This is our youngest warrior princess, Denver. Denver is named after my hero and favorite person, who passed too soon to meet my babies- my grandfather Denney. Denney was a friend to everyone, he was kindhearted and loved to share his love with everyone. Denver is just like him. At 13 months old, Denver loves to be loved and give love. She gives kisses to anyone that will let her. Her smile is infectious, and her love of her older sister is something to be admired. At 8 months old, Denver experienced her first seizure. I can confidently say, if I wasn’t already a mother to a child with complex epilepsy, I never would have realized that’s what happened. The girls and I were playing in their room before bed while their Dad got Nova’s meds ready. We were playing with a wooden Noah’s ark set, and Nova was learning how to say zebra. Denver thought the “z” sound was so funny, so over and over again Nova and I were, with heavy emphasis on the “zzzz”. saying zebra. We were all three a fit of giggles. I started noticing Denver was leaning forward repeatedly in kind of a short, jerking way. I tried to brush it off as just paranoia. I didn’t think it could really be happening. But then, it became more obvious to me what was happening. Denver started to fall forward repeatedly with her head completely touching the floor. She started to whine and fuss, it was obvious this was out of her control. It slowed down and eventually stopped after about 10 minutes total. While this was completely unexpected and shocking, despite the anxiety, I was so thankful for my previous seizure experience with Nova. A 10-minute atonic cluster is a much gentler way to be introduced to your child having epilepsy than a status seizure. We immediately consulted with Nova’s neurologist, who thankfully took on Denver as a patient. After a few more drop seizure clusters, a status seizure and genetic testing, Denver was diagnosed with Dravet Syndrome at 10 months old. Today, Denver’s head drop/atonic seizures have slowed down significantly but still happen a couple times a week. She is currently having tonic-clonics about every 2 weeks and they turn status often. She is currently just taking clobazam, but we are working on getting her started on epidiolex as well. I am looking forward to sharing Denver’s journey with you.
