Thursday, February 4, 2016

Peaceful Easy Feeling

I'm afraid to write this, but I'm going to put superstition aside and share the good news that Josie has not had a seizure since December 30th.

Yup!

This is her longest seizure-free stretch since they started in April of 2014. It could be due to the CBD oil. She's still on a pretty heavy arsenal of meds on top of the CBD oil, but I do believe it's the CBD oil that's helping the most. Ain't that kind of funny, Mom? Soon, we may try dosing down on some of the other meds to see if we can reduce them. That would be fantastic.

It gives me such a "peaceful easy feeling" to think of Josie being seizure-free. Her brain is calm and she can move forward cognitively without being set back over and over again. And, of course, that post title is a tribute to Glen Frey. Rest in peace. And the great David Bowie, and Maurice White. Sigh. No more for a while, please!







Sunday, January 24, 2016

The "R" word

"What a retard." "Are you retarded?"

I hear the word used all the time.

Many of my friends say it. People I'm related to say it. I've even heard another special needs mom say it. Yes, I hate it. But, no, I don't entirely blame the people who use it so freely. It's just the way they (we) grew up. I've said it my fair share in the past. It's always been a commonly used word and some people just use it more than others.

I cringe.

I want to tell the person not to say it around me. And if you're close enough to me, I will tell you not to say it. The real reason I'll tell you is not just because I find it offensive, but when you say it, it's clear that you really don't know any better. And as an adult, or even a kid, in 2016, you should know better.

The other day I was able to feel the magnitude of why the word is so offensive. I know it makes me cringe whenever I hear it. I also know that by hating it so much, I'm connecting it to my daughter. But, I didn't quite clearly understand exactly why I hate it so much.

Until I got a form to fill out for the school I'm hoping Josie is accepted to one day.

The form said:
If a child has multiple disabilities please check all that apply:
Mental retardation
Autistic
Deaf
Emotionally impaired
Speech impaired
Visually impaired
The list goes on.

I couldn't check mental retardation.

I wanted to write next to it, "Don't you call her that." Is that even the term still? Isn't there a new term for it since the "r" word has been so widely used to mean the stupidest a person can be? Can't we just say cognitively disabled?

My daughter isn't stupid. Her brain won't tell her body what to do. But, she's in there. She is smart. She knows. I'm sure of it. Because of the gene that was misspelled while her DNA was being written, when she wants to speak, her brain can't send the signal to her voice and mouth to put it together.

When she wants to reach for something, again, her brain can't coordinate it with her arms. She has a neurological genetic condition that has limited the ability of her brain to function the way she wants it to.

Oh, it's just semantics. Sure. But, the word retarded has been polluted to the point that when anyone says it near a mom who has been asked to confirm that her daughter is in fact, mentally retarded, he or she is absolutely, unequivocally affecting that mom. That person is making her cringe inside.

I want to say ALL of this every time someone says, how "f'ing retarded" something or someone is, but 90% of the time, I don't say anything. I don't want to defend myself on this one. I can brush it right off. I realize they have no idea. My hope is one day, they will just know better. And if they've read this, they know now.







Thursday, December 3, 2015

Four!

We just celebrated Josie's fourth birthday! Our Thanksgiving gift.



Josie loves to celebrate her birthday, kind of like her mama. We celebrate all month. And why not?

On November 23rd, we joined my beautiful friend and spiritual angel, Macha Einbender, for her weekly meditation held at the historic, Sands Point Preserves castle. Macha led the small group through a guided mediation and centered it on Josie. We visualized Josie running around the most beautiful field next to a body of water, where dolphins swam.

I love to visualize what Josie will do one day. I believe in it. My sister had a poster on her bedroom wall growing up with a picture of two feet, pointed in worn out ballet slippers. It said, "If you can imagine it, you can achieve it, if you can achieve it, you can become it." That was the one quote I saw every day, not to be diluted with the millions of quotes we see every day on Instagram and Facebook. I feel like the quotes on social media walk me through my life. They seem to say what I need to hear (or read) at the exact moment I need it. But growing up, that was the one quote I knew so well. It taught me to believe and to visualize or "imagine" the outcome.

Josie was still during the meditation. She sat up against me, and my mom took a turn sitting with her too. At one point, when we let out a deep breath, Josie exhaled and sighed. She was in it.



On Thanksgiving we celebrated with family, as we always do. It's the best. Josie was really excited to see everyone, and especially to cuddle with her cousin, Macy.



And mommy and daddy got out for a night of fun!! We went to see one of my favorite bands (ever) My Morning Jacket at the Beacon Theater! They are just so so good and man, I am so grateful to be able to spend my time with my kids, my family, my friends, and music.



Thank you universe.... I've got the whole world in my hands....










Thursday, October 29, 2015

Did you give her the Marijuana?

That time a new friend overheard me talking to Josie's nanny on the phone and was like, "huh?"

I said, "Oh did you just hear me ask if Josie had her marijuana today? I'll explain."

It's been more than two months since we started Josie on CBD oil, the marijuana-derived oil that has been called the "Miracle Cure for Children with Severe Epilepsy."

I've read the stories and watched every local and national news report on Charlotte's Web.
I was hoping this was going to be the answer. I even thought about moving us to Colorado until it became legal in New York. We'd have the magic bullet. The idea was that we'd see drastic improvements from the CBD oil and then we could start to ween her off the other three heavy-duty anti-seizure meds she is on.

