Quirky

Life with Cole is kind of like being all of your childhood dream jobs at once. I am a Mommy, first and foremost, a detective (super spy), a doctor (I'm not a real one, I just play one on TV), a legal expert (lawyer), blogger (writer) and I am not sure how to throw Marine Biologist/Veterinarian or ranch owner in there, but we could give it a try!

Dravet Syndrome is so complex. There is not a lot of research and each kid is different. Cole changes so fast, that once we feel like we understand what his triggers are, they are different again.

So, you will find random displays like this through out our house.What? You don't cover your oven door with tinfoil?

The pattern on the door is a trigger for Cole. We wondered why he would have more seizures each time he was in the kitchen. We put blinds on the windows, a rug with no pattern on the floor, etc trying to figure it out. Yet, he still had more seizures each time he walked into our new kitchen. I figured it out on Friday! The pattern on the oven door set his brain off and overloaded it to the point that it just shuts on and off. He was stuck in front of it just repeating the same thing over and over again. I moved him, it stopped. SO-the reasoning for our lovely cover-up.
To the average eye, it just looks like an old, dirty oven door. *believe me, it is clean, those stains won't come off* But to Cole's eyes, he sees something more like thisand it makes him feel trippy like those pictures from grade school that you would put up to your nose and then pull out slowly so that a 3-D pattern would emerge. What happened to those anyway? Maybe they caused seizures? ;) Still looking for a better solution than our masking tape and tinfoil, but it is hard to make changes when you are renting. We have had great suggestions from friends and even considered buying a new appliance since this one is sub-par anyway, but it is not in the budget.

This used to happen with the skylight in our bathroom at our old house. We thought it was just being in the bath tub, since Cole is temperature sensitive. Over time, we got closer and closer to the real reason and figured it was when he extended his neck, looking up, and the shadow pattern from the textured skylight cover. Yet another beautiful tinfoil cover up was instigated. This process of elimination can be tiring. It has brought us closer and closer to helping Cole have as few seizures as possible, and we will do almost anything to prevent seizures. We still have to live life. If we were not so involved, we would not have figured out the light sensitivity and got his special FL41 glasses, etc. There is always a question in the back of your mind though, "What is causing this one?".

So yes, my son is quirky. He can't go outside, because he will get too hot or too cold, causing seizures. He can not be by a window, because natural light causes seizures. He can't look at my mom's rug, because it causes seizures. He can not ride in a car without tinted windows, he can not get too close to the television, he can not put his head all of the way back, he can not look at a solid blue screen, he can not do this, can not do that. BUT he can capture your heart and make you want to do anything in your power to give him the best life possible.

So, if anyone is interested in building me a house with a large room that is all white, with no patterns, with deeply tinted windows, soft washable fabrics, that we can spend all day, every day in...call me. It needs a built-in television that is the perfect height and has an anti-glare screen, It needs soft carpet in case he seizes. It will have to have lots of high outlets, so I can plug in his feeding pump and oxygen concentrator, but they can not be low enough for him to stick objects into (I swear this kid is going to electrocute himself). It needs good access to the front door in case the paramedics come, with wide hallways for when we get a wheelchair. A kitchen with wide granite counter tops for all of my cutting and prepping and that wonderful scale of his..and a locked door so he can not sneak food, steal my spoons, or try and play with my knifes. An indoor salt water swimming pool so he could resume his favorite activity. A state of the art heating and cooling system so we can change each room to be the perfect temperature. Heck, lets throw an air filter system in there to eliminate airborne illnesses as much as possible. No stairs. A big area for prepping and dispensing medications. A room that has a large, low to the floor bed, equipped with a seizure monitor, pulse oximeter and night vision camera to let us see if he is seizing. Add a comfy chair in that room for the nurse if we are dreaming. An attached garage, since going from inside to outside and vice versa is a hard transition for Cole. A fenced yard for our service dog. Okay, I'll stop now...but you get the picture.

Nothing is ever going to be perfect in our life. Heck, I have yet to meet anyone who truly feels their life is perfect even if they are one of those that seemingly have "everything". Life is a journey. This journey of ours just seems to have more twists and turns than the average road. Yet, we have been given the opportunity and privilege to keep Cole home. There are so many people out there whose children end up living in the hospital, or spending months at a time in ICU. The longest we have ever been there is a couple of weeks. Point is, we know our hospital stays are not over, by a long shot-but compared to others, we have had few. We have two friends that have been in the ICU in the last week for get this, strep throat. Yep, the red itchy throat that everyone gets...sent Dravet kids to the PICU! We also understand that there are more "quirks" that will show up. Who knows, maybe it will be the new curtains I finally put in the living room? At least we can keep him here with us, instead of in a care facility. For now, we are on the hunt, being detectives to make his life as seizure-free as possible.

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.

Aarilynne's Story - Life with Epilepsy and Dravet Syndrome

Going with the this weeks theme, I wanted to post a video that another Dravet family made. I think they did a great job, and Cole has the majority of the same issues, plus others. We are grateful to be able to educate others about Epilepsy and Dravet Syndrome. We get e-mails all of the time when someone has been googling and come across our website. We love it, because we have SO been there. Knowledge is power. Here is Aarilynne's story.

Spoon Theory

This week is all about awareness.

Here is an incredible story that a friend shared with me, which illustrates what we go through every day. Sometimes, the spoons have run out by noon. Occasionally, having to be a spoon counter for two is draining. The life where wandering Target is a luxury, instead of a spoon thief, is an honest to goodness dream sometimes.

This story shares a bit of how it feels to live life with a disability, but not look sick. Each day is about counting your spoons and using them appropriately. It explains a little bit about why we can't do what everyone else does, when everyone else does.

