tag:blogger.com,1999:blog-6756494548033742702024-02-19T04:31:55.866-05:00Epilepsy WarriorsNikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.comBlogger320125tag:blogger.com,1999:blog-675649454803374270.post-10836597181085463332014-11-07T15:57:00.000-05:002014-11-07T16:17:31.192-05:00Brains Are Equally As Important As Boobs*cough* Um, hey there!<br />
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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! ;)<br />
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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.<br />
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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 <i>really</i> 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. <br />
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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 <i><b>we</b></i> 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! <br />
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Turns out, taking pictures of seizing children is really hard, who knew?</div>
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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.<br />
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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?<br />
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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.<br />
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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? <br />
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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 <a href="http://talkaboutitorg.ning.com/profiles/blogs/unfortunate-truths-epilepsy-outpaces-breast-cancer-in-deaths-brea">this one</a> 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 <a href="http://www.cureepilepsy.org/">CURE </a>or <a href="http://www.dravetfoundation.org/">Dravet Syndrome Foundation </a>or <a href="https://www.aesnet.org/clinical_resources/faqs">American Epilepsy Society</a>. 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.<br />
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<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com21tag:blogger.com,1999:blog-675649454803374270.post-7115792673887319032014-03-04T14:12:00.000-05:002014-03-04T14:17:44.876-05:00Year In Review-Part 3This is part of a series catching up on 2013! See the other posts here: <a href="http://www.epilepsywarriors.com/2014/03/year-in-review-part-1.html">Part 1</a> and <a href="http://www.epilepsywarriors.com/2014/03/year-in-review-part-2.html">Part 2</a><br />
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SEPTEMBER<br />
Cole doesn't start school on time. He is just too unstable. We see a Integrated Medicine doctor. An MD, that also practices natural medicine. She has a theory about my adrenal insufficiency. Cole finally makes it to school.<br />
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We LOVE his team! We totally know what it is like to not have a support system at school and consider ourselves so incredibly lucky to have the amazing people here. He really struggles and has to start wearing a bib in September that has to be changed constantly because of the drool.<br />
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I even send him to school in his wheelchair when he can not hold up his head or walk.<br />
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Has not been eating at all for a few months and has been solely tube fed. Sometimes it is nice to have breakfast where super hero gear is mandatory.<br />
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Made a custom letterpress invitation for Gourmet Club. Find out I need double knee replacements. Start 6 weeks of collagen injections under my kneecaps. I am a huge fan of Lidoderm patches, even if you run out of regular Co Flex and need the dinosaurs to keep them on ;)<br />
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We continue to explore treatments for Cole. He is really struggling.<br />
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Government Shutdown starts. Total Major Seizure Count: 273<br />
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OCTOBER<br />
I am asked to give a class on Style for a group of young women.<br />
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I go to New York for a conference. We get adorable family pictures taken by my <a href="http://www.themoonlitnest.com/">talented friend</a>. Celebrate Slugger's birthday with a trip to Cox Farms.<br />
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The light goes out of Cole's eyes and he is zoned out for over a week.<br />
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I host Eat, Drink and Be Scary! Had so much fun with my theme this year. Glowing green ice cubes, dry ice, all sorts of fun and fantastic food.<br />
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Cole pulls out his g-tube. That makes my heart race more than any seizure nowadays. Cole is on antibiotics. School is like a petri dish. I break my foot, nothing they can do about it. It's Diffendoofer Day at school. I take Cole to the zoo. Decide to take Cole off of all benzodiazepines. He is a full blown drug addict. His body constantly searches for the next "hit" and ends up having more seizures because of it. Long story short, rehab at home is not fun. Realization that the hospital just can not help us any more is difficult. I start seeing a doctor about losing my hearing and <a href="http://en.wikipedia.org/wiki/Tinnitus">Tinnitus</a>. I will probably write more about that later, maybe...don't hold your breath :) We are Super Heroes for Halloween.<br />
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Meet Captain Canine, Super Cole, Tiger Mom and Dad...who doesn't need a secret identity. Total Major Seizure Count: 200<br />
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NOVEMBER<br />
Fall weather is perfect. The leaves are amazing. Cole gets sick again. More antibiotics. We start dealing with thrush as a side effect of not eating and drinking by mouth. We go to the Newseum. Fall baking is in full force. Cole starts having cycles of "good days" and "bad days". 6-9 days that are almost seizure free, then 3-4 bad days where he can have 60+ major tonic clonic seizures in one day.<br />
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We are just grateful. Even though the bad days are really bad. The good days are good and he can recover. Before, he was having bad days, every day and was regressing because his brain and body never had a break. Cole stops having nocturnal seizures every night. Only when he is in "cycle". After 7 months of fighting with Medicaid, we get 16 hours a day of nursing. Totally changes our lives, since we can now have night nurses. We are getting to see glimpses of our little boy coming back.<br />
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Total Major Seizure Count: 257<br />
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DECEMBER<br />
We have ice storms and more snow than we know what to do with. DC seems to panic and shut down every single time there is a storm. I get cortisone shots in both knees so I can play tourist with Grandma and Grandpa when they come for an early Christmas. We eat a lot.<br />
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Don't get to go home for Thanksgiving, Christmas, New Years, birthdays, baptisms or Grandma and Grandpa's <a href="https://www.lds.org/callings/missionary/senior">LDS mission</a> farewell. However, Christmas Day is fantastic for Cole and it is the first holiday ever in 6 years that he has enjoyed and was able to participate in traditions. Best day EVER!<br />
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Mom gets hearing aids for Christmas. They are actually quite small and blend easily. You can see here where I have a top knot, you can still hardly tell they are there.<br />
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Again, I will probably, maybe write about the emotions connected to this. Total Major Seizure Count: 204<br />
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All in all, we had an absolute whirlwind year. This is the major Reader's Digest compact version, with a lot of holes. Sometimes it is amazing to take a step back and realize how much can change in twelve months. All that matters at the end of the day is we are trying our best. I still get to snuggle this little guy who is not so little any more! He is a true warrior and makes me want to keep fighting, even when it seems like I don't have the strength.<br />
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<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com22tag:blogger.com,1999:blog-675649454803374270.post-42053790753458775782014-03-03T16:35:00.000-05:002014-03-04T12:51:15.844-05:00Year In Review Part 2This is part of a series covering 2013! See Part One <a href="http://www.epilepsywarriors.com/2014/03/year-in-review-part-1.html">here</a><br />
<br />
MAY<br />
Went on the Embassy Tours. One of the coolest things I have ever done! <br />
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Cole is super sick. Attended two Derby parties, hooray for hats! End up in the PICU. <br />
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Find out that one of our Dravet friends that we know personally earned her wings. <br />
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Did a lot of Zumba with friends. Got a chunk surgically taken out of my scalp.<br />
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End up in the PICU, again and then again. We were basically in the hospital for three weeks in a row with only a few days break in between admits. Total Major Seizure Count: 54<br />
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JUNE<br />
Went downtown with some great friends. Started a major obsession with the Library of Congress. Found out I don't have Lupus, I have Fibromyalgia and Osteoarthritis. Say good-bye to some of our dear friends when they move. Why does everyone around here move constantly?! Seizure control is null and void. Having up to 16 to 20 TC's a day.<br />
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Get pretty desperate and almost Life Flight Cole to Miami. Instead, we take a risk, drug him up, pack our bags and drive to Florida.<br />
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Stay inpatient for a week and do a major wean of Phenobarbitol while we are there.<br />
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Total Major Seizure Count: 95<br />
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JULY<br />
By divine intervention, Brian and Niki get to make it to Hawaii on a trip that has been planned for 6 months with her family.<br />
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There is a ratio of 3 adults to 1 Cole while we are gone. 7 Nurses switching off around the clock and help from friends who are salt of the earth. It was Brian's first trip and Niki's return to "Home" where she used to live while going to school. We jump off a 45 foot waterfall and try to have a good time even though we are thoroughly burned out. Niki got a baseline EEG since it had been 8 years.<br />
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Slugger goes to 4 Paws for Ability for some refresher training. We ended up in the PICU, again, while he is gone. Had a 2 hour status seizure. We start importing Stiripentol from France since we have tried just about every thing else under the sun. See <a href="http://www.epilepsywarriors.com/2013/07/sobering.html">the list</a>. Total Major Seizure Count: 244<br />
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AUGUST<br />
We take Cole to Seattle Children's Hospital.<br />
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<a href="http://2.bp.blogspot.com/-woa4Eq3IQaY/UxTy8OsqmYI/AAAAAAAAE68/2_la0RC3_-U/s1600/seattle1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-woa4Eq3IQaY/UxTy8OsqmYI/AAAAAAAAE68/2_la0RC3_-U/s1600/seattle1.jpg" height="320" width="320" /></a></div>
He has 6 TC's before we leave, 1 at the gate, 10 in the air, 2 at the airport after we deplane and multiple after we left baggage claim. One of the most stressful days of my life. He has muscle biopsy surgery to determine he has a Mitochondrial disorder on top of Dravet Syndrome.<br />
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Our summer vacation was flying across the country, having 9 Dr. appointments and 1 surgery in 4 different locations in 5 days. We even have sleep studies in two different facilities on the same night.<br />
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Cole is so drugged from the Stiripentol that he is Zombie-like and he doesn't have a nocturnal seizure, like we had been experiencing every night for almost a year. It always happens that way :) My sleep study shows I am sleep deprived. I paid money for that?! LOL<br />
