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 of his normal calorie intake via Ketocal, a formula made to mimic the 4:1 ketogenic diet ratio. He was hungry, tired, and overhydrated (we pushed way too many fluids – who actually takes 64 oz in a day?!?), and got pretty sick that evening. I’m certain he’ll never touch any flavored water I set before his lips again. He seized all night. He was finishing a cluster that started over the weekend, so they were incredibly short and no big deal, but it’s tough to see your baby miserable starting a diet that’s supposed to stop seizures.. AND seizing.


Tuesday was better. He had formula in the morning and keto meals the rest of the day. He was so happy to have food he didn’t mind the odd smelling hospital version of keto meals. His g-tube is now officially my best friend. We were close before, but now we’re true BFFs. Aiden is happy as a clam to dip his veggies and meat in ranch dressing or butter, and have his oils sent through his tube! He was fluttery and his body was still a little stressed out from the fasting and vomiting the day before, but he was doing better. One tiny seizure overnight Tuesday.


Wednesday I was able to prove my competency with the meal planning spreadsheet and make his meals up on my own, ordering ingredients from the kitchen as needed. His body adjusted so well to the diet (thanks, I think, to his starting it early) that we were discharged! Into a tornado! Just kidding, they kept us in the hallway with all of the other patients and their beeping monitors while a tornado passed a block away from the hospital. They take such good care of us ☺


He’s home, we’re happier, and I think the diet is off to a good start. He's tired and scattered - not processing completely normally, but those will both get better with time. It’s too soon to tell if it’ll help or hurt, but I’m so glad we’re on our way to knowing. Thanks for all of your support!

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 post didn’t seem to do it justice. I won’t blog every week like before, but maybe an update here and there wouldn’t hurt.


In a couple of weeks, Aiden will start the ketogenic diet. It’s a diet high in fat, low in protein, and almost carb free. He'll be admitted to Children's Hospital for a week to start it, missing the last week of school. Every bite of food he eats will be carefully prepared, measured to the gram, and given in a specific ratio. He will be miserable for a while. But it’s the right decision at this point. 


This is not going to be easy on any of us, but it will be hardest on him. He will be sick at first, and he won't understand why we're doing this to him. I just hope it helps him like it's helped so many other kids, and I hope it's worth it. His little brain needs a break, and if this can give it to him then it'll be worth all of the effort!  Wish him luck.

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 me luck and fun as I begin this adventure!




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.


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He recognized the crystal skull, the tunnels, and a few other props lying in wait for the infamous Indiana Jones. Every few minutes he’d turn my chin toward him to get my attention, pull my face closer, and ask, just to be sure, “Indiana Jones come?” at which point our dialogue would ensue:


“Yes, honey, Indiana Jones is going to come. We just have to wait.”


“Dad, Indiana Jones come. We wait,” (as he wiggled

the fingers on his upheld hands signing ‘wait.’ )


“Two minutes.” “He have hat?”


“Yes, honey, he’ll have his hat on.”


“I need my Indiana Jones hat.”


“It’s at home in Colorado, sweetheart. But you can wear it when we get back.”


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Two minutes would pass by, I’d look off in the other direction, and the entire conversation would repeat, word for word, as if it were playing on a loop.


When Indy finally came on stage by crashing through the ceiling and climbing down a long rope, I literally heard Aiden’s heart skip a beat as he emitted a high pitched squeal, quickly followed by a “Yaw!” as if he were giddying-up his horse.


“Indiana Jones! He got whip!”


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The show lasted 30 minutes, every second of which Aiden was pointing, exclaiming, talking, and cheering him on. Of all of the things we figured he’d love at Disney, how had we forgotten about Indiana Jones? He only wears Andy’s rain hat (his “Indiana Jones” hat)…um… every single day. He fashions whips out of old jump ropes, vacuum cleaner hoses, and anything else he can get his hands on.



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At the end of the show we made our way down the stadium from where his chair was parked at the top to see if Indy would be willing to meet Aiden. We tip-toed up, not entirely sure what protocol was for the real life movie stars and their stuntmen. Sure, Cat in the Hat and superheroes (Spiderman, Wolverine, Captain America, etc.) invited him backstage to meet them, but what would Indiana Jones do after working so hard on those ridiculously difficult stunts in the blazing 95 degree heat for a half an hour do?


