Tuesday night in our chaos from returning home from our vacation turned hospital stay, Brian and I both forgot to give Eloise her anti-seizure medication.
The next morning, as we both realized it, we held our breath and hoped it wouldn’t have any consequences. But, sadly, 12 hours later Eloise had the worst seizure we’ve seen since she was hospitalized in January — one of those ones that shake your entire body that you see in the movies. Not something that’s normal for Eloise.
Thankfully, we knew what to do and stopped it with rescue medication quickly. But the poor thing immediately went to sleep, which is another way we know how hard it is on her little brain.
Brian and I both could feel our moods shift, full of worry. When bad seizures happen you can’t help but think about the worst case scenarios. We already know because Eloise is missing a copy of SCN1A the gene associated with Dravet syndrome ) that she has a 15-30% chance of dying before she hits age 14. So we know a bad seizure could hit at any time, regardless of how much it seems her medicine is helping.
So we both went to bed with somber moods, wondering if Eloise would return to herself the next day.
Lucky for us, she woke up like normal at 2:30 this morning, singing, happy, and asking for a middle of the night snack. I’ve never been so happy to lose sleep.
It felt a little surreal today as I watched her and realized you’d never know that just last night we were close to going right back to the hospital.
Which has me feeling a bit of awe — there are modern medicines that, even if they will never give us complete seizure freedom, they at least currently enable us to have many happy days with this adorable kid.
We are so lucky she was born in this day and age.
Hug your loved ones.
Eloise The Tiny Fighter 
She is so precious. Thank you for sharing.
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