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Have a pistachio macaron at Pikes Market that I will remember forever. Get to see some of our great Dravet friends. Cole is having 30 to 40 big tc's every day. Went on a night tour of the monuments. It was perfect, highly suggest it. Had an overwhelming display of love from family with "Cole Is My Super Hero" as the theme for our annual reunion. Total Major Seizure Count: 176<br />
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<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com14tag:blogger.com,1999:blog-675649454803374270.post-88931542412860846502014-03-02T15:12:00.000-05:002014-03-03T16:49:36.608-05:00Year In Review-Part 1I decided to just do a little catch up post and it turned into a series :) That can happen when you don't write for months at a time. Here's a little about what we have been up to.<br />
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For a little bit of history right before 2013, look <a href="http://www.epilepsywarriors.com/2012/12/the-list.html">here</a><br />
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JANUARY<br />
We start off the year in Utah. After a series of Rocephin shots and a major miracle, we get to go home for Christmas. Cole enjoyed sledding in Great Grandma's yard in between seizures. <br />
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Had our traditional fondue party. Got to have lunch with some of my Tiger Moms. We went bowling for Cole's birthday at least 3 separate times. <br />
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Had Snowquester. Frontal Lobe Nocturnal Seizures are in full force. None of us are sleeping. Found out Cole was accepted for Make A Wish with Rush Status. Total Major Seizure Count (this is mainly tonic clonic, drop in O2, convulsion, not nocturnal): 22<br />
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FEBRUARY<br />
Started the second <a href="http://dcgourmetclub.blogspot.com/">Gourmet Club</a> season. We start a long journey with Cole's bowels and end up in the hospital, twice for backed up stool. <br />
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Found our awesome Gastro, who in this small world went to med school with my cousin and used to live down the street from us in Utah. Who would have thought?! Had a Favorite Things Party, I can't help it-I love excuses to party! Had a major friendship break up. I don't think we talk enough about how this can impact us. I liked <a href="http://brookiebabble.blogspot.com/2013/07/how-to-survive-friend-break-up.html">this point of view</a>. Total Major Seizure Count: 23<br />
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MARCH<br />
Took Cole to see the Sea World exhibit in DC in anticipation for Make A Wish. Started a fitness competition with friends. I start <a href="http://www.epilepsywarriors.com/2013/04/a-big-hairy-mess.html">going bald</a>. <br />
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Feeling very unwell. Initial diagnosis is Lupus. Went to Miami Childrens. More tweaking of the meds. Always tweaking. <a href="http://www.epilepsywarriors.com/2013/04/purple-pictures-2013.html">Purple Day</a>, we love it! Had some of our wonderful friends come and stay with us for Easter. Total Major Seizure Count: 33<br />
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APRIL<br />
Went downtown to see the cherry blossoms for real. <br />
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First time we had just barely moved, Cole was in the hospital downtown and I was literally throwing up in the car as we headed home after discharge. They were pretty through the window! Second time, we had crazy weather and the bloom only lasted for 3 days, so by the time I made arrangements to get down there it was over. My diagnosis has been changed to possible cancer. Then back to Lupus. Had a milkshake that changed my life. Make A Wish.<br />
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This deserves multiple posts. It was such a bittersweet experience that we will remember for the rest of eternity. Not sure when the documenting will actually happen. The scrapbook that Crops Of Luv made for us is something that I will treasure forever. I turned a year older. Total Major Seizure Count: 31 (breaks record for most in one day with 6).<br />
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Stay tuned for exciting stuff like Hawaii, more trips to hospitals near and far and more!Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com16tag:blogger.com,1999:blog-675649454803374270.post-40273107147867838192013-12-10T13:26:00.000-05:002014-03-03T13:30:43.325-05:00ReflectSo much has happened this year. As I reflect on 2013, though we are no way close to December 31 in our little world-days can be extremely laborious at times and you can't predict tomorrow, I am sometimes shocked at the changes. Other times it seems like we were just here, getting ready for the holidays. You know what they say, "The days are long, but the weeks fly by". <br />
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I have not been writing, due to the chaos of life at the moment. Those moments seem to merge into months. The multiple hospital visits, all over the country took up the majority of the middle part of the year. Cole has been in an ever downward spiral, despite the multiple new treatments we have tried this year and the new perspectives we have sought out from specialists. In April when we went on Make A Wish, the most tonic-clonics he had ever had in one day was 6. On Thursday, he had 63. Friday he had 49. We even considered moving across the country, again, to get Cole more assistance. Add to that my own health issues-going bald, having a lupus diagnosis, retracting that and thinking maybe cancer, finding out that it was <i>just</i> Fibromyalgia. Discovering that my osteoarthritis is so severe I could be a candidate for double knee replacements. Lots of tests and shots and then the capstone of finding out I need hearing aids. What's next? A walker? However, through the trials of this year I think that I have gained some sense of coping. I really liked Victor Frankl's book <i>Man's Search For Meaning</i> and I agree when he says, "When we are no longer able to change a situation, we are challenged to change ourselves." Unfortunately, when it comes to health issues you really can not change a lot. You can eat right, exercise, etc. but when you are dealing with faulty genetics there is not a lot you can do to change the final result. So back to changing yourself. The only real thing that I could change over the last year is my attitude. <br />
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I think of last year at this time. We were giving Cole huge doses of Rocephin shots, because 3 big seizures in one day was just too much. We were exhausted emotionally and physically. We were so depressed, that we did not even decorate our Christmas tree. My marriage was on the verge of collapse-see, even people who seem like they have it all together, don't have it all together. There was just an overall feeling of overwhelming doom. Now, in between the bouts of sadness we still found ways to laugh. You will never find this house devoid of laughter as long as Cole is around.<br />
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Our circumstances have not changed, they have only gotten worse in many instances. Yet, there is a new strength that is developing in all of us. Sometimes when you have to work so hard to find the good times, it really makes you appreciate them.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com15tag:blogger.com,1999:blog-675649454803374270.post-18589929127647402002013-07-30T22:35:00.000-04:002013-07-30T23:07:35.940-04:00SoberingI have been in the throes of medical records again. When you see a new doctor, they always want to know what has been done in the past, what meds, what tests, etc. etc. Digging through the last 6 years has been sobering. What Cole's body has been through, the meds that he has tried, the hospital admissions...it really is too much for anyone that hasn't even entered Kindergarten. However, I look back and see how strong we are. We should have had at least two nervous breakdowns by now!!! :)<br />
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So, for the future and to be able to access it quick via the nice, old friend the Internet-I present a history of the treatments tried for my son:<br />
<br />
<b>Anti-Epileptic Medications</b> (including atypical treatments)<br />
Phenobarbitol<br />
Versed-rescue (Buccal and Intranasal)<br />
Ativan-rescue<br />
Propofol-rescue<br />
Keppra<br />
Diastat-rescue (rectal suppository and tablet)<br />
Ketogenic Diet<br />
Klonopin-rescue and daily<br />
Depakote<br />
Topamax<br />
Low Glycemic Index Diet<br />
Potassium Bromide<br />
Rocephin<br />
N-Acetyl Cyestine<br />
Clobazam<br />
Verapamil<br />
Prednisone<br />
Diazepam tablet-daily<br />
Phenobarbitol-rescue and daily<br />
Zonegran<br />
Ativan<br />
Stiripentol<br />
*Note: Some medications are listed twice. This is due to a reintroduction after many years of discontinued use. Rescue meds, used as needed, are also listed.<br />
<br />
<b>Adjunct Medications</b><br />
Acetaminophen<br />
IB Proufen<br />
Amoxicillin<br />
Potassium Phosphate<br />
Carnatine<br />
Magnesium<br />
Calcium<br />
Centrum Multi-vitamin<br />
Nano VM Multi-vitamin<br />
Vitamin D<br />
Mirilax<br />
Cefdinir<br />
Sennakot<br />
Lactulose<br />
Metamucil<br />
Multivitamin Supplement (Carnation Instant Breakfast)<br />
Magnesium Citrate<br />
<br />
<b>Treatments and Equipment</b><br />
Oxygen<br />
Pulse Oximeter<br />
FL-41 Lenses<br />
g-tube<br />
Feeding Pump-IV pole, Feeding Bags, Syringes<br />
SPIO-Stabilizing Pressure Input Orthosis<br />
Therapy Swing<br />
Helmet<br />
Cooling vest<br />
Wheelchair<br />
Enemas<br />
Seizure Alert Service Dog (he really is listed as Durable Medical Equipment in the law)<br />
Suction Machine<br />
iPad<br />
All equipment required to administer medication-pill crusher, syringes, g tube extension, etc.<br />
<br />
<b>Additional Therapies and Treatments</b><br />
Homeopathy<br />
Neurofeedback<br />
Speech Therapy (also including feeding therapy)<br />
Occupational Therapy<br />
Physical Therapy<br />
Aquatic Therapy<br />
Anat Baniel Method Therapy<br />
Craniosacral Therapy<br />
Sensory Integration Therapy<br />
Behavioral Therapy<br />
<br />
<b>Specialists</b><br />
Neurology-6 different ones<br />
Epileptology<br />
Genetics<br />
Dietician<br />
Opthamology<br />
Gastroenterology<br />
Anesthesiology<br />
Surgery<br />
Cardiology<br />
Orthopaedist<br />
Podiatry<br />
Orthotics<br />
Neuropsychology<br />
Nephrology<br />
Endocrinology<br />
Developmental Pediatrician<br />
G-Tube Nurse Practicioner<br />
Bone Health Specialist (Ortho)<br />
Pulmonology<br />
Pediatric Dentist<br />
Behaviorist<br />
<br />
<b>Hospitals</b><br />
PCMC<br />
IMC<br />
CNMC<br />
MCH<br />
IFX<br />
CCHMC<br />
SCH<br />
<br />
I was getting my hair done the other day and I spent the entire time I was "processing" on the phone making doctor's appointments. My friend asked me if I felt like we lived at the doctor. I had to be honest and say, "Yes". Looking at it all listed out is a little overwhelming. I am positive that I have missed something (probably more than just one something). No wonder we are tired! All I know is Cole is worth it. We will keep fighting.<br />
<br />
<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com19tag:blogger.com,1999:blog-675649454803374270.post-21113987543427506932013-07-08T21:41:00.000-04:002013-07-08T21:43:59.332-04:00Dropped OffHey Friends-<br />
Sorry it seems like we have dropped off of planet earth.<br />
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Our little world has been chaotic, to say the least, these last few months. <br />
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The extreme Reader's Digest version:<br />
* Make A Wish was awesome. Cole struggled. We had fun in between the seizures and took over 400 pictures<br />
* Cole has been in ICU 3 times and was almost taken via air ambulance to Miami<br />
* I can't count how many times we have changed and tweaked meds<br />
* Normal tonic clonic count right now is around 15 to 20 daily. Mostly at night. Never thought that could be normal<br />
*We drove to Florida and stayed inpatient for 6 days. Had to detox Cole and have some tough decisions ahead<br />
* 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<br />
* We are taking Cole to Seattle for a week to have an in depth Mitochondrial study done<br />
* 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<br />
* We don't sleep. At least for more than 2 or 3 hours at a time<br />
* Showering has become totally optional<br />
* Our finances are more than a little strapped<br />
* Slugger is still awesome<br />
