Josie's Journey

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...

We can put the question of whether or not these are seizures behind us. There is no doubt that they are. Last week was loaded with doctor visits. By the fifth appointment I felt a lot more confident in our direction than I did in my last post. First we saw an ENT, Dr. Max April (NYU), to discuss Josie's sleep study results. The sleep study showed mild obstructive apnea. Dr. April put a mini camera on a wire down Josie's nose and showed us her adenoids, which were a little large. There was nothing else of concern. He said he would only remove them if we were doing something else that required her to be put under anesthesia. That was we can take advantage of her already being under. Well, we have wanted to do a scope of her throat to see if she has something called EOE or Eosinophilic Esophagitis. The subject of EOE came up when she stopped eating food in July. She continues to drink her bottles, but stopped eating. The thought at the time was let's see if she has EOE ...

I was so full of hope in my last post. I thought we'd spend a few nights at NYU, capture a seizure on an EEG, and get Josie in the trial for epidiolex . Well, that wasn't quite the turnout. Actually, we are more confused now than we were before going to NYU for the week. So, Josie was admitted on a Tuesday. It was the only time I actually hoped for her to have a seizure. We needed it to be captured and it had been a few days since her last one, so chances were good that she would have one. Well, she sure did put on a perfect performance on Wednesday night. I noticed that her usual restless activity changed by the sound of her breathing. Rich and I recently realized that it's the sound of her breathing that lets us know it's starting to happen. She started to stiffen and went on to have a 12 minute seizure. A few minutes in, we gave her the Medazalin spray. It's the new rescue med that Dr. Davinsky prescribed. She continued to stiffen on and off, and after a...

Josie and I will be driving into the city today to stay at NYU hospital for a few nights. I'm actually pretty excited about this stay. And not just because I get to order city take-out food again. This past Tuesday we went to see Dr. Orrin Devinsky, Director of the NYU Comprehensive Epilepsy Center. Dr. D is the Neurologist running the trial for Epidiolex , the pharmaceutical anti-seizure marijuana drug. Medical marijuana, medically known as cannibidiol (CBD), for seizures became all the rage this past year with a strain called "Charlottes Web." Families are moving to Colorado, where it is currently legal, to treat their children. Despite all the hype, thanks to CNN's Sanjay Gupta and other primetime specials on Charlottes Web, it's not necessarily the miracle cure for all. I just came across the latest insights. A friend recently put me in touch with a father of a child who is part of the NYU trial for the new drug and this dad highly recommended that we see...

Yesterday was the perfect beautiful brisk Autumn Sunday. Rich took Tanner to flag football and I was planning to take Josie to a lunch party for my friend's nephew who has Autism. It had been a week since Josie's last seizure, so naturally I was on high alert. But, I was hoping that since adding Onfi to her medicinal cocktail, the seizures would be done with and we'd have no issues going to the party together. We'd go after her nap. I took out a pretty outfit since she rarely gets to dress up due to 'round the clock therapy. I wanted to take a shower while she napped, but I knew I couldn't take my eyes off of her. It's funny how sometimes I just know it's going to happen. Maternal instinct, perhaps. And then it started. I saw her starting to stiffen and I quickly jumped into action all while thinking, f#@%!, I'm by myself. I put her on her side. Grabbed the Diastat from the drawer. This will be the first time at the higher dose (7.5) of Diast...