Always have a spoon in reserve, always use them wisely.
Enjoy!

A Whole Year

Sometimes it feels like we have been keeping this website forever. Hundreds of posts later, this week was our official one year anniversary!

I can not even express how life-changing this site has been for me. It has brought me some of my best friends, you know who you are. It has put us in touch with other families who have special needs. Some have become our second family. It was a catalyst in finding our Dravet and GEFS+ diagnoses. It helped us to raise money for Cole's new dog. It has done a lot of things, for me, and hopefully for some other people as well. A new friend told me this week that I was inspiring with my positive attitude and outlook on life...um, I hope she never goes through these archives! ;) There have been definite ups and downs in 52 weeks. This site also kept our family and friends informed with what we are doing for treatments, along with a cute video of Cole thrown in every once in a while.

Here is to many more years and many more friends! Thanks to everyone that supports us, or even blog stalks us ;) You are all warriors!

Another anniversary this week was my fixed heart. Two years, only two seizures. I would say that it was worth it.

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 ;)

This Is Your Captain Speaking...

We are going to be traveling through a patch of rough air. Please remain seated and fasten your seat belts.

Life has been a whirlwind the last few weeks. I can barely remember what day it is, keep on getting my addresses mixed up and have not had a full nights sleep in I don't know how long. Yet, we are finally unpacked (mostly) and things are starting to come together in the new house. It is starting to look like a home.

When we were on the plane, I was not so sure it was going to happen.

Leaving was hard. Our friend that took us to the airport, caught me in the front yard with an intense look on my face, standing still. She asked if I had forgotten something. I had to tell her the truth and acknowledge that I was trying my hardest to not cry and let the overwhelming emotion that I was feeling overtake me. I knew if I started, I wouldn't be able to stop. That house is the only one Cole has ever known. We have changed so much individually, and as a family there. We actually found it during Cole's PICU stay, when he was 7 months old. He learned to crawl, walk, and talk there. We celebrated all of his birthdays, Christmases, and everything else...there. He went from having one type of seizure, to seven types there. We started the diet, got the helmet, became hermits, got the Dravet diagnosis etc, etc, etc, there. It was a house full of history for only having lived in it for 2 1/2 years. The house went through a transformation, just like us. We gutted the basement to the cement floors and bare studs and watched it go through a metamorphosis to Cristine's palace. We miss her so much. Knowing that I had a first responder downstairs or just down the road helped me a lot with my anxiety during a trying time. I hope that whoever buys the house, will know just how much love was within its walls. I am sure our neighbors are grateful that we won't have the ambulance visiting our street on a regular basis and our barking dogs have been relocated ;)

As I got in the car, I shifted my focus to the plane ride. I had enough rescue medication in my purse to put an NFL linebacker into a coma. I had paid an inordinate amount of money for special oxygen that I was maybe going to need for about 4 hours. I had a letter from the doctor, the scale, g tube supplies, toys, crayons, KetoCal, and everything else I could think of in case we got stranded or something happened. We checked 7 bags! Not cheap ;) Brian knowing everyone in the universe came in handy and we got escorted through TSA. The x-ray agent had a problem with my die-cast metal pill crusher. I looked like a tool that could be used as a weapon! What? Everyday people don't carry huge pill crushers in their carry-ons? They went through all of my bags and I was totally fine with that. After all of the searching, we were escorted all of the way to the plane and sat down immediately. It went so much smoother than I had imagined. I had totally taken the prepare for the worst, hope for the best approach.

The worst did not happen. We did not need to use the fancy oxygen. Cole did have multiple small seizures and I did give him Klonopin, but nothing else. Being in a small space, having to sit still and be quiet was a struggle for Cole. The men in front of us were saints, because he kicked their chairs the entire time and screamed multiple times throughout the ride. They did not say a word or give me any death stares. Hooray! The in-flight entertainment was broken and I don't think that Cole was a good replacement. He would not stay in his seat, or stay on our laps. He would constantly be standing up or looking through the seats to the people behind us. He also had a manic episode that was most likely a sub clinical seizure. For over 20 minutes he vacillated between giggling like he was being tickled to screaming like he was being hurt. He would switch so fast in between the two that I am certain it was neurological and not just behavior. I was grateful when it stopped, because I was getting ready for that med-induced coma I had prepared for. All in all, it could have been much worse. I had visions of having to load him up with meds and asking the captain to land the plane. A loud, crazy toddler is something that happens on every flight. This time, we were those people.

I think that grandma suffered the worst of all of us. The woman is amazing. If we ever do this again, I am going to recruit more people. She really took the brunt of this move. From the travel to sewing curtains, she did it. Thanks mom! Anyone want to sign up to travel with us to UT this summer? ;) Anyone? Anyone? Bueller? No one? Really? Maybe I'll have to hire out! Hopefully he will have a Miami trip under his belt before we try the cross country thing again.

Cole has not been out of our new house since we arrived. We wanted to let him get used to it with both of us here. Brian starts his new job tomorrow, so I will start to slowly take him out and see how he does in public. Rescue meds only twice so far. It is still confusing to us that he is not having more tonic-clonics. We'll take what we can get though and for right now, that is more small seizures and less drama. I'm not holding my breath, but I must admit it has been nice.

Up ahead, some more rough air, but a beautiful view of the clouds.

Landed

We are here. We are alive...and we finally have internet!

Things are crazy as ever. Cole is actually doing better than expected. He has only had one major seizure so far. Lots of small ones, but less than Utah. We're kind of shocked, but grateful. Elevation could play a bigger part in his seizures than we realized. Behaviors are not so great, but everything can't be perfect!

We are settling in. I'll make a better update later, but until then I am going to unpack more boxes.