Brains Are Equally As Important As Boobs

*cough*  Um, hey there!

This space has been pretty dead for a lot of reasons, the main one being that we are just in the middle of surviving.  It is hard work.  Don't feel neglected though, you're not the only one!   I've been neglecting my hair, my church callings, friends, Fall baking (and we all know how important that is to me) and a host of other stuff....it's a group thing! ;)

I decided to clear the cobwebs and dust the old blog off though for something important.  It might take me three hours to write this post, since Cole is in his cycle and I can only write when he is resting in between seizures, but here it goes.

It can really bother me when I have people come up and tell me how glad they are that Cole is doing so great.  Huh?  What are you talking about?  Sometimes I just nod my head and say, "Yeah, it is great".  No one really wants to know that we have been to hell and back multiple times this year.  It's possibly my worst year ever; but, kind of like the tech who did my MRI yesterday said, "But you look like the picture of health!"  Yet here I am for yet another test! ;)  We need to work on our sick face, I guess.

It is obvious that these particular people only get their information from the snippets of this and that on Facebook.  Just because we haven't been in the hospital, doesn't mean things are going great.  It is because the hospital told us that they really can't help Cole any more.  That is our reality.  We just have our mobile Emergency Room here at the house with our team and equipment spread everywhere.  We batten down the hatches and hunker down whenever the bad days hit.  We have been occasionally having really good days, and we celebrate that, but the bad days would make even seasoned veterans shake in their boots.  Even we like talking about the good days more than the bad ones.  Not a lot of people can relate to having to watch their child shake and turn blue multiple times, among other things.  I'm glad for them, but it makes conversation difficult for some when they can't immediately find something in common.  It's uncomfortable.  So they just get what they can from those bits of social media and call it good.  Hey, we like to talk about the weather too!

Turns out, taking pictures of seizing children is really hard, who knew?

Now I love social media, especially Instagram.  It lets me see pictures of my nieces and nephews or friends that we live so far from, that is seems like a world away.  It is a way that my grandparents can see pictures of Cole, even though they have not seen him in person in 4 years.  It is also just a way for some people to stalk others and believe that they have the whole truth and nothing but the truth.  No matter how many "keeping it real" posts you do, no picture or status can explain everything about someone inside and out.  Nothing can compete with a sincere, genuine interest in someones life and that's what real friends are for, not just online acquaintances.  There is a place for both, but just because you follow someone on social media does not mean that you really know them.  I have actually had someone tell me to my face that, "The entire universe knows when Cole has a seizure.  It is all over the Internet!"  Wow.  Just.  Wow.  I was so shocked that I even came home and went through all of my posts of any kind.  I was questioning myself and wondered if it was really TMI as this person had been describing.  Not even 1/16th of anything that really happens to Cole makes it to "The Internet".  I didn't mention it once, during 346 convulsive seizures last month.  We consciously choose happiness, and choose to focus on the good.  Sometimes that is hard work, but we function better that way.  Being depressed can also be hard work.  Just because you don't see graphic posts doesn't mean that it is sunshine and rainbows around here.  I don't mean to be a downer, but this person obviously didn't choose to get to know us intimately and did not understand our day to day life.  That's okay!  Just don't make assumptions.  I don't assume that you are self absorbed if you post a picture of yourself, or if there are more than two posts in a day.  Or if everything looks perfect, then you must be deluding yourself that you are perfect.  Or if you go and have fun without me that we are no longer friends in real life.  Who makes up these secret rules anyway?  Maybe that is why I have really backed off on most social media.  It is a platform to automatically judge something or someone, with a picture or a sentence,  and I don't like that.  I'm going to keep my feed full of things that are important to me, because it is MY feed!  You should do the same.  I'm not going to stop being on Facebook, because that is where I connect with other Dravet and 4 Paws for Ability parents.  I get good information there, amongst the garbage.  I am just not sure when being real friends was replaced with pushing a like button.

No one wants to come up to me and automatically be my friend if they saw a picture of me floating around where I was covered in drool, holding a child that looked like he had been beaten up.  Most likely they would want to stay away, or call authorities.  I get that.  It's a side that I don't particularly like either, but it is real.  Most would prefer this.  Don't we look cute?