* If you are our friends "In Real Life" we are so sorry that we are neglecting you<br />
* We are glad that we didn't switch jobs last month. Brian's co-workers have been awesome about our crazy schedule<br />
* I have over 300 e-mails in my inbox<br />
* 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<br />
* I don't watch TV any more<br />
* I gained 7 pounds in Hawaii and it was totally worth it!<br />
* ESY Summer school started today and I am really pumped about his IEP and the goals for the next year<br />
* It is very hot and humid around here. Or it is pouring rain<br />
* Cole has a new kiddie accordion and it is hilarious to watch him play it<br />
* Had a Neuropysch eval and found that Cole is still severely delayed in a lot of areas, but has made awesome progress in others<br />
* We are grateful for insurance<br />
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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 <b style="font-style: italic;">thought </b>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? :)<br />
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Peace and Blessings, Friends! One of these days I will jump back on the bandwagon.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com20tag:blogger.com,1999:blog-675649454803374270.post-90445200572412268722013-04-20T15:27:00.000-04:002013-04-20T15:27:00.109-04:00GratefulHi there~<br />
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If you are new to Epilepsy Warriors, welcome! You probably headed over here because you got something that looks like this<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrwc24q4wkNSa5RhtXQbikvF4e4LlcbRljrrvBHAMLL2Uo-SIH9-xq3yU293Mo8oQB-71PdDmgRvSCuz1SrBB4Ylj57UuB5Ykf5FIYXrstj3JvhU7r2u17kra_2dOnSF19KOJfCn_H0W-/s1600/IMG_2424.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxrwc24q4wkNSa5RhtXQbikvF4e4LlcbRljrrvBHAMLL2Uo-SIH9-xq3yU293Mo8oQB-71PdDmgRvSCuz1SrBB4Ylj57UuB5Ykf5FIYXrstj3JvhU7r2u17kra_2dOnSF19KOJfCn_H0W-/s320/IMG_2424.JPG" width="240" /></a></div>
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We just wanted to say <b>Thank You</b> again!</div>
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If you want to learn more about Cole, you can go <a href="http://www.epilepsywarriors.com/2010/03/coles-story.html">here</a>.</div>
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To learn more about Slugger and the special work he does for Cole, you can go <a href="http://www.epilepsywarriors.com/2012/06/sluggers-story.html">here</a>.</div>
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We encourage you to look around the website and feel free to e-mail us any questions or comments at epilepsywarriors@gmail.com Let us know your experience of meeting Cole and Slugger! If you want to contribute to Cole's custodial account for his medical debt, you can use the PayPal button on the sidebar. Living with a rare disorder is extremely expensive and every little bit helps.</div>
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Thank you so much for making this trip magical. Cole really struggles on a daily basis with a condition that is very hard to treat and makes it hard to be a regular little boy. He is happy though and you probably noticed his amazing smile. Our wish is that you will pass that magical smile on to others. You never know who will need it!</div>
Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com3tag:blogger.com,1999:blog-675649454803374270.post-46559835274468293632013-04-18T14:54:00.000-04:002013-04-18T16:35:29.283-04:00It Is Getting Closer!The anticipation is building for our Make A Wish trip!<br />
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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. <br />
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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.<br />
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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.<br />
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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!" <br />
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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.<br />
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My friend helped me make this adorable bunting banner with her awesome <a href="http://www.amazon.com/Silhouette-Cameo-Starter-Bundle-Cutter/dp/B007R83VKE/ref=sr_1_1?ie=UTF8&qid=1366310695&sr=8-1&keywords=silhouette+cameo">Silhouette Cameo</a>. 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! ;)<br />
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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.<br />
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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 <b>just </b>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. <br />
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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 <a href="http://capturemecandid.com/">gorgeous pictures</a> of my boys. For those of you who are wondering, I used <a href="https://pinholepress.com/products/play-date-notepad-3-20004/">Pinhole Press</a>. 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! <br />
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Only a few more days to go!Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com3tag:blogger.com,1999:blog-675649454803374270.post-79743238091069831362013-04-17T16:27:00.000-04:002013-04-18T17:08:24.042-04:00A Big, Hairy MessStress is not a joke. If I can do anything right though, it is handling stressful situations...so I say to myself.<br />
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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.<br />
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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 ;)<br />
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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 <a href="http://www.epilepsywarriors.com/2012/08/the-day-we-should-have-won-emmy.html">this</a> more recent incident. I know that my life right now is <i><b>extremely</b></i> stressful. Brian and I took a test from his grad studies again recently and we are at the highest end of the stress spectrum. <b>Fun</b>. 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.<br />
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Then a few weeks ago, something happened.<br />
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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.<br />
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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!<br />
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<a href="http://en.wikipedia.org/wiki/Alopecia_areata">Alopecia Areata</a> 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.<br />
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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.<br />
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The initial results show that I have markers for <a href="http://en.wikipedia.org/wiki/Lupus_erythematosus">Lupus</a> 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 ;)<br />
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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.<br />
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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.<br />
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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<a href="https://www.lds.org/"> faith</a> teaches the same thing. We can be there for each other in times of trial.<br />
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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 <b>you</b> 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. <a href="http://www.lds.org/general-conference/2012/04/special-lessons?lang=eng">This</a> 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 ;)Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com3tag:blogger.com,1999:blog-675649454803374270.post-83076712218436844602013-04-02T14:30:00.000-04:002013-04-18T17:08:53.002-04:00Purple Pictures 2013We 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.<br />
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Cole and Slugger struggled with taking a picture</div>
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We had little kids from all different places (some that live all the way in Japan!)</div>
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People who are related to us</div>
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People who don't even know us</div>
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and people that we haven't seen for a long time.</div>
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People who are related to us in our hearts</div>
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and people who are really dedicated to our cause, whether we see them all of the time or not</div>
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(I just realized that you are in here twice, E! Lucky you!!)</div>
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We loved seeing everything purple from headband and beanies to toe nail polish and even</div>
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Grandpa's black/purple eye from a Dodgeball match</div>
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We know that there are a lot of our friends out there that struggle with all kinds of things</div>
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but for just one day, it was so beautiful to see people around the world come together</div>
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and do something as easy as wearing purple </div>
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to show their support for people who have Epilepsy</div>
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We loved seeing you on Facebook and Instagram<br />
Sorry if I didn't post your picture<br />
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We can't wait for next year!</div>
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Purple Power</div>
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<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com0tag:blogger.com,1999:blog-675649454803374270.post-1652396955841567912013-03-25T11:20:00.000-04:002013-03-25T11:50:12.304-04:00Purple Day 2013<div class="separator" style="clear: both; text-align: center;">
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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 :)<br />
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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.<br />
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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.<br />
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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 <a href="http://www.epilepsywarriors.com/search?q=purple+day">here</a>.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com2tag:blogger.com,1999:blog-675649454803374270.post-9084366388589940752013-02-16T21:36:00.001-05:002013-02-16T21:37:30.343-05:00Glad I ListenedYou know, after what seems like thousands of doctors appointments, it can get hard to absorb all of the information.<br />
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This week has been kind of crappy, pun intended. Warning to the wise, I am totally going to write about bodily functions.<br />
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The boy has not been himself lately. I took him to the doctor last Thursday because there had been an increase in seizures and some congestion. Wanted to make sure that it wasn't something like <a href="http://www.epilepsywarriors.com/2012/12/our-florida-adventures.html">this</a> where there are no signs and symptoms of illness, but low and behold he truly is sick. Got him checked for flu and strep, both were negative. Ears looked good. Lungs were clear. The doc said he just had a virus. So we just get to wait around for it to depart.<br />
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The weekend was okay, then things started to get rough. Around Tuesday morning both Brian and I agreed that something else was going on. Multiple times he would just curl into the fetal position, which is not normal for him. Remember, this kid has a great vocabulary, but can not say, "I'm sick. I hurt. I feel gross. My tummy does not feel good." etc. Plus, he doesn't feel pain like the rest of us. All the detective work I was doing wasn't pulling up any definitive answers. Time to go back to the doctor. <br />
