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…
Posted inRecommendations
The BEST Medicine Syringes
With two kids having Dravet we use soooo many medicine syringes. Most medicine bottles come with their own, however over the years I have found those typically don't last. We…
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…
Posted inMom's Marvels
Mom’s Marvels: How My Daughters Saved My Life
Today I'm going to be sharing a little bit of my life's journey and how my daughters helped me find my purpose. As a very young child I struggled to…
Posted inNova
Nova’s Experience Stopping Diacomit
Hello family, friends and fellow fighters, Today is one week exactly since we completely stopped Diacomit for Nova. The reason we chose to do this is we were not experiencing…
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…