Sunday, July 19, 2015

Lost in my Mind

I can't believe July is almost over. Boy, this summer is flying by. What a difference a year makes! 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? It's so hard to know. She is on three anti-seizure meds and a ketogenic diet. We avoid the things we thought could be triggers, like when she gets too warm or being over-stimulated. It's hard to know exactly what is helping, but we're just happy to know something is.

She's stronger. She may not have reached any "milestones" yet, like crawling, rolling over, etc., but she has great neck control and is walking in her walker better, and still trying so hard to move that little body.

Speaking of that little body, it ain't so little! She's getting big!

At her last doctor's visit, we learned that for the first time she's actually on the growth charts for her age! She was always below the charts for height and weight and I decided not to pay it any mind. But, now she is in the 15th percentile for both (I have to look at her records again). And it's no surprise that she's grown, she is so tall and getting so heavy! She's making my arms pretty strong.

I continue to stay positive about Josie. I like to think about how possible it is that there could be cure one day. There are incredible advances in gene therapy and it's very likely that if a drug is discovered to help other conditions, it could be applicable for Foxg1.

As positive as I am, I realize I have a trigger. There is one thing that sets me back and just makes me sad. That is being around other little girls Josie's age. Being in Montauk all summer with so many friends, it seems like I am surrounded by adorable, sassy, sweet, and hilarious little girls ages two to five. Josie will be four in November. I love these girls. they are my close friend's daughters. I love to be girly with them and get right down to their level, which is perhaps a little too easy for me, but when I see them all huddled around each other holding hands and dancing in a circle, I just wish that Josie could join them.

I see where Josie would be right now in her life if she didn't have Foxg1. I would know her personality. She would have friends and opinions and scheduled activities like dance class and gymnastics. She would call for me. Would she call me mama or mommy? She would say hilarious things and shake her butt to music. Would she have tantrums or be easy like Tanner has always been? She would be potty trained by now. She would be in the youngest group at camp. Would she be a girly-girl or a tom-boy? I have a feeling she'd be a girly-girl. Well, actually, she is a girly-girl and she does show her personality. She laughs and smiles and only cries when she's trying to tell us something. It's not that I don't know Josie. She is full of personality. I just can't help but get lost in thoughts of what she would be like right now, when I am around little girls her age.

Anyway, she swam today on her own! I bought this float by waterway babies that is designed for children with low muscle tone. It keeps her head above water so she can use her arms and legs without being held. It took me a while to let go, but once I did it, it was amazing. She loved it.

I will post the video as soon as I fix my iPhotos on my Mac (it doesn't want to load my photos). Stay tuned for pictures and video of the little swimmer.

This post title, of course, is a song title, "Lost in My Mind" by The Head and the Heart. I chose it in reference to feeling a bit lost in my mind when I'm around little girls Josie's age. Don't we all get lost in our minds, though? Of course we do. I also chose it because I recently saw a solo performance by Jonathan Russell, one of the singer-songwriters from the band. It was an intimate, lovely performance at a little outdoor venue on a lake across the street from our house. Nights like those make me get out of my head and just make me feel grateful for all that I have.












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