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I get there and our lovely Nurse Practitioner, who is more like a family member at this point, checks him out. I tell her that I suspect a kidney stone or a bowel obstruction. What would cause random expressions of pain, without any other outside symptoms? He is eating, drinking, peeing and pooping regularly. No fever, no cough, the boy doesn't look or act sick 98% of the time. Just increased seizures and occasionally curling up in a ball. I tell her about a previous visit I had about a year ago where the g-tube specialist told me that kids with g-tubes can get backed up with stool, even if they are having bowel movements. It seems like everything is normal, but they really are constipated. He also has a genetic pre-dipostition to kidney stones. We agree that we are not taking any chances and we need some diagnostic tests. She does a Urine and a CBC in the office, which came back fine, but alas there is no CT, x-ray, etc available there.<br />
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Off to the ER we go! There was some miscommunication about what we were really there for and I expected the usual rigamaroll that comes with an ER visit, but this was just insane. We were there for.ev.er. I am usually such a fan of this hospital.<br />
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I understand that it is hard to believe me at first glance when I say my son is sick and not acting like himself, when he is running around the room and smiling. Sure, lady. He looks REAL sick. So they waste a ton of time just trying to decide if I am crazy. Then they decide to go to the opposite end of the spectrum after talking to a doctor that we rarely see and is totally on my bad list. They order him off of his current medication, want to change it to something that we have already tried and failed, and want to order an MRI...of his head. Because that makes sense! We come in for abdominal pain and they want to admit him for two days and do a long, sedated procedure for his brain? Mercy. I am not here for seizure management. He hasn't smacked his head...why are you ordering this?<br />
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After a few hours and explaining myself thouroughly to multiple people, they begin to understand why I don't want an MRI. Once again, I was glad that I had listened at one of those millions of appointments. Truly, Cole has only had one MRI and it was when he was 7 months old. Things have totally changed since then. I asked our neurologist if we should get an updated one. He asked why. I told him that we wanted to see if/how things had changed. He then proceeded to ask me why I wanted to know. Then, being the awesome doc that he is, told me that in the end it wouldn't change treatment. An MRI would show white matter loss, or a brain tumor. Cole has Dravet, we know why he has seizures. So, no brain tumor. As for the white matter loss, it could totally be possible. The kid has had thousands and thousands of seizures and episodes of hypoxia. How would it change our treatment? It really wouldn't. Cole changes so fast, that we treat him in the present. So, through that explanation I was educated/reaffirmed that sometimes you don't need to do major tests just for the sake of doing tests. I already knew this based on my work history and my insurance bills, but I never thought in a million years a neurologist of all people would say that I shouldn't have an MRI for my child, who has a rare brain issue. Good guy. ANYWAY....<br />
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I let the ER staff (nicely) know that we are not here for an MRI. We are not here to be admitted for "observation". We want to check out his abdomen. Can we do something about that? They suggest a CT. okay....Why are we doing a CT that has a lot of radiation and takes forever, when we could just do an abdominal x-ray and an ultrasound? At this point, someone has finally listened to me and called Dr Miller. Who, thank the Lord, told the doctor to listen to me because I know what I am talking about. So-we get the x-ray and ultrasound. Low and behold, the child has a bunch of old, backed up stool just sitting in his colon. Ever been constipated? Yeah, it stinks. Times that by 10. We would have never known unless we took him in. Man, this child continues to amaze/confuse me. Absolutely nothing but mommy instinct pointed to this problem. I am just glad that it had not turned into a full obstruction and it was easily treatable. Plus, Slugger got to feel like a movie star. Without fail, every nurse on staff always visits our room when we come into the ER. They love Slugger.<br />
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So, Cole has been drinking lots of PlumSmart and getting Milk of Magnesia. He does not feel as crappy. We will just add this to the list of crazy phenomenons. However, the road is still rough.<br />
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Glad I listened to the g-tube nurse, glad I listened to the neuro when he told me that it wasn't necessary to do an MRI on Cole at this point. Unless he has had head trauma or something, but not for a bellyache. Otherwise we could still be at the hospital, admitted for nonsense and possibly catching whatever germs are floating around the building.<br />
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Cole is still not himself. In fact, today we wondered if we were going to make another trip to the hospital. This time for signs of low blood pressure. The guessing continues. <br />
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In between playing detective we have had fun this week. Valentines was always a big deal at my house growing up. We declared the entire week up to it, "Love Week". So for Love Week I have been making lots of heart shaped food, we got small presents, the house is decorated (unlike Christmas) and we have been enjoying Cole's excitement. He was thrilled with the Valentines he brought home from school and little art projects throughout the week. When he is asked who his Valentine is, he says, "Daddy". BIG surprise ;)Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com1tag:blogger.com,1999:blog-675649454803374270.post-76560645355448420402013-02-07T09:58:00.000-05:002013-02-07T09:58:00.593-05:00More About Give Kids The World Village<div class="separator" style="clear: both; text-align: center;">
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Here is another great video about Give Kids The World Village. It shows just a tidbit of what we are going to be able to experience on Cole's special Wish Trip.<br />
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GKTW hosts children from multiple wish granting organizations worldwide, but Make A Wish is the main organization that sends kids here. An entire resort specially dedicated to children who have life threatening illnesses, who been granted a special trip of a lifetime.<br />
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A whole week with passes to different theme parks, water parks and anything else Cole can dream of. Even sugar free, dairy free ice cream for breakfast! I have already made a tentative itinerary based on what we think HE is going to want to do and let me tell you...it is going to be F.U.N.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com0tag:blogger.com,1999:blog-675649454803374270.post-28316842949924151242013-02-05T11:18:00.000-05:002013-02-05T11:18:00.310-05:00Random Things About MeInstagram was having this little diddy for a couple of weeks where people posted random things about themselves.<br />
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Since it has been so heavy around here, let's lighten it up with some random things about moi.<br />
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<a href="http://4.bp.blogspot.com/-1kmNep9r5fU/URAIX3cr8SI/AAAAAAAAEvw/xpfmiER1FZ0/s1600/2012_4_7+Niki+Hyer+025.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-1kmNep9r5fU/URAIX3cr8SI/AAAAAAAAEvw/xpfmiER1FZ0/s320/2012_4_7+Niki+Hyer+025.jpg" width="212" /></a></div>
-I think I look like a dork in "serious" pictures. Case in point.<br />
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-I have probably over 50 pairs of shoes. 3/4 of those were purchased by my husband. Even though I like shoes, I actually prefer to be barefoot.<br />
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-I would rather throw up than exercise. That's how much I hate it. I do it anyway, but I don't have to like it and endorphins are seriously something someone made up.<br />
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-I have visions of my youngest sister and I actually living in the same location; so we can start a catering and wedding cake business. Oh yes, you better believe I have designed the stationary.<br />
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-My favorite place to be right now is in my bed.<br />
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-My biggest pet peeve is someone promising they will do something for me, and then they don't. Also the reverse. I can't stand myself when I have promised someone something and then I can't follow through.<br />
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-I redecorate parts of my house, in my head, at least once a day. <br />
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-It was my biggest ambition in life for a long time to be a Marine Biologist Veterinarian. I cry every time I go to Sea World.<br />
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-In a perfect world, I would live on a farm near the mountains and the ocean.<br />
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-I am a fast reader and can plow through a book really quick. My parents would catch me awake in the middle of the night because I had to finish "Just one more chapter".<br />
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Feel enlightened? ;)Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com4tag:blogger.com,1999:blog-675649454803374270.post-50897595330422505442013-02-04T13:19:00.003-05:002013-02-04T13:21:02.162-05:00MixologistIt is no secret for those who know me that I love beverages. I have an entire board on Pintrest dedicated to them. It's probably a really good thing that I <a href="http://www.lds.org/?lang=eng">don't drink alcohol</a>, because I would probably spend a good chunk of money on fruity drinks :) Cocktails turn into mocktails around here, but there is still something satisfying about mixing flavors to come up with a new wonderful combination. For example, last night I made a strawberry, pineapple, coconut, vanilla, Sprite concoction that was awesome! I think I would make a pretty good bar tender. I could probably get really into Mixology.<br />
<br />
When you are mixing and matching medications, it has been termed "cocktails" just like those fruity drinks with a toothpick.<br />
<br />
It seems like through our constant tweaking lately we have found the perfect combination to buy us a short break. It is not a quick fix, but you don't stay drunk for days from one glass of wine. In theory, anti-epileptic drugs work on the brain like alcohol. It makes it sleepy, slows it down so that it can't fire off and have as many seizures. When Cole's brain is over-active, we have found (for now) that giving him a specific cocktail will buy us at least 8 hours without a tonic clonic. Now this is not something that we can do every day, but it has sure proven useful in the last two months.<br />
<br />
Double dose of Keppra-an AED that he has been on for a long time.<br />
5 mg of Diazepam (Valium)-a benzodiazepene<br />
and 7.5 mL of IB Proufen-an anti-inflammatory<br />
<br />
It doesn't matter if he has a fever or not. We have tried these things separately also as a form of rescue medication. Right now, it only works when you do all three together. Strange, I know. Weirder things have happened.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com1tag:blogger.com,1999:blog-675649454803374270.post-66298217263108223782013-02-03T12:45:00.000-05:002013-02-04T13:05:34.058-05:00Rush My emotions are all over the place. <br />
<br />
Cole has been granted a wish from <a href="http://www.midatlantic.wish.org/">Make A Wish</a>! Truly, it has been a long journey. <br />
<br />
I first applied for Make A Wish when we lived in Utah. Things were crazy, but my dear friend inspired me. Her daughter passed away just weeks before they got the news that she could be a Wish Kid. She told me that she would give <i>anything</i> to take that special trip with her daughter; and I was introduced to Give Kids The World Village.<br />
<br />
I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village. She told me more about it and I looked it up online when I got home that night. Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online. Give Kids The World Village was so magical. I wanted to take Cole there. It was a place where no one is different, and dreams come true. After a couple of weeks without hearing anything, I called the office. I was told that they were waiting on paperwork from Cole's doctor. I never heard back.<br />
<br />