When the child in front of us cleared out, Indy came right over to Aiden, got down on his haunches, and started talking to him. Something funny happens when people see that magic Make-A-Wish button: Their demeanor changes, they soften, relax, and they remember why they chose this job in the Florida humidity with whining, spoiled rotten kids dragging their parents from souvenir shop to souvenir shop.


He was met with Aiden’s recounting each of his favorite feats (most involving whips and bad guys):


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“You got hat?” Aiden asks, pointing to his sweaty, smelly, dripping-wet hat.


“I do. I never lose my hat. Do you like my hat?”


“I got hat, too. My home.”


“Do you want to keep my hat, Aiden?”


With that, Indy peeled off his real life hat, shook the dust off a bit, and planted it right on top of Aiden’s head. Aiden’s shoulders rose signaling the deep breath he took in, with no words to describe what he thought at that moment. The smile spread across his face and he was spent. No more recounting the show. No more questions. Just pure astonishment that he was wearing Indiana Jones’s real, live hat.


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There were a lot of moments on our trip that had me close to tears. But this one hit me hard, right in the heart. Make A Wish told us they help kids’ dreams come true – the things money can’t buy. But I didn’t completely understand what they meant until that afternoon. I still have to catch my breath just a bit when Aiden has that hat on. Which he does. Every. Single. Day.


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The whip we caved in and bought him to match his real live hat? That one doesn’t quite pull at the heartstrings as much.


I can honestly say I’ve never seen Aiden as happy as that moment. He will spend 45 minutes sitting in front of my computer clicking back and forth through his Indiana Jones pictures, each one with a story. “We wait.” “Ing Gones fight bad guys.” “He use his whip.” “He give me hat.” And that is the part that makes him smile.


Thank you, Make A Wish, and thank you, Tim (Todd? Ted?) the stuntman. You made my son’s life better, and not just for one small moment.

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 thing called Dravet, while we were still “newbies.”


When the mom mentioned her daughter was going to Disney on her Make A Wish trip in the winter, I was a little surprised. Sure, she had a feeding tube, and sure, she wore orthotics, and sure, she had seizures and couldn’t speak, but did that mean she was dying? I was where many of you are today: unintentionally oblivious to the various organizations around to help sick children and their families.


The mom didn’t really explain Make A Wish to me, but one comment stuck with me: “I know _____ is a little young and may not remember this when she is 20, but two things made us apply now. 1. She has 1/5 less of a chance of making it to 20 than typical children. With our kids any day could be ‘the one.’ 2. This syndrome takes so much away from our family that we need to go now, while we still ARE a family. (She had a teenage son and an elementary aged son in addition.”


Over the years I heard of various Dravet kids getting their “Wish,” from Disney trips to therapy rooms in the basement, to swimming with dolphins, to skiing and seeing snow. As I explored the Foundation, I learned that Make A Wish is for kids with life threatening diseases, even if they are not “dying,” as we all tend to think of Wish kids. And their wishes are truly about things money can’t buy – they encourage people to apply regardless of their financial situation. More on that later.


We struggled with the idea for a long time. Wish kids were, in our eyes, sicker than Aiden. They battled cancer, and surgeries, and extensive stays in the hospital. They were disabled, to be sure. But sometime in the past 2 years our vision of Aiden has morphed into a more realistic one than that of the perfect baby we brought home from the hospital. It’s not that we’ve lost hope for him, but we’ve come to accept that the things he goes through are not one-off events or unfortunate experiences he’ll outgrow. They invade his life, smothering his every experience with electrical shocks and a fog of seizure-induced confusion, hours lost sleeping after seizures or days lost roaming the hospitals for various appointments.


Andy refused to use our disabled parking pass for a long time and it was sort of a window into his path to acceptance of Aiden’s reality. While he’s hesitant to even use Aiden’s wheelchair (preferring, instead, to use the baby jogger our nearly 6 year old boy has clearly outgrown), we’re both starting to come to terms with this seemingly simple fact: Our son is disabled. I know – It sounds so simple to say, but try uttering your own child’s name in that sentence and tell me it doesn’t catch just a little bit as it comes out of your mouth.


