't roll around. She didn't stand on her head. She didn't crawl around. She didn't do any of the quirky little "Cami things" that fill our home with life. She simply laid there. If you know Cami, you know that isn't her. She is constantly moving, constantly finding ways to make us laugh with her silliness. Watching her lie there so still was absolutely heartbreaking.

That was the moment I knew I couldn't give her another dose.

I understand why these medications exist. I understand the fear of seizures. But watching your child lose every part of the personality that makes them them—even temporarily—is something I wouldn't wish on anyone. It felt like I had my daughter physically in front of me, but the little girl I know and love had disappeared.

Thankfully, once we stopped the medication, she gradually came back. Her smiles returned. The hugs came back. The laughter came back. She started rolling around again, standing on her head, and doing all the wonderfully goofy things that make Cami who she is. It felt like watching the sun come out after an incredibly dark storm.

Since then, I've been going back and forth with the neurology team at Texas Children's while we wait for our epilepsy clinic appointment in October. We still haven't found a medication that I feel comfortable trying after what we experienced.

Right now, we're living in a place that is both emotionally exhausting and incredibly difficult. We know her EEG isn't normal, and we know there is a real risk of seizures. But we also know firsthand what that first medication took away from her, even if only for two days. As her parents, we're trying to find the balance between protecting her brain and protecting the little girl who has fought so hard to become the happy, loving, resilient child she is today.

We're hopeful that the epilepsy specialists will help us find a better path forward. Until then, we're taking things one day at a time, celebrating every laugh, every hug, every milestone, and every ordinary moment that reminds us just how precious she is.