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Taking a Moment

Updated: Aug 2, 2023

This blog will be short. I just wanted to take a moment to update you all on Curly-girl's health and allow myself to feel all the emotions that come with January 19th.


Today marks one year since our daughter, Curly-girl, had a severe tonic-clonic seizure. I wrote about "the event" after it happened, and if you'd like, you can read that post here, but I thought I'd share a little bit about how Curly-girl is doing one year later!


To our knowledge, Curly-girl has not had a single seizure since January 19th, 2022. Cue the tears. I struggle to find the words to show the depth of my relief and gratitude. Three hundred and sixty-five days have passed. We've walked through each day since with hope but also a lot of worry. The first three months after Curly-girl's seizure, she slept in our bedroom. When the pediatric neurologist told us at our first follow-up that that wasn't necessary, I looked at the doctor like she was crazy. (Curly-girl's seizure happened not long after falling asleep, so I worry doubly at night as if history will repeat itself.)


At some point, we moved her back to her bedroom and purchased a video baby monitor. Ironically, it's nicer than the audio monitor we had for her when she was an infant, and its bright light makes it impossible for me to sleep well at night. I'm unsure how I'll ever sleep without being able to check on her at a moment's notice. But someday, she will move out of our house and live independently, and my mind can't wrap itself around that eventuality. Who will watch and make sure that she's okay?


There have been so many milestones since her seizure. Moving her back into her bedroom was one, then her first cold (since Covid possibly caused the first seizure, every virus made us nervous), traveling across the country, going on an international cruise, and so much more...


Between March and April, Curly-girl began to have very dark thoughts and fears about hurting herself or others. Our sweet princess couldn't stop obsessing over her very scary thoughts. We reached out to the neurologist, and they changed her medication, but it took over a month to make the transition. All the while, we wondered if the different medications would keep potential seizures at bay and whether or not they would make her dark thoughts worse or better.


We were referred to a neuropsychologist during that time, and Curly-girl underwent a thorough evaluation. Her autism diagnosis was increased to level three, and she was newly diagnosed with Obsessive Compulsive Disorder and ADHD. Thankfully, the new medicine has kept the seizures at bay and has improved her mood significantly. She's back to being our happy-go-lucky, sassy sweetheart. It was absolutely astounding to see the difference the medicine made on her psychological well-being.


While I'm celebrating Curly-girl's current good health and the mile marker that today brings, I'm simultaneously still living in the post-seizure trauma. Still worried that at any second, it could happen again, and so I have a big ask... would you pray for our family? Would you pray for another year of Curly-girl's improved health and no seizures? For her physical and emotional growth and strength and confidence? We are so grateful for all the friends and family members that wrapped us in their love and grace over the last year.


Here's to another year of blessings and miracles! If there is any way that I can be praying for you, please let me know. My heart is with you.


Love,


Stephanie


Momma & Curly-girl in Honduras 12/2022

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