When I mentioned I thought it might be time to apply for Aiden’s Wish, since he’s happy, stable enough to be away from a hospital for a bit, and is cognitively “there” enough to understand what’s going on after so many years in a complete fog, Andy didn’t disagree. That’s when I knew the time was right. Not just for Aiden, but for all of us. Earlier would have left us confused about where Aiden stood (and Aiden confused about what the heck was going on), and later might have been too late for his brothers (and us) to accept what was happening without embarrassment or shame. After all, at 9 ½, Owen is not going to enjoy the same things as his 5 ½ year old brother for too much longer, and pretty soon he’ll distance himself from him a bit.


It was with very mixed emotions that I filled out the online application. You see, I didn’t quite know what to say. How do you explain to someone all that comes with this syndrome in 100 words or less? How do you tell them you have so much hope for his future while being realistic about what he’ll be able to do?


Imagine my surprise when the phone rang the very next day. Thinking it would be another hospital scheduler booking, confirming, or canceling an appointment, I answered uninterestedly, but quickly changed my tune when our Wish coordinator explained how the process would work. They conduct a phone interview, send our paperwork to our neurologist, pediatricians, and the others on Aiden’s team to confirm diagnosis, prognosis, and any other medically relevant info, and then Aiden goes to their Wish Center to make his very own Wish.


Knowing nothing is ever this easy I started to pull out all of Aiden’s doctor contact info. “No need – we know who they are and will take care of all of that for you.” And that is the first time I started to cry. Just sat down on the floor and let the tears flow. I can’t explain what it feels like to have someone doing something amazingly generous for you, and to have such an intimate understanding of the families that they take care of the paperwork for you. I am still in awe of the class Make A Wish showed in every step of the process. The next day (less than 36 hours after my initial online application), she called back to say the doctors had agreed Aiden should qualify as a Wish kid and they had all of the paperwork to begin the Wish process and would likely have the Wish ready in the next 3 months. 3 months?? I thought these things took way longer!


The next few days brought endless brainstorming: What would Aiden wish for if he could conceive of things he doesn’t have direct experience with? To meet Toby Keith (his favorite singer)? To see Optimus Prime in person? (Do the Transformers even do that?) To have a therapy room built in our basement? We thought of so many adventures and things he’d love, but in the end only one seemed to capture all of them at the same time: Disney. He had no idea what it is, so they relied heavily on us as his parents, but truly, he could meet/see/do just about everything he loves in DisneyWorld, and though the trip would only be a short period in his life, his love of pictures would keep the memories alive for years to come. (Well, that and the fact that if Toby Keith wanted to sing any other song than “How do you like me now,” Aiden would have been so distraught it could have ended quite poorly.)


Fast forward a few weeks through Make A Wish of Colorado researching, booking, confirming, and everything else planning a vacation entails, right down to notifying the airline of the service dog’s presence, and we were booked and ready to go. I could tell Andy was still struggling with Aiden’s qualification as a Make A Wish kid, until they sent us to Barney Live a week before our trip and Aiden had a tonic clonic seizure right there in the Make A Wish suite for all to see, just from the excitement. I’m pretty sure that experience made him feel better about this whole thing!


All that was left was to go to Disney World, and that is where the true adventure starts.

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 the button for Aiden, again, to make the train come out of its tunnel and up over our heads. One was sprinting to our dinner table so quickly that Owen didn’t even have time to find napkins after he’d spilled his pop. While Andy and I chastised the 9 year old for being careless, the volunteer wiped it up proclaiming how often it happens here.


Yes, I said volunteer. Over 1500 volunteer shifts are staffed this week alone here at the Give Kids The World Village, making our stay possible. One even greeted us at baggage claim this afternoon, guiding us to our rental car. As much as Andy and I like to stay in control of things, it was actually ridiculously nice to just follow the veteran who knew her way around the airport.