Take yesterday for instance.  Cole fell forward and hit his head on the wall as he started to have a seizure, even though I was right there and caught him.  I just happened to catch the bottom half as he went down.  Those red marks on his noggin are not blood, this time.  That's not just casual conversation that you can bring up anywhere.  It would make the majority of people feel unsettled if I came up and started describing the details of our day to day life.  So how much is too much information?  Where is the line between advocacy and emotional vomit?  I have seen some other parents just share too much, even for me-who tends to be an over sharer, according to some.

Now, why all the hype?  November is Epilepsy Awareness Month.  Did you know that?  Are there people in your feed that are bringing awareness? Or is it just too much information?  How many people talked about Breast Cancer in October?  Wore pink?  Even professional sports teams, talk shows, the radio, bakeries, etc. participated-the promotion was every where.  Look, I am all for boobs...I have them, even if they are slight; and I have nothing against Breast Cancer.  In fact, I have someone that I care about who is fighting it right now.  It is a horrible, horrible thing to go through.  I just want to bring light to the fact that it is somehow easier to talk about boobs than brains.  Are people more comfortable with it because they know so many other people with breasts?

That doesn't make sense really, because there are more people will brains than breasts.  All people have brains, whether we tease about it or not.  No one on the Wizard of Oz was wishing that they had a great rack!  Some are more willing to talk about mastectomy's than the fact that my child will never have a chance a remission.  He doesn't have the options like chemotherapy or radiation.  He will have Dravet Syndrome forever.  He will never be a "survivor" in that sense where he is "free" from his illness.  It deserves just as much advocacy or more.  A body can live without boobs, but not without a brain.  Did you know that there are more deaths per year from Epilepsy than Breast Cancer?  More.  Foundations like this one have my respect but they are few.  We are lucky that we can have this roller coaster we are on remind us that the downs can make you feel like you are going to puke, but the ups are thrilling.  We try to focus on the ups.  If you are our friend in real life, via the Internet or even just an acquaintance who happened to stop by our site, maybe you could take a couple of moments this month and educate yourself a little about seizures, know as much about them that you do about Breast Cancer.  If talking about brains or seizures makes you feel unsettled, just look at a couple of websites, like CURE or Dravet Syndrome Foundation or American Epilepsy Society.  Or you can think about Cole.  It is easy, because he is pretty cute.  We are going to continue to be advocates, even if makes others feel uncomfortable.  It is important, to us.  In our world, it is not too much information.  It is the reason we started this blog.  To educate others and provide support.  I'm not promising that I will be writing frequently, but enough people came up to me at the Dravet conference and mentioned my blog that I know it is helping someone, some where.  Here is to hoping that we all can have more days like this one.  Outside, walking, talking, eating by mouth.  Things that we can easily take for granted, but for Cole they are a victory.

Dropped Off

Hey Friends-
Sorry it seems like we have dropped off of planet earth.

Our little world has been chaotic, to say the least, these last few months.

The extreme Reader's Digest version:
* Make A Wish was awesome.  Cole struggled.  We had fun in between the seizures and took over 400 pictures
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami
* I can't count how many times we have changed and tweaked meds
* Normal tonic clonic count right now is around 15 to 20 daily.  Mostly at night.  Never thought that could be normal
*We drove to Florida and stayed inpatient for 6 days.  Had to detox Cole and have some tough decisions ahead
* I don't have lupus!  YAY!  I do have fibromyalgia, and possibly osteo arthritis.  I've tried a few things and think that maybe I found something to help with the pain
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done
* Brian and I got to go to Hawaii for a week with my parents and siblings; something that has been planned for 6 months.  By the skin of our teeth and with the help of 7 nurses, two good friends and a pack of teenage boys (our friend's sons), Cole was taken care of.  Sometimes we had a ratio of 3 adults to 1 kid, but it happened and we are grateful!  I have missed my Hawaii home so much
* We don't sleep.  At least for more than 2 or 3 hours at a time
* Showering has become totally optional
* Our finances are more than a little strapped
* Slugger is still awesome
* If you are our friends "In Real Life" we are so sorry that we are neglecting you
* We are glad that we didn't switch jobs last month.  Brian's co-workers have been awesome about our crazy schedule
* I have over 300 e-mails in my inbox
* We got "fired" from therapy because Cole has not been attending over 80% of his sessions (due to seizures, mind you).  I am not sure I have the strength to pull out Tiger Mama and fight this one
* I don't watch TV any more
* I gained 7 pounds in Hawaii and it was totally worth it!
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year
* It is very hot and humid around here.  Or it is pouring rain
* Cole has a new kiddie accordion and it is hilarious to watch him play it
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others
* We are grateful for insurance