We moved shortly afterwards and it was one of the last things from my mind. I was so busy trying to get everything else into order. However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor. Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish. I was livid. However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way. He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip. Hindsight truly is 20/20. I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.<br />
<br />
Fast forward. Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc. Life was constant chaos. By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village. December 2012, the darkest of times, rolled around and I remembered my sweet friend. Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family. I felt it was time to apply. <br />
<br />
My doctor was texting me every day at this point. I gave her a heads up that she was going to be contacted. Then crazy stuff started happening.<br />
<br />
She spent over an hour on the phone with the foundation. She filled out tons of paperwork. Then more paperwork. SHE made the decision and told the foundation that haste was necessary. Sometimes it can take up to 18 months to grant a wish. I didn't mention anything to her about going right away. SHE asked for rush status. This is where a wish can be granted within 24 hours if necessary.<br />
<br />
When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time. Someone who didn't even know us, agreed that things were so bad that there was to be no delay. I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes. Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories. I knew that a wish was possible, but rush status is for kids for whom death is imminent. Right? Once again I had to face reality that things truly are harrowing around here. However, light entered and gratitude overwhelmed me. Make A Wish has made it possible for our dreams to come true. For Cole's dreams to come true. <br />
<br />
The process has been so smooth and our wish granters are awesome. One is a big burly guy who has been a volunteer for 10 years. He said he has only cried once before. When he read Cole's application, he cried for the second time. <br />
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Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted. The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust. His story of survival is inspiring. He lost everything, thought he was going to die, but beat the odds. He also ended up finding his sister who was sent to another camp. When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning. He wanted to give hope. Even if it was just for a week. More than 80% of Make A Wish, Wish Kids, actually survive to adulthood. Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it. Some of them don't even get to experience their wish. But GKTW is a place of magic, hope and peace. A resort that is totally dedicated to granting wishes for kids. We are so honored to become a part of this special family. The countdown has begun and I have been preparing Cole a little bit every day. From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey. This little boy deserves everything. Make A Wish is helping us to make it happen. A whole week dedicated to doing whatever he wants. No doctors, no therapy, just fun.<br />
<br />
Watch this video and be inspired, like I am. Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day. I can't wait to hear the constant barrage of giggles when we go on our wish trip. Thank you, Make A Wish of Mid-Atlantic. "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.<br />
<br />
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<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com4tag:blogger.com,1999:blog-675649454803374270.post-74245111367481559102013-01-21T18:56:00.001-05:002013-01-21T19:17:13.828-05:00Just How Bad Is Bad?So things have continued to be a whirlwind around here. People ask me how it has been going and honestly I don't know what to say. I don't want their pity or to make them uncomfortable. Sometimes they don't want to know, sometimes they do...but not all of it. I probably just say, "Not great" or "Okay". Translation: Bad. For those of you who wonder just how bad is bad? Here you go.<br />
<br />
We had a <a href="http://www.epilepsywarriors.com/2011/12/our-christmas-miracle.html">Christmas Miracle</a>, Part II; but not until we went through our personal version of hell. December proved to be very trying. <br />
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The Rocephin shots brought some relief. Cole was still struggling up to the day that we left for our vacation. Then he had 5 glorious days. There was still plenty of myo's and the dreadful nocturnal tonic clonics, but no day time major seizures! Christmas was not marred by the beast, like it usually is. Yes, there was still plenty of stress and waiting for the other shoe to drop and behavioral issues and myoclonics and, and, and....but we recognized that we were witnessing a miracle. A 12 hour journey, including incredible bladder control by Slugger, was completed without incident and there was time with family and loads and loads of presents! The antibiotics did what we thought they might. Gave him a little break in the cycle and at just the right time. We are so grateful.<br />
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The daily tonic clonics came back while we were gone. Then right before we left things settled down again, making us happy but confused. Even with picking up a cough from traveling, he had an even longer break, 8 days-which has not happened in over a year. Then things picked up fast and furious. <br />
<br />
Re-cap on the last few months:<br />
September-19 GTC's<br />
October-17 GTC's<br />
November-24 GTC's<br />
December-40 GTC's<br />
January to date-18 GTC's<br />
<br />
So what exactly do these numbers mean? It really doesn't seem like they are that high...well, except for that 40. That number reflects <i>only </i>major seizures. What is major?<br />
<br />
For us, <i><b>right now,</b></i> major seizures include most or all of the following:<br />
Loss/altered state of consciousness<br />
Full body convulsions<br />
Drop in oxygen saturation<br />
Need for rescue medications<br />
Lasting over 1 minute<br />
Post Ictal period that includes slowing of speech, sleeping, or <a href="http://www.epilepsywarriors.com/2012/03/todds-paralysis.html">Todd's Paralysis</a><br />
Loss of bowel or bladder function<br />
<a href="http://www.epilepsywarriors.com/2012/04/post-ictal-blindness-and.html">Post Ictal Blindness</a><br />
<br />
A pretty big list! This means that Cole is still having plenty of seizures that we don't deem "major" right now. We don't even count it unless it meets some of this criteria. So-he is having GTC's (especially at night) that we are not adding to the tally, because they are less than a minute and he doesn't need oxygen or meds. However, we still have to go through the pain of having our little boy scream in terror, clutch his face and shake all over. The thing that sucks (pardon my language) is that we can't do a dang thing about it. All we can do is hold him and let him know that we are there for him; and then not be able to fall asleep for a long time. He usually goes right back to sleep, me not so much. This is happening on average 6 times a night. Saturday, it was off and on all. night. long. He is occasionally having complex partials right now that we are calling "major", but not as often as in the past. They are almost always generalizing, so they are still being classified as GTC's.<br />
<br />
Cole is still having plenty of myoclonics and other small seizures, lasting only seconds. Hand tremors, eye flutters, micro muscle spasms, foot drops, little jerking motions. Occasionally I catch absence. If I had to ballpark guess, I would say small seizure average is around 700-1,000 a day. I don't count (or I would be running around all day making tick marks into a notebook). Some days are okay, some days are horrible and it looks like he has been eating Mexican Jumping Bean larva. We also know that he is having a lot of myo's in his sleep, some that are not even noticeable unless he is hooked up to an EEG.<br />
<br />
So, what do we do now? We have tried more AEDs (anti-epileptic drugs), less AEDs, dog meds, antibiotics, I guess that it is time for blood pressure meds. For the record Cole has been on: Phenobarbitol, Levetiracetam, the Ketogenic Diet, Clonazepam, Depakote, Topamax, Potassium Bromide, Clobazam and now Verapamil. Plus a bunch of stuff that is considered "alternative" or "adjunct" or "supplemental". That is a lot of meds and treatments for a kid who is not even 5 yet (hooray for a birthday this weekend)! Verapamil is looking like it is going to be added to the list of failed meds.<br />
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Basically I guess it all boils down to the fact that our life is an emergency right now. If I seem tired, distant, on edge, depressed, silly, don't make any sense, or act down right crazy...forgive me. I am working on little to no sleep and huge spikes of adrenaline then the crash. Sometimes I can't even recover before it is time again for life and death situations. Oxygen saturation at 14% is a true emergency. Just because we have not been hospitalized during all of this doesn't mean that it isn't serious. Watching your child struggle and suffer is one of the hardest things in the world to witness. Feeling helpless is right up there. We have basically every thing the paramedics have to offer us right here-portable suction, oxygen, rescue meds, pulse oximeter, <b>experience</b>. So in between mourning the <a href="http://niederfamily.blogspot.com/2012/12/the-mom-i-would-have-been.html">Mom I Would Have Been </a> (love this article) and keeping Cole alive I have been finding time for a little bit of yoga (hello, Sadie Nardini on YouTube!), paying bills, having a good/decent attitude, driving to therapy 5 times a week, occasionally making dinner, having spontaneous dance parties, finding time to snuggle with my boy and appreciate every day that he is here. It is pretty rough around here, but he is the reason that I get out of bed every day. He continues to laugh, entertain me, get into trouble and be the cutest little boy on the block. All he cares about is making a gigantic list for his birthday. <br />
Top wishes include:<br />
Building a bowling alley in the basement..."<i>With a sweeper mom</i>, <i>a real bowling alley."</i><br />
Ping Pong Table<br />
Ride On Excavator<br />
Tuba<br />
A real pirate sword<br />
Indoor swimming pool<br />
Saxaphone<br />
<br />
Geezo, Cole! Expensive taste, big dreams. I wish that I could grant them all, except for maybe that real sword. Right now, my biggest dream is for me to actually be able to count the number of seizures every day. Maybe even get to the point where we have a day or two completely, totally seizure free. Hey, if Cole thinks we can build a regulation bowling alley in our house, I can dream about a day when I can see my little boy get to act and feel like a little boy.Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com3tag:blogger.com,1999:blog-675649454803374270.post-12909076765846684182012-12-20T18:41:00.000-05:002012-12-20T18:57:59.201-05:00The List<!--[if gte mso 9]><xml>
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In the last few weeks Cole has had a downward
spiral. For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has
been happening. This isn’t even the half
of it, but for record keeping purposes I will hit the highlights.<o:p></o:p></div>
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<br /></div>
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<b>October</b>-Cole starts seizing more often. At this point we have
practically stopped using benzos and rescue meds in general. He has once again become immune to them and
we fear withdrawal symptoms. Also, in
prep for starting Onfi. Only used rescue
meds 3 times all month. We go to Camp For Courageous Kids. I still need to write about that. It was wonderful! Had our first 3
Tonic Clonics in one day. We stopped
Potassium Bromide in late August and the month of getting it out of his system
has ended. Start Onfi. Largest break in between major seizures was 4
days. Every seizure looks
different. Different types, different
times, different lengths. There is no
regularity or ability to predict what is coming next. This has kind of been the theme of Dravet,
but this year has just been mind blowing.
It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We prepare for Superstorm Sandy.
End up evacuating anyway. We were
gone for 5 days. Drive 14 hours
home. The next day, Daddy leaves for NYC
to help with the aftermath. He is gone
for 2 weeks. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>November</b>-Get a small break when we increase Onfi.
Have 7 days with no major seizures.
