Happy Haunting

We almost boycotted Halloween. Cole can't go outside. He can't have candy. He doesn't understand the concept of Halloween yet. So we were just going to skip it.

I think we had images of Thanksgiving in our mind, from last year. Cole started seizing in the car on our way to the family party. We stopped in the driveway, Brian jumped out of the car and rushed an explanation about why we were backing out, and we headed home. Cole stopped seizing on our way back. This is when he could actually be outside and was not yet sensitive to light. Eventually, I took care of the post-ictal boy and sent Brian back to have a little quality time with his family and he brought me home some food. YEAH, we didn't want to have another holiday like that ever again. However, this is our life and the stress and excitement that comes with holidays inevitably brings on seizures. BUT - remember that goal to be more normal? We chose to make the best of things this year. We let Cole answer the door 5 times, and that probably was a little much, but he was having so much fun!

Our lucky neighbor got two pieces and an "I love you!" So sweet. After, we just put this sign on the door. The doorbell alone creates so much excitement in Cole.We took something we already had, the SPIO suit and just built on it. I ordered a snorkel mask and fins that he can eventually use in grandpa's pool and we had a bona-fide scuba diver! We asked some good friends if we could bring Cole over to their house and they could give him some small toys that I had purchased. They went above and beyond and purchased some of their own ;)Here is Cole saying, "Happy Halloween!", just like we had been practicing all day.So yes, our fall was not that fabulous. It did not include hay rides, pumpkin patches, corn mazes, costume contests, pumpkin carving, apple picking, cider drinking, cookie making, parties, or adorable pictures in the leaves. But last night, thanks to some special people, Cole experienced Halloween...in his own special way.

P.S. Sorry grandmas and grandpas that we couldn't post Cole actually saying "Trick Or Treat" when he got to the door. Mommy was trying to operate too many cameras at once and it is stuck in our video camera!

Cole's First Snow 2010

Cole was so obsessed with the snow today! He has constantly been unlocking the door and running out on the porch calling for Santa. "Santa, where are you? Oh, Santa?!" It is hilarious. We try to keep him out for under 5 minutes, but as you can see at the end of the video, even a short period of time can cause seizures. He sure is cute ;)


P.S. Ignore the outfit, it's Daddy Chic!

Mahalo

We would like to thank everyone that has donated in Cole's behalf. We still have some more funds to raise for our training and there are always ongoing medical expenses like taking Cole to Miami for treatment and medication not covered by insurance. However, without the help of ABC4 and KSL Channel 5, we would not have been able to make this dream of a seizure alert dog come true. We are so grateful for people, who have been reading our blog for a while, taking interest in our story and helping us share it. We know that Cole has touched many hearts. He touches ours everyday.

Here are the videos from the newscasts

Video Courtesy of KSL.com

We (YOU) Did It!

We have reached our goal for 4 Paws! All of the money on the fundraising page will go directly to their program.

If you want to contribute to our travel expenses for our two week training in Ohio, our visits to Miami Childrens Hospital, or our medical bills, you can use the PayPal donate button on our sidebar.

Many thanks!

SO Close!

Thank you SO much for the amazing support! Hopefully, we can bring Cole's dog home in 6 months or so. It needs to be trained specifically for Cole's needs. The wonderful people at 4 Paws For Ability will start the match process to see what dog is going to be the best for Cole once we reach our goal! Check the fundraising page to see our progress! If we have met our goal and you still want to donate, there is another option.

If you want to donate to help with our travel expenses, expenses of having a service dog, or to Cole's medical bills, you can click on the PayPal link on our sidebar. You don't need an account! We will put the money directly in Cole's custodial account that we set up at Wells Fargo earlier this year.

We are so grateful for the family, friends, colleagues and strangers that have helped to make this dream come true for us.

Cole says, "Thank you, much!" ;)

Walk

We just wanted to remind everyone that our walk, "Paws To Help" is this Saturday at Liberty Park in Salt Lake City at 11:00 am. We'll meet at the North East corner at the large pavilion. We have chosen to make this walk free, with no registration fee. It will be short, with a balloon release at the end. We will also have people from the Epilepsy Association of Utah there to answer any questions you might have. Come and support Cole and raise awareness for Dravet Syndrome and epilepsy. We are not sure that he can even come because the weather is predicting to be cold and he can not regulate his body temperature. Bring your sunglasses, and if you want, your dogs! If you want to donate, you can click on the link on our sidebar. It will take you to Cole's fundraising page. This money will go directly to 4 Paws For Ability and is tax deductible. We are raising this money in their behalf to support their mission to provide service dogs to those with disabilities.