There are a lot of Grand Canyon sized gaps in there.  All in all, we are tired, we are stressed, we are still married, we are still happy and trying to find the good in every day.  We live minute to minute and that means things like dishes, blogging and changing our clothes don't happen on a regularly scheduled basis.  Our lawn looks like a jungle, our hair is unkempt, but we are trying to do what is best for our boy.  Sometimes that means just sitting back and letting go of the things that you thought were important and realizing that they really weren't that important at all.  Or maybe I am just trying to make myself feel better about not vacuuming? :)

Peace and Blessings, Friends!  One of these days I will jump back on the bandwagon.

It Is Getting Closer!

The anticipation is building for our Make A Wish trip!

The wish granters threw Cole a little party to help him get excited.  We invited a few people that have helped him along the way.  His teacher, therapists, doctor and some other important people came.  We had such a good time.

 They brought balloons, Cole's favorite!  The others knew him so well that a lot of them brought bubbles.  Cole thinks that if we are having a party, it must be his birthday.  So they obliged and brought him presents!  We are so lucky to have these special people in our life.

 The weather was just right and we got to be outside for a little bit.  Cole had a wonderful day.  We totally paid for it that night with 3 big seizures, but the party was great.

Cole really doesn't understand anticipation.  He is very much in the moment and black or white.  I have been talking non-stop about our trip to him and he is just in the frame of mind where he thinks, "Well why aren't we there already?"  He does not understand that we are going for him.  That he will get special treatment.  He thinks he rules the world anyway! ;)  He will parrot back when I ask "Where are we going on an airplane?"  "TO SEE MICKEY MOUSE!"

It seems like I can't find pictures of Slugger and his sister.  They are too funny when they are together.  It is like Wrestle Mania and they totally forget that they are service dogs.  We are so lucky to live close.

My friend helped me make this adorable bunting banner with her awesome Silhouette Cameo.  That thing is amazing!  My house is so dark you can't see it very well, but the font is the perfect iconic Disney lettering.  So much fun!  I am actually glad that I don't have a craft budget.  I think if I had this machine, it could be a real time consumer.  I would just think of parties to have so I could create projects! ;)

Cole loves to paint so he helped me make this Mickey head topiary.  It has glitter on it, cause the boy loves him some glitter!  I can't help it.  I do too!  The red paper on the banner is glitter paper.  We like things that are sparkly.

We are so excited to make Cole's dreams come true.  He has been on a super high dose of steroids to help him out while we are in Florida.  So far, there has not been a big change.  We are hoping that the timing is just right and he gets a break while we are there.  Here's to hoping!  Maybe the steroids will act just like the high dose antibiotics, maybe they won't.  We just want Cole to have as great of a time as possible.

I had some custom Thank You notes made.  We want to make sure that we show gratitude to everyone that has helped us on our journey.  This Make A Wish trip is a once in a lifetime dream come true and every one that had a part to play in it big or small needs recognition.  Plus it was another excuse to use some gorgeous pictures of my boys.  For those of you who are wondering, I used Pinhole Press.  I wanted something affordable and easy to manage.  These custom notepads were perfect!  This way, Cole can just rip off a page and give it to whoever helps him along the way.  There have been plenty of helpers and I am sure that there will be more on our trip!

Only a few more days to go!

A Big, Hairy Mess

Stress is not a joke.  If I can do anything right though, it is handling stressful situations...so I say to myself.

