Drama with A Capital D

Occasionally I joke about how lovely it would be to actually be bored. Like, how good it would feel to have an empty mind and just want to be entertained?

That never happens around here. I've said it before-we are never boring.

This week has brought an onslaught of drama, which I personally can not stand. Yet it seems to follow us around every where. Maybe I should sell our life as a soap opera? Except without the intimate relationships. Note to self: possible way to pay off medical bills.

The last seven days has brought three trips to the people hospital and one to the animal one. Good news-Cole does not have gallstones or kidney stones that they can see on ultrasound. His spleen is enlarged, what does that mean?

In the last three days alone we have had a nursing fiasco, 2 tonic-clonics within 3 hours of each other (so not normal), possible infection, an ER visit for Slugger (more on that later), and the list goes on. We also got to visit the park and ride a carousel and the train, until Dravet made us pack up. I need to snag a video from our friends. It was a good time had by all and we were the entertainment :) We also got to hold brand-new adorable babies. Oooh, I also turned in my Mother's Day present and got a pedicure, it was lovely! See, rainbows.

Really, if you want a circus show...come on over, it's free! :)

I think that I am going to go to my "happy place". It looks a little like this. Unfortunately, just hanging out in my head means that I still can't get a tan :)

Facelift

Like the new look?

I saved my pennies for almost a year and then was on a waiting list for three months! I am really happy with the way it turned out.

Also, new name! You can now reach us at www.epilepsywarriors.com

So professional :)

Tell me if you like it and what would make it easier to navigate Warriors.

XOXO

Plan E...or Maybe F or G

So I talked a little bit about how I like to plan ahead, but remain flexible....yeah.

The last couple of months have been kind of dark. We always try to find the rainbow, but it took a lot longer this time. The storm has been raging to the point that there was no light to create something beautiful, so we just had to be 'thankful for the moisture' (inside joke).

My own Plan A, B, C, and D have been thrown out the window. I am no longer going back to school. Turns out, my eyes have not completely healed and if I put more stress on them I could do permanent damage. School is total stress on the eyes-looking at the board, studying, computers, the works.

Plus, Cole kind of took a nose dive right when I thought that we had things figured out, again. It seems if I go two blocks away from him, something happens (except for that one time I ran around DC with my cousins for two days...THAT was awesome and a total blessing). I had a nurse quit and I have not gotten to the trusting level yet with the new one. I am not going to nanny this summer and with no school-that leaves more time for just me and the little dude. I am kind of relieved. I hate being away from him for too long.

Cole's Plan A is going alright. However, this incredible phenomenon, antibiotics, has thrown us another curve ball. Cole was sick for a solid month with fevers and random infections. He had to go on two rounds of heavy antibiotics to clear them up. Yet, now that they are over, he is out of school so he isn't picking up anything new...and he is having a honeymoon period. Almost no major seizures for a week now! They will come back, but it is so strange that antibiotics do this to him. Other Dravet parents have noticed it too. So, no implementing Plan B for now.

The good spell came at just the right time. There has been more chaos than usual in our little life. Brian's best friend was tragically killed last week. It was a complete shock to our systems and we ended up making a split second decision to get into the car and drive to Alabama for the funeral. It took 4 days, since we can only go so far with Cole. However, he tolerated it like any normal 4 year old and did not have ANY major seizures. Say, what?! He was in the car for 7 hour stretches and had no problems, when just the week before he was having tonic clinics daily doing nothing but being at home. Just mind boggling. It was our rainbow, that we could peek at through the midst of the pouring rain.

Sometimes you just have to throw all plans out the window and just learn that no matter how much you want answers and structure, the only thing you need to learn is: how to look for rainbows.

Slugger's Story

I first heard about seizure alert dogs from my grandmother, who had seen a program on television about them. It turned out that they were really expensive and agencies only gave them to adults who had lots of seizures. My epilepsy was fairly controlled at the time. We never really talked about it again.

Fast forward-I went to college and this same grandmother mentioned that I should get a service dog to live with me. At this point, the internet was up and running so I did a search. There was not a lot of information out there. The more I thought about it though, why would I want a dog with me all of the time? I was having a hard enough time talking about my seizure disorder to potential friends and prospects. Taking a dog with me everywhere was like pasting a sign on my forehead that said, "She's different!" At this point in my life I was trying to prove my independence and fit in, not stand out.