The other $3,000 that we are hoping to raise separately, is to go towards travel costs for the two weeks we will need to spend in Ohio for training. We are about half-way to our goal and want to thank all of you that have donated so far! It means so much to us, and to Cole. To learn more about why we want a service dog for Cole, you can go here.

Holter Top

Cole is sporting a new style today. We went in early this morning to the cardiologist (after being up until 11 on a post-Versed high) and got hooked up to this fancy machine.Cole's heartbeat will be recorded for 24 hours. This is to rule out Long QT Syndrome, another factor for that nasty nemesis SUDEP. Another Dravet child passed away in her sleep this week. She was only one day away from turning two years old.So far, Cole thinks the Holter is cool. Hope it stays that way! ;) The recording box is kept on by this little backpack, or as we are calling it, "Holter top". You never know, we could start a fashion trend. The latest and greatest accessory!

Brave, Or Just Asking For It?

I decided to be "brave" the other day and take Cole out in public. I know, I know - what was I thinking, especially after last week? I took Cole someplace where he was around someone that had a small cough. That turned into 101 fevers for two days and 3 tonic-clonic seizures in need of oxygen and rescue medication. We have slowly started to accept that we can't keep Cole in a bubble forever, so even though it was a little bit of extra work, he had fun being around other children. We know people who take their Dravet children on flights across the ocean, hiking, swimming, etc. They have just learned to accept that seizures are a part of daily life and choose to "live" it. We are inspired by them. So I made a goal to be more "normal" this week.

I got an e-mail announcing a one-day sale where everything in the store was 40% off, that day only. Cole needed jeans and I wanted to test the SPIO in public, so I decided to take a risk. I waited until the late afternoon and asked Brian if he would meet us there when he got off of work. I can not even remember the last time I had Cole in the mall, and I was ready for anything - so I thought. I set off armed with the iPad, sippy and stroller. Cole did really well! For about 20 minutes. The place was a madhouse. There were people and strollers everywhere! Brian came and I started to stand in line. Cole soaked himself, as he has been doing on almost a daily basis lately (blood sugar issues?). Brian changed him in the dressing room and kept his wet jeans off. I am still standing in line when I see a little boy in a flannel shirt and black spandex pants (the bottom of the SPIO) and no shoes, running around the store carrying part of a display! I'm sure people were thinking, "Where's his mother?" HI! It's me...over here, in line! The one who doesn't have her act together! At least he wasn't screaming ;)

I told Brian to just wait for me to finish so we could put some of the dry pants I was going to purchase, on Cole. I was in line for 45 minutes! At this point, any toddler is having problems being stuck in a store. Especially one with sensory issues. I finally get up to the counter and pay. I catch Brian in the corner of my eye, he has Cole in his arms and says, "Let's go. NOW!" I grab the bags, find the stroller in the midst of the chaos, and we start to run. No one really notices that Cole is seizing, because he is still conscious at this point and only jerking every 15 seconds. We book it out to the car and I prep the Versed on the hood.

After a few minutes taking care of things in the back seat, Cole started to come out of his post-ictal state and was drugged up. We decided to switch cars and have Daddy drive the boy since his long arms can reach back to the car seat. They headed towards home. As I was pulling out of the mall, someone rear-ended my car! It could have been a lot worse. There was minimal damage to the car and no one was hurt. We could have been a lot farther from home. I could have been alone. I just think that I am going to need some more time before I try to be "normal" again. What a slap in the face, to remind me that just going to one store for a sale, is a crazy idea. Having a controlled environment is so much easier for me and Cole. However, easier is not always better. I don't think we're ready to go anywhere intense soon, but we'll try again in a week or so. Maybe the grocery store?

Flotation Device

Cole somehow found the cupboard with all of the swimming supplies at my parents house. He decided to put it all on at once then exclaimed, "Going SWIMMIN!" It was really cute. He constantly put those pink goggles on during the day, calling them "glasses". He keeps us entertained.

I Forget

My mind hasn't been the trap it used to be. I still have a bunch of random facts floating around in there. Like how Arctic Char is a cross between salmon and trout and what job my old college roommates' sister used to have. Yet, I can not remember the measurements to "Cheese and Melon", a recipe that Cole asks me to make almost every day. I could blame it on lack of sleep, seizures, or being a mom - my mind never came back after pregnancy. I used to be able to stand and give a wicked presentation full of facts and information. Now I am lucky if I remember everything I wanted to talk to a doctor about...and that's when I bring my little book full of notes I have been making for weeks! I even went out into public a couple of months ago...without my bra. I did not notice for hours. My friend who was with me reassured me that it did not make a difference ;) Good thing I was wearing a cardigan.