I, in my previous life, worked in very stressful situations and helped to guide others through some of the most difficult times of their life.  I've had my fair share of scares throughout my existence and have had to learn how to deal with a body that I can't control.

I remember a prank that my dad pulled one day on my family.  He loves practical jokes and is known for pulling off some of the best April Fool's jokes, ever.  He was carving a turkey with an electric knife and pretended to cut his hand open.  He had squirted ketchup in his hand previously, so when he lifted his arm it truly looked like blood from a distance.  He had to take my brother aside beforehand to tell him what he had planned, so he wouldn't be shocked.  Something to note also is that when I was very small, he had an accident where he literally cut his face open with a chainsaw while working on our farm.  So...cutting body parts with motorized sharp stuff=not funny in our family.  One sister screamed, curled up in a ball and covered her eyes.  Another just started to cry.  One started yelling obscenities (I have a lot of sisters).  My mom freaked and got mad at him for cutting himself.  I, got up and ran to him to help, asking him questions about how he felt as I ran over.  When he showed that it was a joke, everyone was really upset and did not think it was as hilarious as he did.  Funny thing...he hasn't tried to cut off an appendage since ;)

Now, I mean nothing against the females in my family.  I love them all dearly.  I am not trying to say that I am the good one, or the brave one.  This story just shows that I can handle stress pretty well.  I tend to freak out alone, in my head, after the fact.  See this more recent incident.  I know that my life right now is extremely stressful.  Brian and I took a test from his grad studies again recently and we are at the highest end of the stress spectrum.  Fun.  What I am getting at is that I know that things are rough.  I try to take it in stride and take as good care of myself as I can.

Then a few weeks ago, something happened.

 I was blow drying my hair and low and behold, I found a bald spot about the size of a quarter.  Isn't that every woman's (or mans for that matter) dream?  I knew that my hair had really been thinning a lot, but I just thought it was stress.

 I have (usually) extremely thick hair and have to get it thinned with a razor about every 6 weeks.  You can see here my new, lovely receding hairline.  Thank goodness I have been growing it out so I can rock a major comb over!

Alopecia Areata is something that can happen under extreme stress.  I also knew that it could mean something else was happening.  I have not felt well for a long time, but I just attributed it all to the hectic pace of my life and that fact, once again, that it is pretty stressful around here.

It doesn't matter how many support systems you have in place, caring for a child with extreme special needs is hard.  I know that we as a family have suffered in our  jobs, church callings, finances, relationships with our friends, each other, extended family...the list goes on.  Did you know that research has proven that primary care givers have the worst oral hygiene of anyone?  If you have to go to therapy 5 days a week and see 11 specialists for your child, getting your teeth cleaned totally goes on the back burner.  Next thing you know, it has been 3 years since you have seen a dentist.  That goes for lots of other things too.  SO-I haven't been in to the doctor for a while.  The going bald thing threw me for a loop and I made an appointment right away.  It could be stress, it could be something else.  But I wasn't going to wait around for the rest of my hair to fall out!  My head is just not shaped well enough to pull off the Bic look!  However, I will trade baldness for seizures any day.  I am seriously dumbfounded that I have not had a seizure during all of this.  A true blessing.

The initial results show that I have markers for Lupus or another Autoimmune Disorder.   So my body is attacking itself.  When it attacks the hair follicles, thinking they are foreign, it falls out.  So, therefore I am 32 and going to join the ranks of many senior aged men.  I have a lot of other symptoms that fit the bill.  The final diagnosis is yet to be confirmed, while awaiting more test results.  The bottom line is, something is wrong.  The first thing they tell you to do when you are diagnosed with an Autoimmune Disorder is to de-stress your life.  That is not going to happen! Cole had three major seizures last night, something that unfortunately is totally normal around here.  Thanks for the advice, but it is not my reality ;)

I honestly am not allowing myself to freak out about this or slip into a depressed state.  I have learned over the years that I absolutely can not control the fact that my body is frequently prone to freaking out. So, I just have to treat it as good as I can and hope for the best from it.  Sometimes it gives back, other times it feel like I am 93 years old.  Now I guess I know why! ;)  You probably can also guess that it has taken a toll on my blogging amongst other things.

