Josie's Journey

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

"Ooo-oo- things will get brighter." How good is that song? One of the most covered songs ever and for good reason. It always reminds me that hard times will pass and the important part is to find the joy and lesson in every moment. Josie knows it too - that things are gonna get easier. She's the one who reminds me of that all the time. Things are getting easier, and better. Josie is showing some serious cognitive and physical improvement. Before I get there I want to say that I've sat in front of my computer many times trying to blog, but kept stopping. I wanted to write about something very very sad that happened in February. I woke up one morning and checked our private Facebook Foxg1 Family page and saw that one of our little fox's, Beatrice, passed away in her sleep. I never met Beatrice in person, or any of the other Fox families for that matter, but I felt like I knew her mom, Kathleen, from our online community. I knew Beatrice's face and smile

That blog title is a song by Rhianna. And Rich and Tanner would roll their eyes and look at each other when I say, "we have a dance to that song in my dance class!" I say that often when we listen to Tanner's pop radio stations. And he says, without fail, "please don't start doing your dance, mom." I'm officially embarrassing. Anyway, where have we been? Why haven't I been blogging? I don't know why, but I can say it's so amazing that so many people have reached out to me to ask! If you're reading this, thank you so much for caring about us. So... 1. We have nurse care!! We can actually sleep through the night - sort of. Well, the truth is, it's not a perfect solution and one of us is still sleeping with one eye open every night. One problem is that there are about 4-5 different nurses who rotate shifts. They don't know Josie's ways. Her seizures are not classic convulsion seizures that are obvious to anyone. And s