I forget other things too. I forget that I like pumpkin ice cream so much. I forget that I like things that sparkle. I am a sucker for beaded anything. I think that is why I like watching Divine Design so much. Crystal chandelier in the bathroom? Yes, Candace-please!!! I like things to be clean - I don't forget that, just ask Brian. I apparently forgot to clean one of my toilets for the past few weeks. It is one that we rarely use because it makes a lot of noise when you flush-I went to clean it yesterday and it had a pink ring around it. Apparently, I skipped that one the last time I was doing my weekly cleaning. Whoops! Each time I stand by the ocean, I remember that I have some sort of instinctive pull to it. Yet, I forget once I get back to my home in the mountains. I forget to nurture my spiritual self. I don't forget that I love to cook and entertain, I just don't do it anymore. I forget that I like to be creative. I don't scrapbook, draw, paint, or craft; but I like to complete something, sit back and say, "I did that!".

Brian forgets that he loves to run. He forgets that he likes music. He listens to so much NPR that you would never guess that he was known in a previous life as DJ Powerhouse. I doubt that he will ever forget that he is a Ute fan. He forgets to take time for himself. He forgets to hang out with friends. He even forgets what is like to be alone with me. We were walking down the street the other day, without Cole, and he was freaking out-not letting himself enjoy it.

Sometimes we forget what it is like to be "normal". People sit down at restaurants? You mean, you don't drop $180 for Versed on a regular basis? What would it be like to go to the grocery store...during the day, and not at 10:00 pm? Our conversations can be awkward and revolve around terms like tonic-clonic and dysautonomia. We forget that the majority of people have never heard of these terms, and really don't want to know. We just can't help ourselves. It's our life.

So, if you are acquainted with our "before" selves, we're sorry that we have forgotten how to be good friends. We're sorry that we have forgotten how to attend special events, send thank-you cards, show up with a meal if you've had a baby, or a bunch of other little things along the way. Sometimes, it's all we can do to remember to give Cole his medicine and make it through the day. You, however, are not forgotten - though it may seem that way sometimes.

Fan

It's a good thing Cole does not know the difference between the red team and the blue team right now. We'll let him choose for himself when he gets older. Although, I have this sinking suspicion that I have another Ute fan on my hands. He wants to be EXACTLY like his dad. Oh, well - at least I can say that I tried ;)

Here is a video that Brian took a couple of weeks ago. Cole loves all sports, but he has a special place for football and basketball just like his daddy. He automatically starts to cheer if it is on the screen and then asks the next day if we can watch "the game". Good thing the Jazz have started their pre-season; we can't wait to have "games" to watch two or three times a week!

Make an on-line slideshow at www.OneTrueMedia.com

Paws To Help

Cole is making a plea for help. He can sometimes be a prisoner in this life - in his own body and in his own home. We have found a key that might help to unlock some of the doors that were closed to him before. It's not a crazy surgery or a new medication...it's a dog.

Service animals have been around for a long time and most people associate them with those who are blind. There are many types of service animals, but the one we are specifically interested in is called a Seizure Alert dog. This dog could change our lives in SO many ways.

Let's be honest, the last few years have not been all sunshine and roses. We have looked for the bright spots and have cherished each "good day" along with the bad. Cole's seizure types have increased dramatically from the two types when he started having seizures, to over 6 different types that we can classify right now. His brain never gets a break as it is usually actively seizing, preparing to seize, or recovering from a seizure. Through this all, Cole has beaten the odds and learned how to walk and talk. In January of this year, he could not speak and now he is forming sentences. He continually impresses his therapists and has a very charming personality. However, there has already been regression as his primary diagnosis, Dravet Syndrome, has predicted.

A dog could be specially trained to meet Cole's needs and give him independence that he could never have experienced otherwise. It could also comfort him when he is at the hospital, or after seizures. It could intervene when he is having meltdowns and help to calm his behavioral outbursts, which have been occurring with more frequency than ever before.