With everything that is going on in our little world, I keep a positive outlook.  Someone said to me the other day when we were discussing the newest developments with Cole and I, "Niki, I can't believe that I am sitting here, listening to you tell me all of this really horrible, bad stuff that is happening in your life...and I still feel happy and reassured.  You are an example to me of a positive attitude while not being in denial of the hand that has been dealt to you."  I assured her that I was only human, but it is just a part of me to be this way.  I will put a little plug in for my attitude.  Yep, I still get lonely, hurt, frustrated, afraid and a bunch of other negative emotions with the rest of you.  I probably seem ticked off a lot of the time when I am just probably worried about how to best take care of Cole and my family; or being quiet because I simply want to be quiet.  If you don't ask what is going on, then you assume.  Sometimes it is hard to paste a smile on constantly and pretend, but ask someone what they are thinking about before you assume that you know what is going on inside of their head!  *off my soapbox* All in all I think that my attitude is the only thing that I have control over.  So while I am realistic about our situation, I don't want to (or frankly have time to) curl up in my bed and cry for a week.  I've got too much to do-including getting excited for our Make A Wish trip!  It has been a real bright spot.

Darkness exists, but we do not have to dwell there.  There are always going to be bad people, bad stuff happening and negativity.  Look at this week alone in America.  Multiple stabbings at a college, a bombing at the finish line of the Boston Marathon and a plant explosion that took many lives.  There is hard stuff all around us.  I was obsessed with Mr Rogers as a child and I love what he says about these kind of things, "When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers.  You will always find people who are helping.'  To this day, especially in times of "disaster", I remember my mother's words and I am always comforted by realizing that there are still so many helpers - so many caring people in this world".  My faith teaches the same thing.  We can be there for each other in times of trial.

I know that the real friends will come out of the woodwork during this hiccup in our family's bumpy road.  I hate to be the one to not be the "helper".  A wise friend of mine once told me though, "Allow people the opportunity to serve you" and it has stuck with me.  If you are reading this, think of someone who might need you to be the helper.  It may be a family who has a child with special needs.  A widow.  A divorcee.  Someone who is lonely.  Someone who lost their job.  Someone who is sick.  We all need help.  Every one of us.  Even if it is not out there flashing in neon lights.  Don't just say, "Let me know if you need anything".  Show up and do their dishes.  Mow their lawn.  Take their kids so they can go on a date.  Come over on a weeknight with a tub of ice cream and a good movie.  Send them money, with no strings attached.  This is an excellent article about all being enlisted to help each other through this journey we call life and the lessons that we can learn from each other.  I am re-committing myself to look for opportunities to help others and to *sigh* let others help me.  As soon as I finish looking at wigs online ;)

Purple Pictures 2013

We had another outpouring of support for International Purple Day this year!  Friends from all over the world showed Cole and I love by wearing purple and talking about Epilepsy.   Even celebrities like the Cake Boss got into it!  His niece, who is also his god daughter, has Epilepsy.

Cole and Slugger struggled with taking a picture

We had little kids from all different places (some that live all the way in Japan!)

 People who are related to us

 People who don't even know us

and people that we haven't seen for a long time.

People who are related to us in our hearts

 and people who are really dedicated to our cause, whether we see them all of the time or not

(I just realized that you are in here twice, E!  Lucky you!!)

 We loved seeing everything purple from headband and beanies to toe nail polish and even

Grandpa's black/purple eye from a Dodgeball match

 We know that there are a lot of our friends out there that struggle with all kinds of things

but for just one day, it was so beautiful to see people around the world come together

and do something as easy as wearing purple 

to show their support for people who have Epilepsy

 We loved seeing you on Facebook and Instagram
Sorry if I didn't post your picture

We can't wait for next year!

