Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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This roller coaster called life, parenting, and the art of seizure control....

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Keto Admission

Posted by Nicole on May 21, 2014 at 10:35 PM Comments comments (1)

Like I promised: Not a blog! But an update for those who are curious ☺ Aiden was admitted to Children’s on Monday morning after a 12 hour fast to start the ketogenic diet. He was already in pretty deep ketosis (where the body is burning fats, producing ketones, instead of burning carbs for energy) thanks to a high fat modified Atkins style diet we’d been doing to prepare him for keto.


Monday morning was fine, until he became hungry. He was allowed half ...

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Keto, T-Minus 20 days

Posted by Nicole on April 29, 2014 at 10:45 PM Comments comments (0)

1. Yes, I finished the book I was writing.


2. No, it’s not published, and it never will be. It turns out I had no idea how much worse things could get, and the book I thought was rich in emotion and drama looks like child’s play now.


3. Yes, of course we’ve tried marijuana for Aiden. No, it didn’t work for him.


I wanted to update our friends on a big step Aiden’s taking in a few weeks, and a quick Facebook pos...

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Break Time

Posted by Nicole on September 10, 2011 at 8:50 PM Comments comments (8)

Faithful readers,

I'm taking a little break from this blog. It's been truly therapeutic for several years, and I thank you all for your wonderful following and the priceless comments. 


I've decided the next chapter in my life is going to be writing a book, which I'm well into at this point. I look forward to sharing it with you in whatever way is possible and hope you'll enjoy reading it despite many of the stories being vaguely familiar :)


Wish ...

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Indiana Jones

Posted by Nicole on August 25, 2011 at 10:55 PM Comments comments (2)

He sat on the edge of his wheelchair exclaiming over and over, “Who at?” with his little index finger pointed outward toward various parts of the set.


Photobucket


He recog...

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Rewind

Posted by Nicole on August 21, 2011 at 7:50 PM Comments comments (0)

I’ve started and stopped writing this entry about 10 times in the past week. How do you put into words something so complex as taking a child on a Make A Wish trip? I suppose we start at the beginning. Bear with me.


When Aiden was first diagnosed I got to know a mom with a little girl who also had Dravet syndrome. She was about 6 months older than Aiden and was diagnosed as an infant, which really just means that the family had had almost 3 years to digest this awful...

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Make-A-Wish Day 1

Posted by Nicole on August 14, 2011 at 9:30 PM Comments comments (2)

I don’t know who these people are, though their nametags are called “wings.” Those who haven’t yet earned their wings wear sticker-nametags while tending to their flocks, eager to jump to any sheep’s aid.


They are older and retired, they are young with the glint of youth and innocence, and they are somewhere in between. One says, “Come here – Let me show you something cool” to Owen and Alec, while another patiently pushes t...

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And then there were... None.

Posted by Nicole on August 2, 2011 at 10:25 PM Comments comments (3)

Woah! Let me off!


You probably know by now how intensely closed off with my kids I am... I have this gut feeling I can do this myself, that I don't need the breaks typical moms do. No, I haven't left him at preschool by  himself, and no, we haven't had a babysitter. Not one.


So how is it that I'm about to send my baby to kindergarten without me next week? What happened?? Where did the time go? How did I let this happen?


I am im...

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Polyanna, Bierstadt, and Truth

Posted by Nicole on July 26, 2011 at 11:23 PM Comments comments (2)

What would you like this week? Upbeat “We can move mountains,” Polyanna style? Or stripped to the bones bare, raw emotion? I can do either.


We can move mountains. Or at the very least, we can climb them. We climbed Mt. Bierstadt, one of Colorado’s “easiest” 14ers. (A 14er is a mountain rising over 14,000 ft). I say “easiest” because that’s what all of the hiking sites and personal reviews said. “My 6 year old handled ...

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14 Days

Posted by Nicole on July 18, 2011 at 10:31 PM Comments comments (2)

Happy 14th Day! Aiden has not had a major seizure since the 4th of July, which makes it officially 2 entire weeks: A record since… Let me check my spreadsheet… April 2010, 72 tonic clonic seizures ago. Woohoo!


How did we celebrate? By heading to the pool, of course, on a 97 degree, sunshiny day. We can officially add “taking my 3 kids AND a friend for the 9 year old to a body of water for an hour and a half to swim” to the list of luxuries stiripe...

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Up Down, Up Down

Posted by Nicole on July 12, 2011 at 12:21 PM Comments comments (4)

A few vignettes from our month-long stay back in Minnesota will give you more insight into how I feel than the usual overview, so hold on tight: It’s a roller coaster.


Day 1: The miles have flown by, all 911 of them. (Ironic, huh? 911 is a familiar number to us...) We sail into Grandma’s house on the last fumes of our third tank of gas, not quite 14 hours after we left this morning. With every state line I felt myself moving farther from my husband back home,...