Cole has poor impulse control and will run into the street without thinking twice. He knows how to unlock and open doors and has let himself out on multiple occasions. He needs constant supervision. A service dog can be trained in tracking and could find Cole if he escaped.Brian and I have not slept in the same room for over a year. When we attended the IDEA League Conference in August, we noticed that the majority of people raised their hands when a speaker asked the question, "Who sleeps with their child?" The reason is for SUDEP (Sudden Unexplained Death in Epilepsy). Kids with Dravet have a greater risk of dying for "unexplained reasons". Most of these deaths occur while they are sleeping. More than a few parents have suffered unimaginable grief when their child has passed away in their sleep. Hopefully, this dog can replace either mom or dad in the next bed and give Cole some independence. We would still keep all of the monitors and alarms on, but he could feel like a "big boy" and sleep alone. The dog might even alert us early if there is going to be a problem, and we could be there to help. Dogs can also be trained to go and get the rescue medication, so the person assisting the child does not have to leave them to go in search of meds.

Cole cannot attend school at this time. Even with a nurse or 1:1 aide, groups of people and new environments are triggers for his seizures. If he felt supported and calm by having his dog with him, he could have the opportunity to interact with other kids and learn in a structured environment. Our living room can be distracting with its piles of toys and the television :) This new member of our family could help us in so many ways.

We are having a walk to raise money and awareness so we can make this dream come true. "Paws To Help" will take place at Liberty Park at 11:00 am on Saturday, October 23. We would love for everyone to come and join us. Bring your dogs and your sunglasses!! Cole can only be outside for a short period of time if he wears special glasses.

If you can't make it, you can always donate at Cole's fundraising page. Send this link to your families and friends and help Cole to become as independent as possible. If you have a blog or facebook page, you can copy the widget on our sidebar to share! Thank you for "pausing" to read our story.

Magic Coat

After being rejected by insurance twice, we finally just broke down and paid for the SPIO suit. We got the vest and short pants.

Wow, that's all I can say. Wow.
He calls it "the coat". Hey, the helmet was the "hat". Sure thing buddy, this can be The Coat.

Cole's therapist suggested it at the beginning of the summer. She then brought one to a session about a month later. He only had it on for an hour, and we could not keep it longer, but I could tell a difference. The SPIO (stabilizing pressure input orthosis) is an experimental treatment. It is a compression garment, used mainly for kids with CP, but the therapist said it was worth a shot with Cole's sensory issues. There are light weights sewn into the suit that put pressure on his nervous system in the exact places he needs to calm his over-firing sensory system.The long-anticipated SPIO arrived this weekend. Today was the first day that Cole had it on the entire day. I could tell there was a difference, a MAJOR one. We even went to a friends house for a little over an hour. No meltdowns, no major seizure activity. The last time we were there, we stayed about 10 minutes.

I think that we have had the most calm day that Cole has had in months. I really don't know if it was the SPIO, if it was because we were home without anyone else for the first time in a week, because he actually drank his supplements for the first time in a month, or what exactly was going on. Cole still did some very two year-old things like getting stuck between an arm chair and the wall, dragging my Christmas ribbon all over the place when I was in (wait for it...) the bathroom, and making the house look like a tornado had come to visit; but, there was a lot less hitting, yelling, crying and screaming today.

I am excited to try again tomorrow. I like this non-violent, will-actually-sit-in-my-lap version of Cole. I missed him.

If I Could

Sometimes I wish that I could go to my former self in my former life, tap her on the shoulder and say, "Don't waste your energy sister. All plans are off!"

While family and friends were enjoying wedded bliss and multiplying and replenishing the earth; I was married to my job and came home to an empty house or disinterested roommates. I would sit and plan for all of the things that I was going to do when I got into the next stage.

I would think that my children would do this, my spouse and I would do that. We would have these rules. On and on. I like rules and boundaries, just ask Brian :) For example, television. I worked so much, especially right out of college, that I did not have time for TV. I still don't watch a lot of network television. My DVR is full of Food Network, HGTV and the Disney Channel. I have no idea about the plots of LOST, Grey's, or a bunch of other shows that I hear about all of the time. My former self thought, "My kids are not going to watch a lot of TV. They will play outside, and do mind building art projects!" Ha ha.

Cole watches *gasp* multiple hours of television a day. Sometimes it is the only thing that I can use to distract him, sneaking a bite or two in his mouth while he is entranced with Mickey. Sometimes, sitting on the couch is all he can handle, after a long day at the hospital or when his sleep has been interrupted with multiple seizures. Do I like that I can sing all of the songs to all of the shows on Playhouse Disney and I dream about Calliou? Nope. Sometimes you gotta do what you gotta do.