Purple Power

IRL

Welcome to the first in a series of VERY picture heavy posts.It is always great to meet with my Dravet friends "In Real Life". Some have been friends for years, others this is our first interaction.
All are special. These are some of the people who can read me like a book.
Some of the people who cheer/roar for us when we accomplish even minor things.
Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.Some come from far away places-We had people from Australia, Austria, Ireland, Israel, Mexico, Cyprus, England, Africa, a crazy big group from Canada and other countries represented this year!
Some are from your backyard. Some are so sweet that you want to pack them up and take them home with you.
The children especially leave huge marks on your heart. I love these two.
Some have an alarming amount in common with you.
But with all of them...you feel a whole lot of love. This is my favorite part of the conference. Making connections. The internet is awesome, but I will always prefer to "friend" someone IRL.

Plan A, B and C

I will start when we almost went to the hospital, before we went to the hospital.

We woke up early the morning after and packed into the car, heading down to see our personal rockstar, Dr Miller. Got Cole all hooked up.

All he wanted was to hold the board they strap babies on to when they put on their leads. Okay?

When we finally got settled in our room, all Cole cared about was the electronics and the magic keyboard. Are you surprised?

Since Cole had a fever, we gave him Tylenol, which curbed his small seizures (we find this is the case) and so he did not perform very well during the beginning of his Video EEG. As it wore off and he got tired of being poked, prodded and examined...the myoclonics joined the party and we had plenty of data. I have mentioned more than once that I have a disdain for EEG's. Willing your child to have seizures is such a backwards experience. You spend their whole life wishing that they will be healthy and strong, then you get them all hooked up and hope that they just seize away so doctors can capture data. You are armed with a button, ready to push at the slightest hint of activity. Turns out, I was 100% right at capturing seizures if I was looking at Cole. Only had a less than 10% error rate, which were probably attributed to blinking/drowsiness that we attributed as eye flutters. He had a great myoclonic cluster that lasted over an hour and a half. When the resident heard it had been that long, he came in and gave me a stiff lecture about how we should call him if we think Cole is seizing. Uh, do you want to take a seat? We'll be here all night.

These people could not fathom that we were not giving him heavy drugs to stop the small seizures. Eventually, I asked for something, they didn't get it fast enough and so I went to my own stash...I got in trouble again. Seriously, they wanted to give him 10mg of Diastat for myoclonics. I finally got them to compromise at 5mg. I appreciate doctors and modern medicine, but more is not more when it comes to drugs. Why use 10, when 2.5 will work? Every time we use benzo's, there are side effects. I know Cole well enough to realize that little seizures, just need little drugs. Big seizures need big drugs. Glad that I don't take it personally any more. I used to beat myself up after I would hear that we were doing things wrong, from doctors who had never met us or didn't even know our son. Now, I know that we know our son best. What works for us, is what we are going to do. Thank goodness Dr Miller is on board with this. Eventually we got an EEG that looked like he was drunk, since he had the Diastat.

They really should make pediatric hospital beds, bigger...since the majority of the time they have a parent in there with them.

We made the employees look far and wide for "the car". Cole knows that when he is in the hospital, they have cars. It is part of his in-patient routine. Miami only has 2 cars for the entire hospital and they are in the playrooms. We need to get one donated to the neuro unit. The boy freaked out for an hour after he woke up from his seizure induced sleep, because all he wanted was a car.

Slugger was a celebrity and people kept stopping by to visit him. When Brian would take him outside he would get accosted on his way there and back, by families who wanted them to visit their room. Every one was certain they were volunteers :)

SO-results are that Cole is having 200-400 small seizures a day. This is compared to 70-100 a day last year, when we thought things were bad. Oh, Dravet...why do you have to keep proving to us that things can always get worse. It truly is laughable how nervous we have been along the way and now we look back on those days and laugh. Dravet has truly taught us the power of the human will and the strength that you can find in yourself when you feel like you have absolutely nothing left to give. I remember that trip we took in 2009 and how freaking scared we were to cross the Nevada desert, that something might happen. This was before drops, before photosensitivity, before temperature issues...before a lot of things. We look back on those few days and how absolutely precious they were. We spent an entire day at the beach and nothing happened. That little trip with just the three of us will never be possible again. We will attempt something like it, sure. But this time armed with oxygen, a bag of rescue meds, a cooling vest, FL-41 lenses and a seizure alert dog...and maybe we will stay for an hour.

