Josie's Journey

It's the end of August now and things are still getting better in the sweet world of Miss Josie girl. She's getting stronger. No "milestones" reached yet, but she is absolutely stronger. She is more connected to everyone around her. And the seizures are mild. We're heading in the right direction. "Believe" is a song from My Morning Jacket's latest album The Waterfall . I've become obsessed with this band, and can't believe (no pun) it took me so long to pay attention to them. Jim James is from another planet. The band is just amazing. "Believe" is actually my least favorite song on the album, but the word is among my top favorite words in the English language. Yo creo - it's pretty nice in Spanish too. So, the big news is.... (drumroll, please).. We got the medicinal hemp oil (CBD) for Josie to try as an anti-seizure medicine. I've written about it before, the marijuana-derived cannabidiol (CBD), which is stripped

I can't believe July is almost over. Boy, this summer is flying by. Last summer we were no strangers to grand mal seizures, ambulance rides, hospital stays, and anxiety. Things are so much better now! In all areas, Josie is doing so much better. Yes, she is still having seizures, but they are much less frequent (about one a week) and much less severe. In fact, many people might not even realize she's having one if they don't know what they look like. Still, the goal is no seizures and we will continue to do everything to make them go away - for good! My heart still breaks when a seizure takes control of Josie, but we all handle it with ease now. The rescue med we use now called medazalum is much easier on her. The diastat suppository we used to use would knock her out for the rest of the day. The medazalum, which is a nasal spray, stops the seizure and doesn't knock her out. Luckily, we haven't had to use the diastat in a very long time. So what is helping

If there's one constant with Josie, it's that everyone who meets her falls in love with her - instantly. My post title is a Grateful Dead song. "You don't know how easy it is.. You don't know how easy it is to love you." Oh, but Josie knows. How could she not? Speaking of those who love this little girl, her soon-to-be 11-year-old cousin, Macy, leads the pack. Yesterday, Josie and I had a Skype call with Macy's class. Macy has been talking about Josie all year long. She wrote an essay about Josie, made Josie her "Time Person of the Year," created a logo for Foxg1, and honored Josie by holding her Foxg1 banner while running a lap with her class. I would have loved to bring Josie to Macy's class rather than Skyping, but that would take away from Josie's therapies, so once again, we thank technology for these incredible connections we make. Each student asked questions, and such great questions. Not that I think there are any bad