Then things get hairy. Daddy is
still gone. Have a nurse quit and so
only have coverage 3 days a week. Start Anat Baniel Method Therapy. It is a very slow process with Cole and his sensory issues. He doesn't like strangers to touch him.</div>
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<br /></div>
<div class="MsoNormal">
Cole
starts having at least 2 tonic clonics every day. Nothing is stopping them. Onfi, double Keppra, and rescue meds are
hardly working when we use them. Still using all rescue meds and double Keppra sparingly. Cole starts having major
regressions. Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth. Has some potty accidents. Loses some of the songs he knew before.<o:p></o:p></div>
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<br /></div>
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Brian comes home and the next day we leave for Miami. Read about our Florida adventure <a href="http://www.epilepsywarriors.com/2012/12/our-florida-adventures.html">HERE</a>. 24 major seizures recorded, not counting nocturnal.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
<b>December</b>-We drop the rest of the Onfi.
Cole finishes his amoxicillin on the 1<sup>st</sup>. We get ready to start Verapamil. Want to go back to school and get settled
into routine before we start something new after all of the travel. Silly us.
The 2<sup>nd</sup> reintroduces daytime TCs. It is so weird how he has a honeymoon every
time he is on high dose antibiotics. We
start a love/hate relationship with 911.
We call them <b>at least</b> once a week all month. If you know us at all, you know that it is
totally abnormal for us to get to our breaking point so often. Cole continues to live his legacy and stops
seizing once we call, or once the paramedics show up. Whether we wait for 29 minutes or 8 minutes,
the story is the same. It does not work
if we pretend. He knows <span style="font-family: Wingdings;">J</span> We have to be serious and dial for real. We start the Verapamil. Cole catches a cold the first day he goes
back to school and shares the love with Mom and his main nurse. We stop the Verapamil, after one whole
day! Still not sure if it works for him,
but we couldn’t know while he was sick.
Also didn’t want to take the chance of a major drop in blood pressure
when he was ill. We take him to the doc,
strep negative, flu negative and throat culture is negative. He loses his voice
and looks horrible, but still has some stamina.
The entire month the longest break he has from tonic clonics is 2 days,
and that only happened once. The myo’s
abound. The TCs ramp up from 2 a day to
3 a day. <i>Every single day</i>. Cole
regresses further and does strange infant-like behavior like chewing on his
feet and licking the floor. We try
double doses of Keppra, since that helped on the airplane in Florida, kind of. It helps maybe 1 out of three tries. Mom gets super sick and wants to curl up in a
ball and hide. We don’t have nurses, so this
makes things interesting. Cole, per his
M.O. continues to be sick, for a long time.
At this point, Cole has been de-sating to the 30s and 40s during major seizures
and will hover for minutes even with 5 Liters of oxygen. He is congested and occasionally coughs, but
it is just a virus, right? We throw around
the idea of possible pneumonia. I am talking
to the pediatrician daily. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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It doesn’t matter what we do. If
we use rescue meds, the seizure doesn’t stop.
When we used to administer medication like Diastat or Versed, at least it
helped to prevent future seizures that day and would give him some sort of a
break. Cole is seizing again within a
few hours, even with Diastat. Has 26
major tonic clonics (this is not including the short nocturnal ones) in 12
days. During all of this we call Dr
Miller. He suggests that we start
Bromide again for a short-term solution.
We know that he broke out in a rash about 2 ½ weeks in to it
before. So, back to dog medication we
go. Immediately we notice that Cole’s
speech declines. By the second day, he
is slurring his words. By the third day,
he is drooling even without seizures. We are just looking for a short-term
solution. Something to just break the
cycle of seizures. We know that Cole
can’t handle long term Potassium Bromide.
We see our son slipping away from us.
Call Dr Miller again. Don’t want
to wade into any more old medications.
We could start increased eye fluttering, maybe even those evil drop
seizures could come back?! Things are
already bad here, why would we want to possibly make it worse? So, we get into “illogical and completely
bizarre” territory. Discuss things like
IVIG or prednisone. Heaven help us, ACTH
comes up. Also high doses of
antibiotics…to control seizures. Illogical. Remember how Cole had a honeymoon with the
Amoxicillin? As bizarre as it seems,
some kids with Dravet have decreased seizures on high doses of
antibiotics. There are side effects, but
it is less risk than steroids. So-we
decided to start 3 days of 1000mg Rocephin shots, that day. Cole gets 6 huge shots in the behind. Fun...not really. Dr Miller wants to keep up the Bromide for a
week and we talk about steroids as the next approach. By now, we are on the fourth day of Potassium
Bromide; Cole can barely speak at all.
He is drooling like an infant and does not want to eat. His gait is slowing. He is grabbing his face before a seizure, going tonic and then scratching himself. He looks like he has been in a fight with a rabid raccoon. Perfect for those family pictures next week. Brian and I decide to take him off Potassium
Bromide. This entire time we are
vacillating between deciding to go or not to go home for Christmas (cross
country flight). The next morning, Cole
wakes up shaking like I have not seen him for a long time. The tremoring and myoclonics are so intense
that his whole body is involved. Almost
into tonic clonic territory. We wonder
if it is due to this, due to that. Always
having to play detective. We give him a
double dose of Keppra and 5 mg of diazepam.
Decide to continue with the antibiotic shots. I say, "We are not going home". Cole improves throughout the day and regains
some speech. He still sounds like a
drunken sailor and cannot say the ABCs, but hey…he is talking! We’ll take it!!!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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The entire day of the 2<sup>nd</sup> antibiotic shot, he does not have a
tonic clonic. We are still holding our
breath, but so grateful for the small break for our child. His color starts to come back; he doesn’t
look like death warmed over. Day 3 of
the antibiotic (today), at the time of publishing, he has had two big seizures. Better than 3! So-if you really feel like nothing is working and your child just keeps
clustering no matter what you do, go out
on a bizarre limb and try high doses of antibiotics. Or maybe not. It is not a long-term solution, but worth a shot. I think. 31 major seizures recorded, not counting nocturnal, and we have 11 days left.</div>
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<br /></div>
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I still don’t know if we are going to go home
for Christmas. But really, what if this
is his last Christmas? Won’t we regret
staying just because we were scared? Our
life the last few years has taught us to live to the fullest. So we will probably put him in a drug-induced
stupor, board that plane and hang on for dear life. Who needs performance enhancing drugs, bungee
jumping, marathon running and rock and roll?
Just get a child with Dravet Syndrome and you can have all of the
adrenaline rushes you could ever ask for! <span style="font-family: Wingdings;">J</span><o:p></o:p></div>
<!--EndFragment-->Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com11tag:blogger.com,1999:blog-675649454803374270.post-29138869153202200702012-12-19T15:49:00.000-05:002012-12-20T19:32:02.167-05:00Our Florida Adventures<!--[if gte mso 9]><xml>
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We had our 6 month visit with Dr Miller scheduled for November. We decided to move it from the regular clinic
day and combine it with our Thanksgiving break.
Two birds with one stone! <o:p></o:p><br />
<br />
Before we even got to the hospital, we had all sorts of drama. Cole had been having very frequent tonic clonics at this point and we were nervous (as always) about flying. Somehow taking care of a seizure at 30,000 feet isn't so easy. Landing the plane, also not so easy. We gave him a double dose of Keppra per Dr Miller and sent up a hundred prayers that he could make it on the flight. God has a sense of humor! Cole made the flight, but had a severe seizure at baggage claim. We were quite the sight. Urine streaming down my legs (Cole's), holding a seizing child, Brian trying to grab our bags off of the carousel, Slugger wondering what the heck was going on. Hey-he didn't have one ON the plane! The next day he was so bad that we considered calling 911 and going to the local hospital. However, we totally knew that if they admitted us, we would not be discharged in time to make our appointment in Miami the next day. We didn't call, Cole made it through the night. We got up the next day and headed 3 hours south to Miami Childrens Hospital.</div>
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While we were there, Cole had his first sleep study. Results show there is no major change. He is still seizing throughout the
night. No sleep apnea though,
hooray! We discussed with Dr Miller the
increased frequency in tonic clonics and myoclonics. Cole had not been sick lately and we felt
like we had a baseline established, as <b>fluid</b> as it was. Bottom line was, we knew that the Onfi wasn’t
working. <o:p></o:p></div>
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Dr Miller, as great as he is, basically tells us during our appointment that we are running out
of options. Which we kind of already
knew, but it is hard when one of the best doctors in the country for what your
child has, tells you that he can’t help you.
Cole has tried 7 or 8 meds at this point and has failed them all except
Keppra-which we really don’t think is working very well anyway. So we decide to get off of Onfi. Next stop, Verapamil (a blood pressure med of
all things). You know we are all about
Plan A, B, and C…so after that, it is time for Stiripentol or revisiting old
meds. We discuss alternatives such as
VNS, medical marijuana (which is illegal where we live), IVIG, steroids such as
ACTH or prednisone. He wants to see us in 3 months. Okay, now things are really getting real. On the day we visit
Dr Miller, Cole has three tonic clonics.
He also seems really sensitive to light.
Much more than usual and is hiding his head under a blanket. I will say again, seizures in the car, on the freeway are definitely ranked in the worst top 5 places to have your child seizing.<o:p></o:p></div>
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The next day all hell breaks loose.
Cole has 4 tonic clonics and was basically in NCSE (non convulsive
status epilepticus) the entire day…we just didn’t know it. He is inconsolable and we can tell that he is
in terrible pain. He is actually
complaining of eye pain. For a kid who
has run around on a broken foot, twice, this is huge. The light sensitivity is very intense and he
wants his special glasses on even indoors.