I like to talk to Dr Miller about Plan A, Plan B and Plan C, since we know that most things don't work out for Cole. It is not being pessimistic, it is just being realistic. I want to know what the next step is, with his help. Right now, the first step was to increase Cole's Keppra. He has been on it a long time, when he misses a dose he has a seizure, so we know it is working. It is one of the safest anti-epileptic drugs on the market, not being broken down in the liver like most of the others. So, to make up for his height and weight change for the last year, we re-calculated his dose to be almost exactly what he was on previously, but took into account the changes his body has made. We found out in FL that Cole has grown two inches since December. I knew his feet, but wow-no wonder I keep finding clothes that fit yesterday don't fit today. Plan A-change the Keppra dose, with this we also changed it to three times a day, hoping to get rid of that early evening hump we have been having trouble with. So thankful for technology, that phone of mine reminds me every day at 2:00 that it is Keppra time. I have to pack a syringe that is pre-drawn into his lunch box if he is going to school.

Plan B-Add Bromide. Cole has failed Phenobarbitol, Depakote, Topamax and Clonazepam. He has 7 seizure types and is progressively getting worse. The doctors definitely classify him as complicated and intractable. So, Bromide is an "End of the road" drug that we are willing to give a shot. The only one really left is Stiripentol and we are not ready for that yet. We don't have the money.

Plan C-Look at something that we have tried in the past, with a different dose or combination. We really don't want to get to Plan C.

Here's to hoping that Plan A and B work out!

DSD 4

I posted this on Facebook, but for the rest of you (lovely lurkers included), I wanted to make sure that you hear the news!


The 4th Biennial Professional and Family Conference for Dravet Spectrum Disorders is coming up in August!  This conference is one of the best things we have ever attended.  This year, it is going to be even more amazing.


An announcement from Joan Vogel Skluzacek-Founder of the IDEA League (now Dravet.org):
The doctors and other speakers who we are inviting to participate as conference faculty are showing remarkable enthusiasm and support for this event this year. Seven clinical epileptologists with special interest and expertise in DS have already agreed to provide small group consultations in addition to giving their talks. Some are going to great effort to work this into their schedules, around their vacations, etc., and they are very willing to volunteer their time and effort to prepare and give their talks and consultations. As a parent and as a Dravet.org volunteer it is very gratifying to get this insight to how much they care and how great their interest and enthusiasm is for doing this work and helping our cause. It is going to be a wonderful conference!


I can not tell you how excited I am about this.  The number of physicians attending has really increased, and this is so wonderful to a community that is relatively small.  It is totally worth the time and travel to meet with these doctors and have them consult on your child's case.  These consultations would cost you thousands of dollars if you met with these physicians at their respective hospitals.  Plus, it also provides them more insight into DSD, helping our future.  I also want to add, getting to know other Dravet families from around the world is amazing.  I would encourage every one, even those who do not have a proper diagnosis, but have this feeling that their child could fit into the category of Dravet Spectrum Disorder or Ion Channelopathy, to try their hardest to attend.  The conference is in Minneapolis, Minnesota this year, August 16-19.  Plus, for those in the U.S. most travel expenses for attending medical conferences are tax deductible-bonus!  Here is the link for registration.  You can even invite your therapists and pediatricians, they can get credit for this conference.


