Posted inMom's Marvels
A Dravet Mom’s Diary
Hi friends, family, and fellow fighters- I want to start by saying, I am sorry in advance- but this post is not going to be my usual happy/grateful/positive post. Today…
Posted inRecommendations
Blue Tint Sunglasses
Nova has struggled with severe photosensitivity for about a year and a half now. We truly can not go outside at all due to her having extreme drop seizures. We…
Nova and Denver Update
Hello family, friends and fellow fighters, Today's post is just going to be a quick update on Nova and Denver. Since taking Nova off of Diacomit last month, we have…
Pediatrician Appointment/ Dravet Resources
Hello family, friends, and fellow fighters :) Today we had an AMAZING pediatrician appointment for both Nova and Denver! After talking with a few wonderful people in our Dravet community,…
Posted inDenver
Denney’s Early Intervention Assessment
Hello family, friends, and fellow fighters, One of the awesome resources Florida has available is their Early Steps program. It is a no cost program that offers support for children…
The Story of Our Genetic Mutation
Hello family, friends and fellow fighters, Today I'm going to share the story of uncovering the genetics behind our girls' Dravet diagnoses. Before sharing our story, I wanted to share…
Posted inNova
Meet Nova-Part 2
In my last post about Nova's journey, I ended with sharing that around her first birthday we decided to switch neurologists. I still to this day wonder if that was…
Posted inNova
Meet Nova – the OG Warrior Princess
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…
Posted inDenver
Meet Warrior Princess #2- Denver
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…