Wednesday, March 30, 2016

This is happening : An overdue update!

It's been too long since I've posted and I have so much to share!

1. So, after I wrote the last post saying that Josie hadn't had a seizure since Dec. 30th, she had one the next day.

Go figure.

That was in early February. She had another in early March. That's two seizures in the past three months! And to be honest, the second one is questionable whether it was a seizure or not. Two mild seizure in three months is an incredible thing to report. Since her seizures started in April of 2014, she averaged four a week. For the first six months, they were often grand mal seizures. As anyone who has been following this blog knows, we had been continuously adding and changing her meds to find the right cocktail to stop them.

As I said in the last post, I'm crediting this to good 'ol marijuana! Who would've thought the one thing that saves my child's brain is the very thing kids grow up being told to stay away from. I swear I may go to Jamaica and pray to ganja g-ds for their dedication to the plant. Well, that's probably not necessary.

She's still on her heavy duty meds: depokote, fycompa, onfi, and a ketogenic diet. But none of the aforementioned worked this well.

And she is doing so great all around.

Before these last three months, she'd start to progress and then WHAM a seizure would set her back. They say having a seizure is like your brain running a marathon. Think of it as a 26 mile setback. And she was averaging four a week! My poor baby. But Josie girl never stopped trying. I swear she is so smart. And now she has the opportunity to progress without the setbacks.

It's amazing to see her now. She's so happy. She's so vocal. I mean SO vocal. She yells and laughs and babbles all day (and some nights). She's putting words together; her "hi" is clearer. She says "yeah" and she means it. And she will follow our mouths and imitate the movements when we say words like "love" and "mama."

It's adorable to hold her, look her in the eye, and very slowly say: IIIIIIIIIII LLLLLOOOOOOOVVVVEEEEEE You! She smiles immediately when she hears IIIIIII and then she puts her tongue under her top teeth like she's trying to say LLLLLL.

She's getting much closer to crawling and scoots in complete circles. In her walker, once she gets her groove on, she walks so quickly across the house to get to her favorite toy with the funny orange monkey. We call him Georgie. "Get your Georgie, Josie." She won't stop until she's got him! I always think of Johnny Depp in Blow when we say Georgie and never told anyone that until just now. "Money isn't real George." I digress.

Ok..on to number two.

2. We're hoping to get Josie into school in the Fall. There's only one school that I feel comfortable sending her to. It's the Henry Viscardi School and it's only 25 minutes away. We would pass by it on our way to Keep Moving Forward (PT gym) and I'd always point to it and say, "Josie you might go there one day."

I really hope she gets in. We had two days of evaluations recently. It was a strange experience. I was so nervous that when I got home I had to take a nap! It's a strange thing bringing your disabled child in for evaluations for the school you so hope accepts her. You see, Viscardi just recently expanded its program to include more "children like Josie." Before, it was for kids with more physical disabilities, but not such cognitive disabilities. They're opening it up to include more children with cognitive challenges.

I was hoping she would be her most alert, adorable, engaging, self during the evaluations. She was tired.

Rich apologized for her and said, "she's very tired right now," I kicked him under the table and said, "no she's ok!" It was almost an SNL skit. But, she stayed awake and flashed her winning smile.

The following day was more intense. She was asked to point to certain things on a poster board. She did pretty well if you ask me. She pointed to the right things. When the man asking her the questions asked "where are the boy's knees?" she swiped the bottom of the boys body.
The man said, "so not purposeful."
And I said, "oh those are his knees!"

I may or may not have tapped Josie's knee under the table to remind her what knees are. She didn't need my help, though.

So, we should know soon. Fingers crossed. Oh, I forgot to add, there is a pool there! She would swim twice a week!

Here we are outside Viscardi:


And here is Georgie and some pictures of Josie on her bike.




*Post title song reference: This is Happening is an album by LCD Soundsystem. I just saw their reunion show after a five year hiatus and it was bananas.