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

Purple Day 2013

Hey, we are still alive!  Still surviving.  The roller coaster has turned into something like Montezuma's Revenge at Knotts Berry Farms (do they even still have that?).  You know the one that goes upside down and backwards at the same time?  Not really even up and down, just face contorting immediate g-force, making you want to throw up.  Yet, you are having a great time on the ride :)

We went back to Miami.  I will catch up on that later.  We have changed, added or dropped meds more times than I would like to count in the last 4 months.  Still no significant change in seizure control.  Cole continues to seize every day.  The drama in December, is just commonplace around here.  Four or five major generalized tonic clonics, that last about 6 minutes a piece, during one day is the new normal.  We consider it a good day if there is only one big daytime seizure that is over a minute.  Night time has become intense, with around 9 big seizures that last about 45-90 seconds is average.  The screaming, look of pure terror and having your baby be inconsolable throughout the night is just torture some times.  Yet, Cole keeps finding reasons to smile and laugh every day, so we do too.

Epilepsy is a condition full of unknowns.  Dravet Syndrome has even more unknowns.  Please wear purple tomorrow, March 26 to raise epilepsy awareness.  It is underfunded and people are not educated about it.  There are still a lot of countries where people who have epilepsy are truly believed to be possessed by evil spirits and are shut out from society.  More people have epilepsy than Breast Cancer, Parkinsons and Cerebral Palsy combined!  Wear purple and talk about it.  Maybe together we can find a cure.

I would love to have your pictures.  Send them to me through e-mail, Facebook or text them to me.  Last year we had so much love and support.  Cole needs it even more this year.  Can you believe how much he has grown since last year?  Look at my hair!  Wow, it is amazing what a year can do.  To read the story about Purple Day and to see the other times I have written about it, go here.

Purple Pictures

We had a lot of participation for Purple Day this year. I loved getting pictures throughout and seeing my Facebook explode with Purple Power. We're going to have to snag a family picture on Friday, before our Dravet event. Keep sending your pictures, we love them!

From working out, to working at the dentist office. From service dogs to sisters. Friends, family, at least 9 states represented. Balloons, pedicures, and one awesome pair of sparkly purple corduroys! Hopefully they all thought about epilepsy a lot. Hopefully you thought about it too. International Epilepsy Awareness Day was started by a girl that most would call "little". She has made it into a worldwide movement. Here is our little piece of that.

Some would say...Why the purple? Why the hype? This is why.

Epilepsy sucks. Talk about it. Maybe one day we can find a cure, together.

It's Here!

We are wearing purple. Are you?

An Illustrated Guide to Our Week

Warning: I can't make this stuff up. You will laugh, you may cry.

Sunday: Slugger ate one entire wall of Cole's Lightning McQueen tent. Awesome. Painted my toes purple in anticipation for International Purple Day. Cole utilized his REAL pillow pet.Monday: Cole wakes up in a great mood and proceeds to use my yellow heels as accessories. "Mom, look at my earrings!"
Cole goes to school. Nurse goes home. We go and get my kitchen knives sharpened, had to wait 2 hours when they initially said 20 minutes. Come home and have this, complete with over a minute and a half of O2 in the 40's. Goal to make tomorrow better.
Tuesday: A day for the books. Cole literally was awake maybe 2 1/2 hours all day in between seizures. Even when he was conscious, he could not stand up and I found him curled up in a ball or laying on the ground multiple times, because he did not have the strength/equilibrium. Cancelled a fun play date with friends. Had to miss therapy (and still pay for it). Our air-conditioning breaks. Have temperature sensitive child. Got to make trifle! I hear it was good.
Come back from Relief Society and get this on my screen. Computer crashes, dead as a doornail. Lose all apps, movies, photos, documents...everything.
Wednesday: My new cookbook finally arrives, after I pre-ordered it months ago with a gift card I have been saving for almost a year. Love Pioneer Woman. Have been reading her blog years and years. Takes me back to my roots and major plus, it is really funny. No nurse.
Our landlord is not known for spending money (read: major tightwad). We have nicknamed him Master of Creative Maintenance. His favorite fix is duct tape. Alas, his solution to our rotting floor? Slap parkay patterned duct tape (aka vinyl tiles) over the top of the existing floor. Oh, and they are a lovely shade of orange. You would not believe his first option. I just look at what Cole has dubbed "The Squares" and laugh. We could seriously base a sitcom around his fixes.Thursday: No nurse, again. This is a Weeping Cherry Tree in my backyard. I gave my bestie a matching one for her 30th birthday last year. I told her that it signified my new home, since Cherry blossoms are a big deal around here, and that I was sad we do not live close to each other any more. She loves to garden, so it was a hit. However, I looked at this tree on Thursday and burst into tears. There are beautiful blossoms right now, but the imagery was fresh. There was lots of weeping on Thursday. Another Dravet child has been taken home. This time, a child of someone I knew. Someone who doesn't live very far from me, and this child was just a little younger than my own son. It hit way too close to home. Week is weighing on me. Make new goal for a better tomorrow. Hug my baby.Friday: Decide that Cole is doing good today, so stop by the farm to make up for missing it on Tuesday. Here is Cole with some new piglets. Slugger alerts like crazy and Cole gets so overstimulated he doesn't want to stay long. Sure thing, we need to go to therapy anyway to make up for missing Tuesday.
Get to therapy, Cole has a long, weird seizure where he chokes me in the process, poolside-right before the session starts. Doesn't even get to dip his toes in. Still have to pay :) Air conditioning breaks, again. Take Cole to the park, and then we all eat dinner (at a restaurant) with friends. Seriously people, we could not figure out if that has ever happened before. We may have acted really weird/excited about it.Saturday: Rain gives us some relief from the heat. Convince landlord to break down and buy a new air conditioner. Cole has a great day. Try to purchase the right belt for a dress. Now have to go through the process of elimination to decide which is the one. Feed the missionaries. Go to Hunger Games with a couple of friends while Cole and Daddy chill at home.We start all over tomorrow. Except that we have a lot of epilepsy awareness on the horizon! Remember to wear purple on Monday. The National Walk for Epilepsy is Saturday and we get to see some of our Dravet friends on Friday night! New/old goal-embrace today while hoping for a better tomorrow.