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Quickie

Posted by Nicole on July 8, 2011 at 11:42 PM Comments comments (2)

We've been on vacation back in Minnesota for 4 weeks now, resulting in spotty internet service, a locked photo application, and long spans between updates. I'll digest the events and emotions coursing through my head soon... I'm a little busy with family, seizures, musical beds, vomit, waterskiing, more seizures, underwater seizures, and (saving the best for last) SISTER :) Until then, good night!

The Lake

Posted by Nicole on June 21, 2011 at 12:44 AM Comments comments (1)

They’re all asleep – All 5 of them, curled up or sprawled out as the case may be for Owen. Aiden is snoring next to me, the calming green light tracking his heartbeat rising and falling on the bedside table while I type. Alec sleeps in the adjacent twin bed like an angel, two hands folded neatly under his cheek, and Owen, Lexie, and Scout are sharing the cushioned mat on the floor at our feet. We’re all in one bedroom at the lake, just the way I like it. I’d be lonely ...

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Mom! They're...

Posted by Nicole on June 14, 2011 at 4:13 PM Comments comments (1)

I'm sitting here in front of a Caribou 900 miles from home using their internet connection to do my work for a few minutes (online teaching is absolutely a godsend when you have a child like Aiden!), and now that I've finished work I can brag about my flexible kids very quickly.


14 hours in the car (complete with old-school navigation by maps through various farmfields and dirt roads no thanks to a GPS who thought a 1.5 hour U-turn should do the trick) and no fighting, no wh...

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Responsibilites, shmesponsibilities

Posted by Nicole on June 3, 2011 at 10:44 PM Comments comments (1)

It seems there’s been a bit of denial going on around here lately. I’ve been shirking my responsibilities and heading to the pool with the kids every day since it opened last weekend, reveling in the fact that we can even DO that. Just a year ago that would have been an insta-seizure. (And we didn’t have a pool. Or ridiculously beautiful weather, but I digress.)


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Graduation, Take II

Posted by Nicole on May 29, 2011 at 10:55 PM Comments comments (2)

I totally wanted to walk across that overturned rowboat with him. I graduated from preschool! Again! Which means next year he'll be in kindergarten, BY HIMSELF.  Free at last, free at last, Watch out grocery store - here I come!


Photobucket

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Dravet Who?

Posted by Nicole on May 24, 2011 at 11:00 PM Comments comments (1)

“Dravet who? We’re going to the zoo.”


This was on one of my friend’s Facebook walls the other day and I love it. Partly because it rhymes, partly because I know she and her daughter have been through an awful patch for the past few months and if they can ditch everything and head to the zoo, then I can too.


Time has slipped away from me this week, but did you know that my in-laws flew into town as a surprise birthday/MBA grad...

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Don't know what to call this, but...

Posted by Nicole on May 16, 2011 at 11:32 AM Comments comments (3)

You can’t make this stuff up. I realize this has happened to most of you parents at some point, but it seems to get more absurd with every inch he sprouts upward.

 

2:45pm (Note the late afternoon time stamp and imagine this scenario repeated at least 10 times between when he woke up in his undies at 8am and now). “Aiden, go upstairs and put pants on. For the love of Pete, put some pants on.”

 

Smooch stumbles up the stair...

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Mothers

Posted by Nicole on May 8, 2011 at 9:42 PM Comments comments (4)

I thought I knew the definition of “mother” when I was 21 and newly married. My mom loved me, played Trouble every morning before kindergarten, and taught me the difference between right and wrong. She taught me how to tell the truth (sorry that took so long, Mom!), how to make friends (again, another long lesson), and how to show your respect to others.

 

When Owen was first born I smothered him in my version of mothering. I wrapped him ...

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SSN

Posted by Nicole on May 1, 2011 at 3:02 PM Comments comments (1)

There’s a sliver of space between reality and the world as we perceive it that is so small that you sometimes forget it exists. It can expand, of course, but for most of us it waits in obscurity, swallowing the thoughts you feed it like a black hole, keeping them squirreled away in its cavities until you stumble upon the crack and it trips you, causing you to question on which side reality truly resides.

 

My thoughts tend to settle on how Aiden is different from other...

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Simple Updates

Posted by Nicole on April 26, 2011 at 10:25 PM Comments comments (0)

I don’t have anything earth shattering this week, so here’s the scoop:

 

1. VNS: Still ramping up, first week was heavenly, 2nd and 3rd have not been great. 1st week was probably due to the anesthesia giving his brain a much needed break. Too bad they can’t just put him under once a week :) . Would CPS call us in if I inquired about this option?

 

2. Almond oil: Going strong. He definitely doesn’t get enough fat, so we’re keeping...

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