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…
Posted inPop-Pop's Perspective
A Picture is Worth a Thousand Words…
Hello everyone, I am Pop-Pop. I wanted my first post to convey my perception of my granddaughters. Since my first moment holding Nova, from the first panicked phone call "Dad,…
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,…
