dravet-syndrome

Transition to Adult Care

I will be updating with all the exciting antics Abigaile has been up to, but I wanted to share this. This may be a longer post, but I wanted to share some reflections from Abigaile’s transition into adult neurological care. It’s been a journey filled with lessons, challenges, and growth, and I hope our experienceContinue reading “Transition to Adult Care”

Ultimate Disney World (21st) Birthday Weekend: Magical Moments and Royal Treats

OMG y’all, my 21st (legally drink) weekend was straight fire! 💯🔥 Poppy thought he could sleep in, but I was NOT about that life. I was up at 6:15, ready to kick off the best bday weekend EVER. 🎉 When we finally got up, it was straight to get my princess hair slayed by LadyContinue reading “Ultimate Disney World (21st) Birthday Weekend: Magical Moments and Royal Treats”

Reality VS Social Media

I will be posting Mays update in a next few days but I wanted to add this. Reality is just not social media; We all know social media is filled with lots of pretty moments, however we also know real life happen in the background. Yesterday was #dravetawarnessday my post was of the awesome timeContinue reading “Reality VS Social Media”

2024 March & April

What have I been up to???? Disney and lots of it. I have gone at least once every week for the month of March & April. Guess what I am NOT even tired from it. If I had my way, I would live there. Here are a few cool things that happened and a fewContinue reading “2024 March & April”

I am Groot

Abigaile uses a communication device; that when activated with her hands or eyes it speaks for her. Yet she still loves meeting people in person and trying to communicate verbally. With Dravet Syndrome someone is always required to be around her; who knows her and is medically trained. Her aids and I know her andContinue reading “I am Groot”