Purple Day 2012

We have been celebrating Purple Day for a while around here and I have mentioned it on the blog a time or two before.

This year, we are actually going to attempt to go to The National Walk For Epilepsy. Cole has been doing much better at handling the overstimulation of being outside and if the weather cooperates-we will be there! We are so excited to have many family members who will be joining us for this event.

One of our great friends, from Haley is My Hero, has made a video this year for Purple Day that includes a lot of our Dravet buddies. See if you can spot Cole and Slugger!



Wear purple on March 26th and support people with epilepsy just like Cole, Haley and me!

Purple People Power

We had a great weekend.The Purple Meet and Greet was fantastic! We actually stayed much longer than anticipated. There was a little break in our chaos and we had a wonderful time...in between trying to chase Cole around and convince him that he could not play the piano, yell loudly or speak into the microphone.Life is an adventure with him. Lucky for us, no one rolled their eyes or stared daggers at the people whose child was going up and down the aisle while very important speakers, including the president of the Epilepsy Society of America, were speaking.
I got to see my friend Jennifer, from Living For GraceHobo, Melorah's service dog was nice enough to let Cole practice with him for a few minutes. We love the opportunity to expose Cole to service dogs in preparation for his new dog in October. With all of the craziness of moving, I have not written yet about Starburst, our friend Ben's dog, who came to visit us before we moved. Cole warmed up to Hobo eventually and took a few passes up and down the hall, doing really well with holding the short leash and staying by his side!Cole even got to hang out with our local girl Hayley, (if you can call almost 3 hours away local) from Hayley is My HeroHer mom graciously let Cole play with her camera for a half hour or so. I am sure there are some interesting pictures on her memory card now ;)

We are so grateful to be involved with groups like the IDEA League. Also, on the same night a wonderful gala, Ciara's Butterfly Bash, was being held in Connecticut by the Dravet Syndrome Foundation. Hopefully they raised lots of money to help with research for Dravet Syndrome. We are lucky to have two great support groups for something so rare. These people have really become like family. We greet each other with hugs, even if we have only met in person once before and probably won't see each other for another year or more. It just makes it that more special to get to spend time with them. We're glad that the 3 to 4 inches of snow predicted for the walk yesterday, just turned into a little skiff. Hopefully, they all raised awareness for epilepsy and helped a few people understand that is affects more people than Multiple Sclerosis, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined, but has little funding. Plus, there are rare forms, like Dravet Syndrome, that have very little research available, which makes it even harder to treat. It is great to go to these functions where you see other kids with Dravet, but it is also hard when you recognize that not a single older child there was independent or high functioning. This is the best time of Cole's life right now. It prepares us for the future, but also helps to put things into perspective.Thank you to all of those who participated in Purple Day and the National Walk for Epilepsy. We really enjoyed getting to see some of you here, in our new home town, and missed those who could not make it. Especially those of you that are in the hospital right now, HUGS! Together, we can find a cure.

*Don't you just love our 70's Love Lounge fake paneling?*

Tomorrow!

By now, you all know about Purple Day. Wear purple, and tell people why you are all decked out! I'll have purple toenails, a purple shirt, an awesome 3E Love purple hoodie, my beloved purple trench coat and my purple purse! What will you wear?

Send us your pictures to epilepsywarriors@gmail.com. The winner just might get a prize! Go crazy- purple hair? ;) It's for a great cause, raise awareness! Together, we can work for a cure.

We're Just Sayin....

Check it out-

Photo and video editing at www.OneTrueMedia.com

I've talked about Purple Day before. One of our dear Dravet friends, Ryan, has been chosen to be a face of Purple Day this year! Show the love for us and all of our friends. Wear purple on Sat!

BTW, the song playing in the background is from one of my favorite artists, Mindy Gledhill. Here is the link to the Hourglass video, featuring Robbie Connolly from Fictionist.

P.S. Please ignore the various unfinished projects around my living room, including curtains that I am in the process of hemming, frames, the mirror that still needs to be hung, etc! We've only been here less than two weeks ;)

Wear Purple

Purple Day is a day that is international to recognize and promote epilepsy awareness. March 26, Purple Day was started in 2008 by a nine year-old girl from Canada with epilepsy. You can read more about her here.

It's a grassroots effort dedicated to promoting epilepsy awareness. Epilepsy affects over 50 million people worldwide. 3 million of those are in the United States. That's more than Multiple Sclerosis, Muscular Dystrophy, Cerebral Palsy and Parkinson's Disease combined! I remember when I heard that statistic for the first time, I was shocked.

I have my little purple ribbon pin from the Epilepsy Association of Utah on my purple trench coat. It's just a little reminder to me that as much as we can talk about it, the more comfortable people become with the subject. There is lack of information and so many misconceptions about epilepsy. It lacks serious funding due to its poor awareness. So many other disabilities and struggles have incredible fund raisers, foundations and backing from legislators. Hopefully, this will change. We need to spread the word, like Cassidy, she's a warrior. Wear purple!