This conference is only held every other year, so do not wait.  It doesn't matter which organization you are affiliated with, this conference helps all of us, and the doctors who treat our children.  We actually attended, last minute, before we even got Cole's proper diagnosis.  I knew in my gut that he had Dravet Syndrome, but the doctors were not on board yet.  You can imagine with my personality, that I went in to it wanting to learn all that I could, if this was going to be our new life.  It can be a little intimidating for newly-diagnosed or undiagnosed parents, but let me tell you this-I am SO glad that we went.  I learned more in two days than I had in hours upon hours, upon hours of looking on the internet for two years.   For those who have had a diagnosis for a while, or have older children, these presentations will not be as much of a shock to the system, more as an education.  I have been in the medical field, professionally, for a long time but I learned things about bone health, genetics and other subjects that I had never learned about at work.  It was here that Brian and I introduced the FL-41 lenses to other parents who had photosensitive children.  It was here that I started giving iPad demonstrations to anyone that would listen, parents and doctors alike.  Some were so impressed by my passion that they wanted to provide iPads for multiple children and now it is a vital part of their charity.  Others found that there was a better alternative to bulky, expensive communication devices they were using.  We were at the conference when we first got to meet families that had seizure alert dogs from 4 Paws for Ability.  It was also the first time that I had really talked to a family that had a service dog (there were 4 there, if I remember-it's been 2 years!).  It was here that I learned about Miami Childrens Hospital, and had lunch with most of the Ion Channel Clinic team.  You know what a blessing Miami has been in our lives, but I was first impressed by their staff at this conference.  It was here that I met Cole's local neurologist, before we moved East, in fact I sat next to him at dinner one night, and also watched him play the piano on another night.  You don't get those kind of opportunities at your regular appointments.


The biggest bonus for Brian and I is the friendships that we have cultivated from attending this conference.  You can read a little bit about my experience at that first conference here.  Hardly a day goes by that I don't have contact with someone who I first met at this conference.  We have found our second family.  We have gone on trips together, vented to each other about things that no one else could truly understand, laughed and applauded each others triumphs and asked each other questions.  It was like going to the magical land of Oz and realizing that everyone else was there to see the wizard too.  We formed an instant, dynamic family of sorts. 


Okay, okay I will stop singing praises.  I think you get the picture:)  If you want more information, e-mail me or private message me on Facebook.  I hope to see a lot of you there, and hope that you can get some answers to your questions.

National Walk For Epilepsy 2012

We have been so busy lately with lots going on. House full of company, Jill's House, the walk, spring break, a road trip...I think I need a vacation! :)

We are so glad that we got to attend this year's National Walk for Epilepsy. There were over 4,000 people there! It was hard to get very good pictures of the crowd, because we had to keep moving. I have never personally been to such a large event based around advocacy. It was moving and I felt myself tearing up multiple times. An absolute sea of people, all with one cause, to bring more awareness.I am grateful that Cole is doing better with handling being outside and overstimulation. We could have never done this last year. We met most of Team Dravet before and walked over to the mall. You can't really see our team t-shirts, they say:

Team Dravet

Brought together by chance. Staying together for a cause.

Even though we live here, we do not go to the mall very often, so it was wonderful to be able to see it in all of its glory-construction included :)

Here is Team Dravet, 2012. We had a great turn out this year and hope to have even more next year! It was hard to stay together, but nice to see purple hats amongst the crowd and spot "family".
Speaking of family, all of Brian's siblings were together for this. Something that does not happen very often. We were so touched that they came to be a part of the walk with us.
We got to see part of another family of ours- 4 Paws for Ability! We walked with dogs Bo and, Slugger's sister, Samba. I am sure there were others there! It was great to see so many service dogs in one spot. I must say though, Slugger was one of the most well behaved dogs I encountered the entire weekend. I was a proud mama!

Showing our hometown pride!

It was a powerful thing to think about each person's story and why they were there.
A lot of people had signs and banners. This was my favorite of the day, from Team Epilepsyadvocate.com. It made me really emotional.
I know that Cole will never be society's definition of normal, but I have to completely prove myself every day. In another time, I would not have been allowed to live independently, marry or raise a family. I was glad to have a team that was there to walk for me too.
Cole gave up about 3/4 of the way through. Even though we gave him meds before it started, there were a lot of people and lots of excitement. Plus, no port-a-potties, seriously, for thousands of people they should have considered that all of the museums would still be closed! :) We did not make it all the way to the finish line. The entire walk was over 2 miles, but we did participate in the majority of it. We finished by a vintage carousel that has been on the mall since the 40's. It was good way for Cole to break away from the crowd.
All in all, it was a great day and we are so glad that it did not rain. Thanks to every one who came! Can't wait for next year!