If I could, I would also tell my former self to enjoy life. Go on vacation! With people your age, to exotic places! Don't waste time thinking about applying to law school. Go to Greece! Eat special cheeses! Swim in the English Channel! Write a book! It's funny how climbing the ladder can consume you even at an early age. So, I got what I wanted. Experience, authority, and a whole bunch of now-useless knowledge about sex offenders, the Medicare system, and how to fill out harassment forms. Don't get me wrong, I learned a lot in each of my jobs in my previous life. A whole bunch of things that are strangely coming in handy in this new life of mine. Information about hospitals, dealing with doctors, filling out paperwork, etc. I just wish I would have taken some time off to play, do something crazy. All of these little plans I made are now not achievable...and that's okay. I can still be a great mom without a JD or that elusive MPH.

I think what spurred this train of thought is a letter that I found. While trying to attempt to get some packing done, I found a letter that I wrote to myself to open when I got married-I was about 16; thank you, Young Womens :) I told myself that I was proud of me and all I had achieved and asked myself questions...about if I had attained all of these goals and dreams I had for myself. They were good goals, great dreams. Maybe a third of the list has happened, the others not so much. I did not do a lot of things that I had thought I would have by now...heck, earlier than now! Some of those goals are not really a priority now, but they were in the forefront of my mind at 16. They are things that I will not keep on my list. If I could, I would go back and tell that 16 year old Niki to write more goals, simple ones like, "Be Happy".

It is no use living in the past, but I do like to think of the future. What will I be like in 5 years? 10 years? 50 years? Will I have the same goals? Will I learn to just live in the moment and stop thinking about the next step? I think that we can get so consumed in our daily routines that all of these things that we wanted for ourselves just kind of get lost. We change and goals get replaced with new ones. I think we just need to take time every now and then to reflect on what we want to be like today. Not when we get married, have kids, get that job, buy a house, have grandchildren, etc. Today, I want to be peaceful. Tomorrow it can be something else.

Lucky

I have been going back through the last few months of posts. A lot of doom and gloom in there. It seems that I put all of the happy stuff on our family blog such as vacations, weddings, holidays and the like. To quote my brother-in-law, "I'm not gonna lie", things have been kind of dark the last little while. Brian took the stress index test again for fun and it said we should both just keel over from stress alone.

Yet, we have learned a lot about how lucky we are these last few months. Cole is in the middle for kids his age with Dravet. There are some that are better off than him, and some that are much worse. We are so lucky that he can walk. Ataxia and muscle problems are a part of this syndrome and could still be in our future. It took him a while to run. He still does not get a lot of air when he jumps, but hey-after 3 months of practice, he can jump now! He can throw like a Champ, just ask my forehead, which has been the recipient of many a sippy cup lately.

We are lucky that Cole has only been on one seizure med for this long. We foresee others in our future, but over two years with just one drug is amazing. We've added a bunch of others recently, but they are all related to the diet. We are SO lucky that the helmet has disappeared for now. Some never get real control of drop seizures and are constantly a fall risk.

We are lucky that Cole can talk. We realize this skill could be lost, but after months of therapy, we can't make him stop sometimes! He has made remarkable progress on this front in the last year. He has an opinion and can share it. Sometimes, I don't feel so lucky about that :)

Yes, we have oxygen at our house. At least we don"t have to use it everyday. The list goes on. We are grateful for the things that we do have. For the fun, silly boy that Cole is now. Who knows what the future will bring, but at least we smile everyday.

We are fortunate that we can pick up and move across the country right now. To get better medical care for Cole is the main reason. We do not have other children; do not have to pull anyone away from friends or school (besides Brian and myself). It is the right time, with the right insurance that can allow us to get second opinions all over the country. This is reason enough to make the journey-emotionally and physically.

We are lucky that we have only been in-patient 4 or 5 times. I think a lot of that has to do with a persuasive Momma, because they have told us to stay many times. However, things turn out much better if we just go home to our own beds. At least we have had the choice; some don't. Unfortunately for seizures, all you can do is monitor them and give the same meds that we have at home.

There have been good, even funny things that have been happening lately. This is like a journal, and it helps me to go back. I remember this time last year and how scared we were, thinking things could not get worse-wow, was I wrong. Now I can look back and laugh at our naïveté. It has made us stronger though, and willing to take risks. This little boy can overtake your heart in an instant and make you want to do anything for him. I hope I just get to keep him like this, where he tells me funny things and giggles a lot, for a while. His new favorite today is, " The King has an owie." Yes, if you watch Cars religiously like we have been for the last few days, you will realize that when The King gets into a massive wreck in the last race, he does indeed, have an owie.