Fast forward, again-I became a social worker and decided that I wanted to apply for a service dog that I could take to work with me, to help my patients. As a bonus it could live with me, and maybe alert to seizures. I sent in my application and was told the waiting list was 5-7 years.

Time moved on and things changed. I never reached the top of the waiting list since I was rarely having seizures and there were others that "had a greater need". I understood that, but wasn't that what a waiting list was all about? I resigned myself to the fact that I would probably never be able to get a dog to help people I worked with and to possibly help me.

Cole came along and I started thinking about service dogs before we even got his Dravet diagnosis. I called 6 different agencies, and not one of them would place a seizure alert dog with a child under 5 years old. I was so frustrated. I wasn't sure if Cole was going to make it to age 5 (sad, but true). I went to the Dravet conference and saw multiple service dogs there. One person that I made friends with had just finished fundraising for her son, who was the same age as Cole, through 4 Paws for Ability. I had seen their website during my search, but they were in Ohio. I lived in Utah. I had not really delved into their mission. She explained to me about the fundraising and that they could place a dog with my son. That was all I needed.

I came home from that conference with an overwhelmed feeling, having just caught a glimpse of my future. I did, however, have a fresh resolve to get the very best for my son. I single handedly organized a fundraiser and I was not going to look back. To learn more about that part of our story, go back to the fall of 2010 in our archives.

We raised our money, got approved and had to hurry up and wait. Turns out that we had to wait longer than anticipated, but Slugger was worth every tear shed and every day that I thought, "I could really use that dog right about now!"

We finally got to meet our furry family member in October 2011 at 4 Paws for Ability. There is a lot of emotion that I still feel, 9 months later when I think of that day and this video.

We gained many friends through our 4 Paws journey and had a wonderful, tiring time at training. If you want to read about our time at training, click here

Life with Slugger has not been easy. It is really like bringing another baby into the family-one that sheds! All of that training, all of those commands have now become second nature. There are still bumps in the road, but he truly is the perfect dog for Cole. He is so patient and has the perfect personality to fit in with us.

To those of you who are thinking about getting a service dog, I say-Do it. It will not be easy, but the rewards that you get are a totally worth it. Slugger has brought so much to our family.
So even though he does dumb things sometimes and there are days when I wish that I could shave him, he is my baby's best friend and guardian angel here on earth. I would not have it any other way.

Seriously?

Took this photo after I realized that my shirt had been on inside out...all day. Yeah, some people's children.

The Incredible Journey

I got a fortune cookie last week that said, "Life always gets hardest right before the summit".

We are on a journey. A beautiful, tiring journey. Interspersed with the weeping, wailing and gnashing of teeth is great stuff like getting to go to the movies together. Support from our friends around the world, and a little boy who makes everything worth it.

A Lot Of...

Peeps,

We have been doing a lot of this lately. I can't count how many times I have had to go back and forth to the hospital for labs, procedures or appointments.

We have also been having a lot of this (post-ictal).
And this.

Have no idea what is going on, as usual. Just know that I need an attitude adjustment and might go find it in a bucket of ice cream.

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!

Return To Oz

Has it really been almost a month since we were there?  Seriously, kids-things have been super crazy around here.

Cole has been sick since May 7th.  Not during cold and flu season, weird with a capital W.  Hasn't been to school more than a couple of days all month, so he isn't catching things from the germ factory aka preschool.  Possibly caught something on the plane, something else at the hospital, something else on the plane...who in the heck knows.

After a round of antibiotics to quell symptoms of concurrent infections-sinus, ear AND eye...he is still ill.  Had a middle of the night seizure for the first time in a year and a half.  Had two major seizures within 6 hours of each other.  More tests, more tests and no answers yet.  SO-with my little adventure last week into the world of blinding migraines and sick Coley, our world has been more chaotic than normal.  Which is to politely say-unhinged.  I know that you were all just on the edge of your seats waiting for my update, right? ;)

I will tell you about it, before I forget the details.  Like how the paparazzi came to the airport and everyone was taking pictures of Slugger.  Or how Cole and Sluggie got invited into the cockpit.

Florida was it's usual self.  Full of stress and serenity.  Prompting lust towards places where palm trees and plumeria thrive.  Silent worship of the waves and their wonder.  I wish that we could live on my in-laws lanai.  We could seriously be okay with being there all day every day.

