This is our first warrior princess, Nova. Nova’s name means bright star, and that is just what she is. Her middle name is named after my closest cousin, and she radiates her energy every day. Strong, confident, sure of herself and so fun to be around. Nova is a light in this world that cannot be dimmed. At just 2.5 Nova has a stronger love for Jesus than some adults. She loves to pray and sing his praises. Nova’s journey with Dravet Syndrome began at just 6 months old. Nova and I both had had a long night, she couldn’t sleep and was so upset. She had an ear infection, and at the time, I believed letting the fever break naturally was the best thing I could do. In the early morning, I decided her and I desperately needed sleep, so I laid down with her in our bed. Not too long later, I woke up to Nova letting out a horrible screech/cry and felt her body begin to jerk next to me. I don’t remember too many details anymore, but I know she had a status seizure that felt like forever. The first call I made was to my parents, I had seizures as a toddler, and I needed someone to validate that that was what was happening. Then I called 911 and my parents had turned their car around and were there in what felt like an instant. I remember the paramedics commenting on how she was “heavily bundled up” which made me feel like it was my fault. She was in a cotton pj without feet and a 0.5 tog sleep sack, and under my lightweight quilt in our 66-degree room. At 6 months old, I thought this was pretty normal dress, but while she seized it just kept playing over and over in my head that this must have been the cause and this was my fault. This comment is one of the things that still sits with me to this day and something I am insanely vigilant on now. The hospital said it was a febrile seizure and something she would likely grow out of. At the time, that felt like a relief. However, over the next few months Nova would have more status seizures. The next “momentous” one was when we were visiting family at the beach. She was enjoying the water and playing, but I could just tell it was coming. And it did, this was the worst one yet. We rode to an unknown hospital in an unknown city. These people who’ve never met my girl before diagnosed Nova with epilepsy and put her on her first seizure med. I still held onto hope they were wrong. As time went on, Nova had daily myoclonus, nystagmus and was going into a status seizure once a week. It felt like nothing was working. We had genetic test results confirming the SCN1A mutation, but our neurologist at the time said it was very unlikely to be Dravet because she was developmentally on track, despite our research saying otherwise. Our last official appointment at this office was with a sub in because our neuro was out of town. The sub said he strongly believed she had Dravet. Coming into her first birthday, we were onto our third seizure med and had a 45-minute-long seizure. During that stay, they did another EEG and our neuro called to assure us her EEG results were not consistent with Dravet. At this point we were left confused, frustrated, and desperately seeking help for our baby. Something had to give, so we changed neurologists. There is still so much of Nova’s story to tell, so to keep this post easy to read, I will continue Nova’s journey (so far) in my next post.