We try a double dose of Keppra, Motrin, Tylenol…nothing is working. We contact Dr Miller and tell him we suspect
a migraine. He tells us to give a combo
of Benadryl and Aleeve. By tonic clonic
#3 we are getting anxious. We give
Versed, it doesn’t help. Cole can’t hold
up his head, is drooling profusely and can barely speak. Yet, he doesn’t want to be left out. The boy is adamant that he is a part of the
holiday party and refuses to sit out in the car with me. So I take him inside and he sits on our laps,
wrapped in a blanket as we eat and looks the definition of disabled, which is
rare for him. But he is there and he
breaks out a crooked smile; such the definition of resilience. At TC #4, it is evening and we call the
on-call neuro, who told us she was extremely nervous and wanted us to come
in. It is never reassuring when a
neurologist admits to you that they are nervous! We explained that we were 3 hours away and
would have to be Life Flighted, which could take over 5 hours from start to
finish since we had to go through the local ambulance, hospital, etc. She agreed that it could take too long. Getting through to a new hospital that
doesn’t know us and doesn’t know Dravet takes forever. By the time they believed us enough to call
Miami and get the go-ahead, it could be hours.
Remember he isn’t actively seizing at this point so to a regular doc, he
would look fine. She suggested that we
actually get in the car and drive down.
At the end of the conversation she gives us instructions to give him
Diastat and a double dose of Keppra. If
he has another, we are to call AirMed and get down to Miami. No matter how inconvenient it is. The Diastat in combo with the other meds
settles Cole’s brain to the point he can sleep, just through the night. It also tips us (and Dr Miller) off to that
his supposed “migraine” was actually bizarre seizure activity. Since pain relievers did nothing for it and a
benzo did, it was probably seizures. Weirder things have happened with Cole. Add it to the list of "rare". Most
regular people would sleep for a day or two with all of those medications in
their system, not our Mini Hulk! He only
got a 7 hour nap. We truly experienced a
miracle though and made it through the night. I
really didn’t want our first helicopter ride to be in a different state and
take a couple of hours. Thanks divine
intervention! <span style="font-family: Wingdings;">J</span><o:p></o:p></div>
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<div class="MsoNormal">
Those meds carried over and he did not have a major seizure the next
day. However, we got a new surprise at
night. Cole started having major
nocturnal seizures. Tonic clonics that
last from 30 seconds to a minute. He
will sit up in the middle of the night, grab his face with his shaking arms and
have full body convulsions. We can only
hold him and tell him that we will be there for him. They are too short to drop his oxygen and don’t
need meds. However, it gets my brain
kicked in to overdrive and I just lie there awake, waiting for the next one. One night he had 9.<o:p></o:p></div>
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The next day, I had my mommy instinct telling me he might have an ear
infection. Mind you, there was no
complaints of pain, no major fever, no pulling of the ears, no lethargy, just a
hunch. We took him in and BAM, both ears
were infected; they started him on Amoxicillin.
The rest of our Thanksgiving break was full of nocturnal seizures, but he
had a break with daytime ones. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was so ready to go home. I
wanted our routine back. There were
rumors flying around that Brian was going to be sent back to New York which stuck fear in my heart but I knew that I had a back up plan for support and we could really use the money. The hurricane, him being gone, Miami, the holiday and all of these
seizures were getting to me. So, we were
grateful for the break from daytime chaos. Well, at least where seizures were concerned! We had a great
time with our cousins and other family members that we don’t get to see very
often. Plus, it was 80 degrees the day
we left! Is 32 too young to become a
snowbird? <span style="font-family: Wingdings;">J</span><span style="font-size: 16pt;"><o:p></o:p></span></div>
<!--EndFragment-->Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com2tag:blogger.com,1999:blog-675649454803374270.post-44078348682766992912012-12-03T10:52:00.001-05:002012-12-03T10:53:30.113-05:00EvacuateHey there.... *awkward silence*<br />
It's been a while. How are you?<br />
<br />
We. are. alive. <br />
<br />
If you live in the United States, you probably heard of <i>Frakenstorm </i>otherwise known as Hurricane Sandy. At one point it was headed straight for us. So, we readied our house. Our emergency preparedness skills kicked in, full force. We took everything out of the basement. Moved all of our pictures and precious possessions to the top floor. Pulled all of our furniture away from the walls. Put towels in all of the windows. Got gas for the generator, bought water and food. Stocked up on medication. In the end, even though we were super prepared with heaters, batteries galore, flashlights, blankets and enough food to feed a large family for weeks, we still ended up evacuating. It was the best thing for us as a family, especially for Cole.<br />
<br />
Our house was fine and we ended up spending the time in warmer weather. Some would say, "Why?". Others knew exactly what we were thinking when we packed up and left in a matter of hours. Barometric pressure, possibilities of no power, no access to the hospital, etc. Even if there was something as simple as a tree blocking our road, it meant that the ambulance couldn't get to our house if we needed it. We didn't know what would happen, but the majority of our life is hanging in the balance of the "cone of uncertainty" to use a phrase from the weather man. We didn't need any more uncertainty. Our life is an emergency and we did not need to add to it. So, we left for a little while.<br />
<br />
I feel like I have kind of evacuated the blog. Even social media. No more Instagram, very limited looking at Facebook. It was the best thing to do in the moment. <br />
<br />
I really want to catch you all up on what has been going on around here. Honestly, it is overwhelming. Failing multiple medications, stress with work, new therapies, school stuff, nursing stuff, family stuff, and more just <b>stuff</b>. Cole is having more seizures than ever...and I mean, ever. I kind of evacuated my life too. This little semi-reseblance to a normal existence that I have been carving out for the last year has kind of been put in the closet. Since our nursing is extremely limited I have gone back to full time caregiver 24/7. The boy is with me<b> everywhere</b>. He has also been missing lots of school.<br />
<br />
Hurricane Sandy also took our daddy's attention for a month. For a week he was constantly on his phone and computer and then he was in NYC for two solid weeks. Cole was really struggling during all of this and it could have been a really dark time. In the end, it showed me that I am stronger than I thought. I always knew I was good under pressure, but I really reached my breaking point. That is when people stepped in, who owed me nothing by the way, and took a little piece of the burden. We are not out of the woods yet. We almost had to Life Flight Cole and my little calendar book is full of days upon days of multiple major seizures per day. We went to Miami and hopefully have a new plan (or two), but we are kind of running out of options.<br />
<br />
Stuff like the blog, e-mail, Facebook and Instagram have been so far in the back of my mind that it seems like another life completely. I still miss you and want to catch up on our high highs and our low lows, if only for record keeping purposes. In between all of the trips to the hospital and the days of not showering because you can't leave Cole for a second, we have had some funny, good times. <br />
<br />
Stuff like Cole going to the beach. Playing with cousins we have not seen in a long time. Cole being obsessed with excavators and wanting to call Santa on the phone. We have always known that the only thing we can control is our attitude. So-we had an adjustment and are going to make this holiday season the best that it can be. Yep, our life is still an emergency; but we will show up at the ER with antlers and tacky Christmas sweaters!<br />
<br />
Happy Holidays,<br />
NIK<br />
<br />
P.S. We got nominated for an <a href="http://www.kwikmed.org/20-exceptional-sites-supporting-epilepsy/">award</a>. Kind of fun :)Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com2tag:blogger.com,1999:blog-675649454803374270.post-37621314293347690102012-09-18T08:37:00.004-04:002012-09-18T08:57:09.861-04:00All Over The PlaceHey. We have kind of been all over the place the last few months. High highs, low lows. <br /><br />Let's relate to the playlist. You know about the Soundtrack For Life by now. <br />This morning I put the: Faith Hill, Savage Garden, Bellydance, Sade, Jack Johnson, Best of the 80s, Mormon Tabernacle Choir, Usher, Dierks Bentley, Josh Groban, Mariachi, James Taylor, Adele, 90s Country, and Michael Bolton Pandora Stations on shuffle. Confused?<br /><br />A little bit of everything. (and this is not even half of the variety in my library)<br /><br />Smash all of those artists into one playlist and you get something that is similar to our universe the last little while. Kind of crazy, but it works.<br /><br />I promise that I have sat down with intent to update, but it is one thing after another around here and I have gotten distracted more than once.<br /><br />So, Reader's Digest...we are alive, we will survive and I need a nap :)<br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com3tag:blogger.com,1999:blog-675649454803374270.post-36901101097506950672012-08-23T08:28:00.000-04:002012-08-23T08:28:00.211-04:00Surrounded By GreatnessI have never really been star struck. I can have a conversation with a CEO or a governor and I won't get nervous. I remember being nervous the first time I met Dr. Dravet. She just represents so much emotion in my life. This year was much better ;)<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/-BQg0rOVmM8g/UDU0lRF-DjI/AAAAAAAAEuI/YJK50pubvf4/s1600/IMG_3789.