Tuesday, June 28, 2016

Melt.


Maybe when things are going great, I feel less inclined to blog. No news is good news, as they say. But, there is so much good news to report. Where do I begin?

These are all the things I want to share:

1. Josie is going to school in September!
2. She has been seizure-free for three months now!
3. She's so much more alert and present and just happier than ever!
4. Tanner has melted my heart with the things he's been saying lately.
5. A music group I'm a member of held an event and raised money for Foxg1!

All of the above deserve a separate post, but I'm going to cover as much ground as possible while I'm here.

1. School. It's happening. Josie will be going to the Little Village School in September. Oh the range of emotions I've been experiencing lately. It really hit me hard when her therapies at home came to an end. All these amazing therapists that have been coming over three times a week for the past three years will no longer be coming over (so often). They've become like family and they all truly love Josie. I will miss them and will miss my front door being a revolving door with people in and out.

I was very nervous about the distance to this school. It's 40 minutes away. And the idea of just an aide being on the bus with Jojo wasn't enough for me. I was told that if she has a seizure, they would have to pull over and call 911. No bueno. So, the school district, instead, is providing a nurse who will come to my house in the morning, ride the bus with Josie, stay with her all day in school, and ride the bus back with her. I couldn't be happier and more relieved. This alleviates my concerns and makes it possible for me to send her to school. Thank you, school district.

I'm excited for Josie. I'm feeling a lot about handing her over and not having her home all day, but I trust this is the best thing for her. I just choked up writing that last line.

2. Seizure-free!
I bow down and thank the higher power for the creation of CBD oil. Josie's been seizure-free since March 4th, and that one was so mild it's questionable if it even was a seizure. She had one mild one in Feb. and one in Jan.

Before Dec. 30th, for about two years, she was averaging four seizures a week. For two years I felt my heart was living outside of my body. I don't know if that makes sense, but that's how I explain the anxiety. I was always on alert. We learned to deal with them very calmly when they happened, and over time, with all her medicines, they became less severe, but every one broke my heart. And now that she is not suffering from seizures, she is progressing!

3. Josie is so much more alert! She's just more present and is laughing and smiling more. She's sleeping better at night, and she is just happier! She's rolled over from her back to her belly all by herself a few times. And she is trying so hard to talk! She says hi! I've got no doubt that she will continue to progress. People often ask me, "will she walk?" "will she talk?" I will never say no. Let's let Josie show us what she will or will not do. Anything is possible.

4. Tanner. The other day he said to me, "Mommy, isn't it cool that there are only 190 kids with Foxg1 in the world and we got one of them." Heart. Melt. I didn't want to make too big of a deal about how incredible his outlook is. I just said, "right! we're so lucky!" At that moment I realized, that defines how our family feels about our little girl. We are so lucky. She is so amazing and makes everyone who knows her better for it. The whole world should see special needs through the eyes of Tanner. He's something else. And to watch him with Josie... just melt.

***That's how this post got its title: "Melt." Phish's "Split Open and Melt" describes my heart when I see how Tanner feels about his sister. Plus, I'm going to see Phish with a group of girlfriends tomorrow and I am so so excited. For me, seeing live music with friends is the remedy to all of life's stressors.

5. NYC Music Freaks fundraiser. This past Fall, I was added to a private group called the NYC Music Freaks. It's a group of about 600 people who are, well, music freaks. It's basically an email forum that's been around for 16 years and you can't just join. My "music angel" Julie vouched for my freakiness and had me added. It's like I got the secret society tap. Mom, I made it! I'm officially a music freak.

About a month ago there was a "Freak's talent show" event where the talented freaks in the bunch performed. Some serious talent in this group! My two friends, Julie and Phyllis, asked the event committee if they could add a charitable component and told them about Josie and Foxg1. They immediately said yes, and the event raised about $1200 for Foxg1. I was moved by this and felt such a great connection to this new group of friends.

And get this: one of the founding freaks, Mitty, donated his art for the silent auction. He donated a framed photo of the Grateful Dead's Jerry Garcia on stage with Phish's Trey Anastasio. For those who don't know, this music event never happened. Mitty named the photo "What If?" At first, I didn't realize why I was so drawn to it. Well, it was cool and I loved the idea of the two of them jamming out together; the frame matches my decor and I just thought, I'd love a momento from this event. I bid on it and won it. My money goes straight to Foxg1, so it's really like it was a gift.

On the drive home I looked at the name "What if?" again and laughed. What IFF is the slogan for the International Fox1 Foundation. Our marketing says: What IFF our kids could talk? What IFF our kids didn't suffer from seizures? What IFF our kids were cured?

Talk about serendipity.

It's now hanging on my wall and has so much meaning.

Friday, May 6, 2016

Jeremy Spoke in Class Today...

Josie didn't get into the school I gushed about in my last post, the Henry Viscardi School.

I'm not going to lie. It was disappointing. They had us go there for two days of evaluations and really sold us on the school. We spoke at length to the medical team about what to do in the case of a seizure. They wanted every detail of her medicines, and so much more. I really think they should consider changing their process. Why not just evaluate the child first? Don't give parents false hope. And then, if you accept the child, bring the parents in to discuss everything the school needs to know about that child. There was more that disappointed me in the way they handled it, but no point in writing about it.

