Wednesday, April 15, 2015

O-o-o child, things are gonna get easier.

"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 so well and I always thought she looked quite a bit like Josie.

We all support each other in this group and share stories of hard times and accomplishments. The one thing we don't expect to hear about is that a child passed away. There are just no words to explain what that feels like. When I read about Beatrice, I cried instantly and for days. I know it doesn't mean this will happen to Josie, I know it won't, but it just hit so close to home. And the sadness I feel for Kathleen and her husband is so immense. Kathleen doesn't know what happened that night - why Beatrice passed away. She says she won't have autopsy results for about 12 months, which seems like an awfully long time to keep her waiting.

So now we pray to Beatrice, our angel Fox to look over us and help us reach the cure. And to lighten up this story, just a few days after Beatrice passed, Kathleen gave birth to her baby boy.

I'm writing this post on a Wednesday late afternoon. Josie had two seizures today. One at 3 am and one at 2pm. She has a bad cold and maybe that's the trigger. Two in one day is rare. Her meds have been helping to keep her seizures mild, though. They are very mild and the medazalum (rescue drug) stops them within minutes. She also started a new med called Fycompa recently. I think it's helping. And we are weening of Keppra, which I don't think helped and only made her restless.

I've been bringing Josie back to Keep Moving Forward for intense physical therapy and I am seeing progress. They work her hard there and sometimes she grunts like a 200 pound weightlifter (not really). They are saints at this center. I've seen some amazing improvements from some of the other disabled patients there and it's just so encouraging. Josie isn't staying in one spot on the floor anymore. She scoots in a circle and is trying so hard to get those knees under her to crawl.

She is trying so hard to talk too. She waves now and we swear she is saying "Hi!" She will watch my mouth and move it to imitate me. Or she'll just laugh in my face like I'm crazy. That's cool. It's so cute.


Some day, yeah
We'll walk in the rays of a beautiful sun
Some day
When the world is much brighter
Ooh-oo child
Things are gonna be easier
Ooh-oo child
Things'll get brighter.