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://3.bp.blogspot.com/-BQg0rOVmM8g/UDU0lRF-DjI/AAAAAAAAEuI/YJK50pubvf4/s400/IMG_3789.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779583511648144946" /></a>I love that this conference not only gives you the opportunity to connect with other families, but with incredible doctors; who could end up helping you in the future.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/--SArSeFWwSU/UDU0k23PDAI/AAAAAAAAEt8/itbczk0h6GM/s1600/IMG_3788.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/--SArSeFWwSU/UDU0k23PDAI/AAAAAAAAEt8/itbczk0h6GM/s400/IMG_3788.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779583504607022082" /></a>The consultations are incredible and you have the chance to have one on one time with the best doctors in the world...without having to pay a dime! I try to tell everyone that you are entitled to a second opinion, and a third and a fourth. You are the best advocate for your child and should totally trust your doctor and treatment plan.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-5ODp5uWTp3g/UDU0kV2d4RI/AAAAAAAAEtw/3Y4L2w9tGZ4/s1600/IMG_3732.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-5ODp5uWTp3g/UDU0kV2d4RI/AAAAAAAAEtw/3Y4L2w9tGZ4/s400/IMG_3732.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779583495745429778" /></a>I had the opportunity to once again share meals with these people and get to know them outside of their offices. It was something that really impressed me at the first conference.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-eWi_ViIUnzA/UDUzvukPJ8I/AAAAAAAAEtY/rCiPsS8GwCE/s1600/IMG_3691.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://1.bp.blogspot.com/-eWi_ViIUnzA/UDUzvukPJ8I/AAAAAAAAEtY/rCiPsS8GwCE/s400/IMG_3691.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779582591846787010" /></a>We had the opportunity to hear from doctors around the world with the magic of the internet. There were presentations from Italy and Australia, even though the doctors were not physically present. We can give each other feedback and spur ideas for new research and treatments. It also gives us the opportunity to laugh. I made Dr Miller laugh more than once with a recount of our summer. See, even he thinks we are never boring ;)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/-vcmRAPMKLR0/UDUzvFU3lxI/AAAAAAAAEtM/9pCEGaRDM4s/s1600/IMG_3690.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://3.bp.blogspot.com/-vcmRAPMKLR0/UDUzvFU3lxI/AAAAAAAAEtM/9pCEGaRDM4s/s400/IMG_3690.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779582580776474386" /></a><br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com0tag:blogger.com,1999:blog-675649454803374270.post-5131037677253598482012-08-22T14:46:00.009-04:002012-08-22T15:52:12.968-04:00IRLWelcome to the first in a series of VERY picture heavy posts.<a href="http://1.bp.blogspot.com/-5oO4hxt8D_U/UDUry3T-HHI/AAAAAAAAErM/4pHeoBpivRs/s1600/IMG_3786.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://1.bp.blogspot.com/-5oO4hxt8D_U/UDUry3T-HHI/AAAAAAAAErM/4pHeoBpivRs/s400/IMG_3786.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779573849641065586" /></a>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. <br /><a href="http://2.bp.blogspot.com/-gUljigBP5uo/UDUreAIO_VI/AAAAAAAAEq8/y6lxUoDaLmk/s1600/IMG_3802.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-gUljigBP5uo/UDUreAIO_VI/AAAAAAAAEq8/y6lxUoDaLmk/s400/IMG_3802.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779573491230506322" /></a>All are special. These are some of the people who can read me like a book.<br /><a href="http://4.bp.blogspot.com/-59xM_gzCojg/UDUrdHvkZXI/AAAAAAAAEqw/Gtrqx7Ue19s/s1600/IMG_3829.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="http://4.bp.blogspot.com/-59xM_gzCojg/UDUrdHvkZXI/AAAAAAAAEqw/Gtrqx7Ue19s/s400/IMG_3829.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779573476094666098" /></a>Some of the people who cheer/roar for us when we accomplish even minor things.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfk1BmQojlm8bdYuVNV4jrkY7GmrRc12xd-lLnbjJrvQm76y-DI_KF8dmqZCjqaJ4l1DbHxSYvM6fdrf4kbsmo3YhGO5avjuSeORD3F02B5jQLI-HeMOZ2Tt76EbG1apG7AfO38a1bIvXq/s1600/IMG_3836.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfk1BmQojlm8bdYuVNV4jrkY7GmrRc12xd-lLnbjJrvQm76y-DI_KF8dmqZCjqaJ4l1DbHxSYvM6fdrf4kbsmo3YhGO5avjuSeORD3F02B5jQLI-HeMOZ2Tt76EbG1apG7AfO38a1bIvXq/s400/IMG_3836.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779573469209169618" /></a>Or understand my twisted sense of humor, because most of them have the exact same dose of sarcasm.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAolKuz6atrx6b6x31afCQ2AnJxYl8a8BVhSZbYdg0KuQIGbgvAXc382qiSE9KYliWTC9dD36Z8TyJ7V0NVxrD6kjFEHoluFeqyJ4x_uyzCkhdV3wI28NN0IfcjYDGWOh0I7zhrnO8ld_U/s1600/IMG_3857.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAolKuz6atrx6b6x31afCQ2AnJxYl8a8BVhSZbYdg0KuQIGbgvAXc382qiSE9KYliWTC9dD36Z8TyJ7V0NVxrD6kjFEHoluFeqyJ4x_uyzCkhdV3wI28NN0IfcjYDGWOh0I7zhrnO8ld_U/s400/IMG_3857.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779572677671106882" /></a>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!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-rqsAHHKiW4I/UDUvB1STjyI/AAAAAAAAEsA/U9V5dUJD6ZI/s1600/IMG_3834.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-rqsAHHKiW4I/UDUvB1STjyI/AAAAAAAAEsA/U9V5dUJD6ZI/s400/IMG_3834.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779577405330132770" /></a>Some are from your backyard. <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifFnMd3zxxZ-F-zizYOiU0JUzK-Y7O4fetL_lDZ66MilLZ7BSxZ_CPDMk5L_fJFzX-N7b1fhh_Ji_ooYAiWwnkn1n42KP2FxKkeK6rsHDRtSk6dULd2nIDXjmuKjeBno4qod4SvgjaVYdP/s1600/marissa.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifFnMd3zxxZ-F-zizYOiU0JUzK-Y7O4fetL_lDZ66MilLZ7BSxZ_CPDMk5L_fJFzX-N7b1fhh_Ji_ooYAiWwnkn1n42KP2FxKkeK6rsHDRtSk6dULd2nIDXjmuKjeBno4qod4SvgjaVYdP/s400/marissa.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5779578539453033778" /></a>Some are so sweet that you want to pack them up and take them home with you.<br /><a href="http://2.bp.blogspot.com/-hpn0A6g6WZw/UDUqAlncsiI/AAAAAAAAEp0/7bXpbk7EKSM/s1600/IMG_3877.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://2.bp.blogspot.com/-hpn0A6g6WZw/UDUqAlncsiI/AAAAAAAAEp0/7bXpbk7EKSM/s400/IMG_3877.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779571886385836578" /></a>The children especially leave huge marks on your heart. I love these two.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTxQqzyMOraqsmV1XT6Vxy6Tn-oMFglbuUvbLe5z3mvU90GW_pjRH8tQ56vPVWSM9-kZXbji6gm1X1YQbtJXwPOyj1kVS7dTk_k8K-kMldwlAWwRqcGxDQcRmHKgiotlSXU52SS3OgfAB5/s1600/IMG_3881.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTxQqzyMOraqsmV1XT6Vxy6Tn-oMFglbuUvbLe5z3mvU90GW_pjRH8tQ56vPVWSM9-kZXbji6gm1X1YQbtJXwPOyj1kVS7dTk_k8K-kMldwlAWwRqcGxDQcRmHKgiotlSXU52SS3OgfAB5/s400/IMG_3881.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779571874433549218" /></a>Some have an alarming amount in common with you.<br /><a href="http://1.bp.blogspot.com/-C0ifqOOLDUU/UDUp_RaYXUI/AAAAAAAAEpc/VxKgOS6mO5w/s1600/IMG_3885.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://1.bp.blogspot.com/-C0ifqOOLDUU/UDUp_RaYXUI/AAAAAAAAEpc/VxKgOS6mO5w/s400/IMG_3885.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5779571863782448450" /></a>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.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-8fdQLGpF6Y8/UDUwEcZtZXI/AAAAAAAAEsY/ytu3MJp79bA/s1600/grouphug.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="http://2.bp.blogspot.com/-8fdQLGpF6Y8/UDUwEcZtZXI/AAAAAAAAEsY/ytu3MJp79bA/s400/grouphug.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5779578549701535090" /></a><br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com0tag:blogger.com,1999:blog-675649454803374270.post-23075419568923851902012-08-21T11:38:00.003-04:002012-08-21T11:57:58.696-04:00DSD4Home from the Dravet Syndrome Spectrum Disorders 4 Biennial Conference! I have been working for months and months to prepare for this and I was so busy the entire time. I am so glad that we got the opportunity to participate in something that we are passionate about.<br /><br />When I was deciding what to pack, I had to conclude that I have a severe addiction to stripes. It might be hereditary.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-prZptDIMl_Q/UDOr2zNpVvI/AAAAAAAAEng/FlHGCMi09us/s1600/IMG_1666.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="http://2.bp.blogspot.com/-prZptDIMl_Q/UDOr2zNpVvI/AAAAAAAAEng/FlHGCMi09us/s400/IMG_1666.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5779151704795207410" /></a>I spent a lot of time putting together these bags for the families and doctors. Special shout out to my amazing committee!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/-t5b3HkSLICA/UDOr3dZTc2I/AAAAAAAAEns/BIWETd0z5HA/s1600/IMG_1680.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="http://2.bp.blogspot.com/-t5b3HkSLICA/UDOr3dZTc2I/AAAAAAAAEns/BIWETd0z5HA/s400/IMG_1680.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5779151716118393698" /></a>I even had Dr Dravet herself sign my <a href="http://www.amazon.com/Dravet-Syndrome-Charlotte-DRAVET/dp/2742007377/ref=sr_1_1?ie=UTF8&qid=1345563931&sr=8-1&keywords=dravet">book</a>! Can you believe that she didn't have a copy? I was pleased to be the person to present her with a copy of her own book. It was amazing that we were able to give these to every family. <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/-XcVMDf65-Kk/UDOr4kB5yDI/AAAAAAAAEoE/Y7yYYCYGGRQ/s1600/IMG_1682.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="http://1.bp.blogspot.com/-XcVMDf65-Kk/UDOr4kB5yDI/AAAAAAAAEoE/Y7yYYCYGGRQ/s400/IMG_1682.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5779151735079159858" /></a>She is not a fan of getting her picture taken. I got a better photo later on in the week. <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/-5a2rWzxj-CU/UDOr31bPG7I/AAAAAAAAEn4/IKbQlFbKzfs/s1600/IMG_1681.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://4.bp.blogspot.com/-5a2rWzxj-CU/UDOr31bPG7I/AAAAAAAAEn4/IKbQlFbKzfs/s400/IMG_1681.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5779151722568948658" /></a>So much happened! We saw old friends, made new ones and learned a lot. I will need to break it all up or the post will be a mile long!<br /><br /><br />Nikihttp://www.blogger.com/profile/18203785532285828846noreply@blogger.com1