Well, I can't say it's the magic bullet for Josie. And I can't say it isn't helping at all. The one thing I do know is that I don't know what is helping or not.

The first two weeks on CBD were promising. She was seizure-free. And then she had one. It was so mild and only lasted a few minutes.

I have been working closely with the Nurse Practitioner (NP) of Josie's Neurologist on the dosage.

A little backstory/reminder, I switched neurologists about a year ago to work with the top doc at NYU Epilepsy Center who is also leading the study for Epidiolex, the pharmaceutical version of CBD oil that is currently in trials with children with Dravet Syndrome and Lennox Gastaut Syndrome. I was hoping to get Josie included in these trials, which I was told was a possibility, but as time went on, it was confirmed that the trials would not be opened to any child who did not have either of those syndromes.

Still, I am working with one of the leading epilepsy Neurologists in the world. When the law passed that I could get Charlotte's Web, the brand of CBD oil that was making all the "success" buzz, shipped to us, needless to say, I was pretty ecstatic. And to have our neurologist's NP guide me through the dosage is pretty damn awesome.

Anyway, we started at a super low dose of .1 ml. I even called our NP to say, "that can't be the right dose, I don't even have a syringe that skinny." She replied, "you'll have to get one ml syringes, it's the correct dose."

Doh.

So we drew the littlest bit up, and with every seizure that occurred since starting, we would raise it by .1 ml.

And this is where it gets interesting.

The more we'd raise the CBD, the more seizures Josie would have. We got to .5 ml and Josie started to have seizures just about every day. They were still mild, but way too frequent. So we started to reduce the dose, and now we're back at .2 ml and things are a bit better. She's still having these mild seizures, and some days they're not quite as mild, but the frequency is less.

When I compare how things were about a year ago to how they are now, it's clear that the arsenal of meds combined with, perhaps, the Ketogenic diet and CBD, have greatly helped control Josie's seizures. They are so mild that my new fear is that the nurses might miss them. And sometimes I'm afraid we are considering something a seizure that could just be her reaction to pain.

I'm pretty sure that happened the other night. She was moving uncontrollably and making sounds like she was gasping for air, and when her eyes got wide and she appeared to be tensing, we gave her the rescue meds. The thing was though, it didn't stop. She kept doing the same things and while the movements and sounds were not so typical of her seizures, the little tensing and wide-eyes were. After about ten minutes she let out a giant burp. And then she settled.

Oh, the trials of not being able to speak.

I often think, maybe there's one hair pulling in her ponytail. She can't fix her own hair. Maybe she has heart burn. Maybe her teeth hurt (we've exhausted that one). Maybe her belly hurts. Maybe she's just tired. Maybe she's bored. Maybe she hates the music I'm playing and wishes I would put something else on. Maybe she wants freaking pizza already and no more of that same vanilla flavored drink all day. Maybe she is crying because she wants to do more. Maybe she wants to go outside. She's almost four years old. She can be crying about anything.

She can't tell me, though. Not yet, at least. I often say to her, "Josie, please remember this one so you can tell me one day what it was you wanted to tell me."

I think she will.

Check out Josie's new ride!! This sweet pink Freedom Concepts bicycle was made possible by two incredible foundations who helped us get it. Thank you so much Cherished Creations and Spectrum of Dreams ! We promise to pay it forward.


Tuesday, September 22, 2015

I Say Hello!

When the doctor told us, "she'll probably never speak," my only thought was, You don't know that. Not even four years old and Josie is all about greeting people with a great big "hi."

Of course, it happened while I was away! Janice, our nanny (our Janny), sent me a video of Josie's first word. It's not perfected yet, but she is rounding her mouth and repeating the sound with absolute purpose. I was at a music festival in Virginia that our company was a sponsor of when Janice sent me this video, and it was hands down the greatest thing I heard all weekend. Sorry Robert Plant and John Bell, but this was better.

Note: This was just the first time she said it, it's gotten clearer every day! New video coming soon.


** The song title of this blog is none other than the Beatles "You Say Goodbye, I Say Hello." Or "Hi," rather. **

Tuesday, August 25, 2015

Believe

It's the end of August now and things are still getting better in the sweet world of Miss Josie girl.
She's getting stronger. No "milestones" reached yet, but she is absolutely stronger. She is more connected to everyone around her. And the seizures are mild.

We're heading in the right direction.

"Believe" is a song from My Morning Jacket's latest album The Waterfall. I've become obsessed with this band, and can't believe (no pun) it took me so long to pay attention to them. Jim James is from another planet. The band is just amazing. "Believe" is actually my least favorite song on the album, but the word is among my top favorite words in the English language. Yo creo - it's pretty nice in Spanish too.

So, the big news is.... (drumroll, please).. We got the medicinal hemp oil (CBD) for Josie to try as an anti-seizure medicine. I've written about it before, the marijuana-derived cannabidiol (CBD), which is stripped of THC (the part of marijuana that makes you high). It's been all over the news, including a CNN special called "Weeds," about it being tremendously successful in helping children and adults with seizures. More and more states are now legalizing it. New York is pretty late to the party, but we can now get it shipped here. So no more considerations of moving to Colorado for me!

Josie had her first dose today. Numero uno. We are continuing all her other (heavy duty) meds while we try this and the idea is that if she doesn't have any seizures, we can start to reduce the others. So we will wait and see how it works and I'll do a whole lot of believing that this can be the trick.


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.