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."


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


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.

Tuesday, June 2, 2015

Easy to Love You

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 questions - there is no judgement in curiosity.

"If Josie can't talk, how do you know what's bothering her?" "What is her day like?" " What kind of medicine does she take and do you know if she doesn't like it?"

I love answering questions about Josie. I've noticed as my friend's children are getting a little older, they have questions for me, but they're not sure how to ask. Most adults are hesitant to ask.
For the record, I welcome them all. I love to talk about Josie and to teach anyone, children especially, that it's ok to talk about the fact that Josie is different. At the end of the day, I believe we're helping so many people learn that we're all dealt a different deck of cards in life. I explained to them that we're not sad, we're inspired because Josie does and will continue to amaze us.

I think that the people who have Josie in their lives are much better for it. I really think she touches people in a way that can't be put to words and she makes people slow down and gain perspective. It's just so easy to love that little girl.

Macy's essay:
January 13, 2015
Macy Millones

If you had a super-power, what would it be and how would you use it to make a difference in someone’s life?

If I had a super-power it would be the power to cure every disease or medical condition or just a plain old sickness in the world. I chose that super-power because my cousin has a neurological genetic disorder called FOXG1 Syndrome that impacts her ability to walk, talk or crawl. She is three years old and cannot do any of those things, but I have high hopes of finding a cure. I try and help in as many ways as possible such as doing fundraisers, spreading awareness, and much more. I love my cousin and hope that she can have the same experiences as I do in life. I hope that she can share my love of using words in poetry. Not only would I use my super-power to cure FOXG1 Syndrome, but also I would use it to cancer, ALS, cerebral palsy, Parkinson’s disease, diabetes, and many more diseases. I hope that this super-power becomes real one day. I have faith.

We love you, Macy!

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.

Saturday, January 31, 2015

Where have You Been??

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.


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 she has so many other movements that could be confused with a seizure. The nurses don't know her yet, and we don't feel comfortable assuming they will know what is and what is not a seizure.

One nurse was holding Josie while her seizure started and he didn't know. I don't blame him at all. Who would know that the way she started to breath a little heavier and widen her eyes meant her seizure was starting. So we ask them to get us no matter what.

"If she twitches funny and you're not sure, get me."

The fact that it's not me or Rich staring at her all night is an incredible blessing. I sure as hell don't mind if I'm woken up a million times.

Another problem with the night nurses - and this is kind of funny, but not funny - they fall asleep!! I told Rich we need a monitor on Josie and a monitor on the nurse so we know if he or she is actually watching her. It's happened a number of times. Again, I don't blame them. It's nearly impossible to sit in a dark bedroom in a comfy rocking chair through the entire night and not nod off. Sometimes I just say their name and they wake up. Other times I have to give a full on nudge to their shoulder. I always laugh a little because waking people up is just funny, but in this case it's really not funny. She needs to be watched.

The upside is that we do have a nurse or two who really never fall asleep and hopefully they'll all get to know her better. But, one of us has the video monitor right next to our face all night and we both take casual strolls into her room throughout the night. It's still better than it was.

2. Josie has had two long (10 days and 12 days) seizure-free periods in the past 2 months.

Well, while I try to focus on the positive, those seizure-free reprieves came after her worst month for frequency. In December she started having seizures almost every day. Most of them were not as sever as others in the past, but some were still severe. I couldn't figure out if the combination of her ketogenic diet and meds was causing them to lessen in severity, but increase in frequency, or if the cocktail was just causing new milder seizures in between. Or would she be having more frequent severe seizures if not for this particular cocktail. It's just impossible to know. We do know that on the two occasion that we raised her Onfi, she had a nice long seizure-free run.

3. We went to Florida for more than 2 weeks over the Christmas break! Josie was a champ. She was great to travel with and a big part of the seizure-free run was while we were away. Unfortunately, they started again in the last few days there. Our Montauk babysitter, Ariel stayed with us for the entire time and that was beyond helpful. And Josie got to do her favorite activity - swim!

4. Josie will be having her adenoids removed on Feb. 26th and at the same time her GI will do a scope of her throat. I'm not excited for surgery of course, so I won't spend too much energy on it right now.

Here are a bunch of pictures from Xmas morning (Josie was fast asleep still) through our Florida trip.