We saw a lot of this....

Cole had a major seizure almost every single day we were there.  Slugger did not alert for any of them.  He was always ready to come over and do his job of comforting Cole though.  It still chokes me up when my baby starts to wake up and slowly strokes his best friend.  He looks at him like, "Oh, good.  You're here."

I, myself had some undiagnosed issue which I am attributing to a malfunction of my kidneys, as they are prone to break down at the most inopportune times.  I keep trying to send them love notes and tell them that I need them to cooperate, but they continue to refuse to listen.

We actually almost ended up going to the hospital, before we went to the hospital.  Confused?

We called the paramedics, who would have taken us to a new hospital that did not know us and had no idea about Dravet, so they would have admitted us after being in the ER for hours.  Springing the joint in time to take the 3 hour drive to Miami to make our appointment there would have been virtually impossible.  Thank goodness Cole's brain got the memo, just as we were ready to pack him out the door and in to the fun wagon.  Relief doesn't even begin to explain it.

While we were in Florida, Cole started having new presentations with complex partial seizures.  Only his face muscles would convulse, and there were no leader seizures.  He had more tonic-clonics in one week than he has had in years, maybe ever.  He also had ictal vomitting (during seizure, not after like usual) and it is SO scary.  You need to make sure he doesn't aspirate the vomit into his lungs.  His body is not concentrating, as there is an electrical storm in his nervous system.  So, while you are trying to manage his oxygen, keep him safe, stabilize his body temperature, administer meds, etc you are also having to protect his airway and your mother in laws carpet.  Dravet can make a multi-tasker out of the best of them.

I feel like we are the motley crew from the Wizard of Oz, all seeking new and improved things from the Wizard.  In this case, the experts at Miami Childrens.  In the end, the answer is always within us, and we know all along what we need to do (have resiliency and faith).  Sometimes we just need a little help to remember that we can conquer our fears with the right attitude.  A reminder to have courage, use our brains and to have our heart guide us.  Miami is a wild and mysterious place.  The road was not made of yellow brick, but the journey to get there was treacherous.  Each time we go back, I think of the Tin Man, Lion, Scarecrow and Dorothy.  Hopefully we never get picked up by a hurricane, Florida's version of Kansas tornadoes.  We always meet great people aka good witches while we are there, but Dravet is like the Wicked Witches....if I could only figure out how to melt it or smash it with a house.  By the end of the trip, all I want is to get home.  Maybe I should wear red shoes next time? :)

 We did have some fun while we were there in between all of the seizures.  We spent a lot of time in the pool, and eventually we finally made it to the beach.  Slugger was a little wary of the ocean, but got used to it quick.

 We had some good laughs and Brian even got his early Father's Day present.  All he wanted to do was go water skiing...so I finally sent him to a place that every single time we drive by he says, "That would be cool."  This is his way of saying, "I really want to do that."

After almost 6 years, I finally convinced him that it was okay to go and have fun.  Seriously, it is ridiculous trying to get this man to do something for himself.  Pay $25 and a cable will drag you around for an hour, no boat.  Happy husband.  I can't even buy him dinner for that much in D.C.  He had really sore legs the next day, but he said it was totally worth it...with a smile on his face.  Someone even called him "gangster" for skiing when every other single person there had a wakeboard.  He thought that was awesome.  Points for Nik!

We got to see some of our friends, our family and we celebrated Mother's Day.  Even attempted to take the boys to church, but seizures stopped us.  Didn't stop me from attempting to take a picture of my dapper lovelies ;)  

I have a love/hate relationship with Florida right now.  We only go there for an ulterior motive...to seek medical attention. It is a total bonus that our family lives 3 hours away from the best doctors in the country for our son.  So, I love that we get the opportunity to see them a couple of times a year, when it would not be feasible otherwise.  I love the ocean, I hate that I can't really enjoy it when i am there.  I love that we have an awesome team of doctors and we get to meet other Dravet families.  I hate that we have to go so far to do it.  Back and forth, back and forth.

I guess I am kind of like Dorothy running away with Toto to save him.  Claiming that she is doing every thing possible to protect her best friend when others tell her she is dreaming.  However, if she never would have tried to save him from her evil neighbor, she wouldn't have had an incredible adventure.  Cole is my adventure.