Their reason for not accepting Josie was, "We don't feel this is the right program for her." Ok, so why did you spend so much time telling me how the school has expanded its program to meet the needs for "kids like Josie." We saw a boy we knew from Keep Moving Forward who is no more able than Josie, so we figured, if he is here Josie's a lock. Multiple people at the school said, "Don't worry, she will get in." That shouldn't be allowed.

Oh, am I still talking about it?

I was hopeful because it is the closest school to home. By close, I mean 20 minutes away. I think I was trying to paint Viscardi as the best possible school for her, even though in reality, it might be too focused on academics for her. When they said they "expanded the program," they didn't really. They're just accepting kids with more cognitive disabilities, but they haven't actually changed the program to meet those kid's needs. She needs more sensory and physical attention. I certainly don't want her to just sit there not actually learning because the program is too advanced. I was telling myself it was the only option because I didn't want to consider a school that, while might be much more appropriate, is farther away.

Well, I have to get over that.

I ran into a friend in a store recently and talked about special needs schools with her. I don't see this friend often, but when I do, she often says the one thing that makes me see things differently. I have mounds of respect for her as a mother and when she looked at me and said, "You need to get over the distance." I knew at that moment she was right. She is also the same woman who said one of the greatest things to me a few years ago. When I said to her,"Josie has a long way to go." She responded with, "She has a long way to get there." That changed me, Margaret Higgins.

Fast forward to yesterday. I brought Josie to the Hagedorn Little Village School in Massapequa for evaluations. It was a lovely experience. This school came very highly recommended from several therapists who know and love Josie. It's smaller than Viscardi and I never once felt like we were interviewing for Harvard. The supervisor we met with pointed out all the great things Josie was doing right away, "I love how you look at me when I say your name, Josie." "Oh look how you grab exactly what you want."

They told us all about the school and how the classroom will work. They said we will request that Josie has a one-to-one aide with her all day. I love that.

When I asked when will I know if Josie is accepted? She quickly said, "Oh, she's accepted!"

Don't cry, Nicole. Be cool.

What a relief. I felt this overwhelming sense of opportunity for my little girl. She can experience something new. Something that will help her progress in so many ways. She loves to be around other children and now she could be on a daily basis. I felt very comfortable there.

Oh, but then I remembered the 40 minutes it took me to drive there and the multiple expressways. How I hate merging.

This isn't going to be easy. I've never handed Josie over to anyone. She's always been home with us or with Janice.

She will take a bus. There will be a matron on the bus watching her. The issue is that if she were to have a seizure, that person can't administer medicine. The driver would have to pull over and call 911. I'm wondering if there is a medical transportation option instead. Then again, perhaps her seizures are a thing of the past anyway. Positivity, Nicole, positivity.

I still have questions to ask, and still have to meet with the school district to discuss many things. But, for now we know she has a great school to go to in September. I just hope my comfort level with the long bus ride only gets better.

On another note: two days ago, Josie was home with her speech therapist and Janice. Tanner and I said goodbye to everyone and walked out the front door. A few seconds after we left, Josie said "Mama." I missed it! It's like she was calling me. It was the first time she said mama, although my mom says she heard her say it once before. I've been pretending to leave the house ever since.

She'll say it again. She'll do so many things. She has a long way to get there.

**

The reason for my blog post title: Josie spoke with her speech teacher, all this talk of school, and the fact that I just saw two incredible Pearl Jam shows at Madison Square Garden. They played "Jeremy." Man, I love that band. I admit, I cried when Eddie Vedder told the crowd about a condition called EB that the band is raising money for. The next day I looked up EB and watched a video about this severe and rare skin disorder. Heartbreaking.
The greatest thing about a band like Pearl Jam raising awareness and money for EB Research is that a cure for EB can also mean a cure for Foxg1 and the 6,800 rare disorders out there. If one gene mutation can be fixed, perhaps they all can.

Thank you Pearl Jam.









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.












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, 2015.

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.

Of course, that post title is a tribute to Glen Frey. May you rest in peace. And may the great David Bowie and Maurice White also rest in peace. Sigh. No more for a while, please!

Some recent photos for your cuteness pleasure... Oh those pigtails!








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.

Look around and see the rise of children with autism and other conditions and disabilities. Chances are, your family member, a close friend, or someone you work with is dealing with a child with a disability. It's just so far from being an appropriate term to use.

A few months ago, a friend asked me to explain exactly why the word affects me the way it does. I didn't have the right answer to explain it at that time. Now I do.

The other day I was able to feel the magnitude of why the word is so offensive. I knew it would make me cringe whenever I'd hear it. I also knew 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 intellectually 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 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....



And to stick with my theme of the post titles being related to music, Four by Blues Traveler was one of my favorite albums in the mid '90s. "Look Around" - what a song. John Popper once handed me his harmonica. How cool is that? I've given it to Tanner for him to learn on. He realizes how special it is.








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.