I can’t quite describe how we’re treated here. It’s not like kings – they don’t serve us or pander to us as if we’d paid them heartily or are potentially going to give them a bad review on their company’s website. No, it’s a different feeling entirely: So much better. They are honestly here to make sure we don’t have any worries and smile for 7 solid days, the burden of caring for and financing a sick child lifted off our shoulders if only for a week.


I tried to wave the delivery man away as he dropped off the Aiden-sized wheelchair they had ordered for us 5 minutes after we pulled into our villa’s driveway. I waved him on with an “Oh, we brought our own wheelchair from home – Thank you, though!” The nice man just smiled and nodded, unloaded the adorable little yellow chair, and said, “I know. They thought this might come in handy, though.” He tipped his hat and went on his way.


We’ve used it all day, eliminating the need to transfer heavy wheelchairs from cars to driveways, to inside. It’s the little things like this that make this trip so special. Well, that and the carousel in the middle of the village that they can ride as often as they want, turn after turn after turn. And the all-day free ice cream. And the life-size Candyland board on which they’re the players. And the sweet kitchen chef who made Aiden an entire gluten free pizza tonight, only because he asked.


Who ARE these people? I am humbled by their complete generosity. One man built a whole center for the train-loving Wish kids, including a model trainset the kids operate that cycles through day and night in a 1950s mountain town, complete with the typical Florida afternoon thunderstorm. Did I mention the life-sized train that runs around the building? Or the also life-sized dinosaurs lurking in the mini-golf course?


We are so lucky to have this experience, and even as I write this I know my words aren’t doing justice to the generosity, understanding, and open hearts these angels have bestowed on us today. Thank you, Make-A-Wish and Give Kids the World, for truly giving Aiden and our family the World!

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 immensely grateful for the nurse who, by all accounts, has dropped from the sky, living a gluten free/dairy free diet herself, dog-loving, Transformers-enduring wonder woman she appears to be. But at the same time, what on EARTH am I going to do with 3 hours to myself everyday? 


Aiden has taken to her, she appears more-than-competent, and Lexie loves her (too much?). So why do I feel like I'm going to be floundering come Thursday? I will be strong and happy for him. He is beyond excited, and I should be too. I am. Or I will be. But Holy Cow, this is a lot harder to process than it was when Owen and Alec climbed aboard that big yellow bus. Stay tuned...

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 it with no problem.” “This was my X year old’s first 14er.” “Bierstadt is the easiest when it comes to Colorado’s 14ers.” Pshaw. Whatever. I have only two things to say on that front:


1. Those people are lying. They may have SEEN a 6 year old climb it, but it certainly was not their own 6 year old. Had it been theirs, they would have not added the “with no problem” portion. “With minimal whining,” “With only a few blisters,” or “Amazingly!” would have been more appropriate.


2. Those people have never worried about being 2.5-3 hours from a car, which could then drive out of the dead spot known as Colorado backcountry, only to contact paramedics 3.5 hours after an emergency started.


3. I couldn’t stop at 2. Those people have never carried a 5 ½ year old on their back.


I feel great about what we accomplished despite not making it to the summit. Only once on the way back down when two obviously experienced hikers’ jaws dropped as they said, “Did you summit like that?” was I tempted to smile and say, “Yep!” Mostly I laughed and told them my family was heading to the top but I had reached my limit. And mostly I was glad about turning back, especially the last 15 minutes of my 2.5 hour total hike.


Owen and Alec, it turns out, only went another ½ mile or so past me before they turned around, exhausted and feeling amazingly proud of getting to the base of the summit. Again, to those people: Whatever. My 7 and 9 year old are in good shape and should be proud of how far they came. And they got to touch snow on July 23rd.


So there’s the “We can move mountains” portion. I’m not sure Aiden appreciates the whole 14er hiking thing – he’s happy and agreeable, but I felt his belly sweat on my back and I know that can’t be comfortable for that long….


Here’s the raw, bare, selfish emotion part: I hate that his seizures rob him of so much in life. I hate that they come in the night, scaring him far worse than any of the imagined ghosts we all feared as children. My heart aches when he jerks and twitches next to me in bed, eyes wide open, pointing to something he sees in the air above his face, clearly panicked but not even having the body control to scream out, or run, or say “I’m scared.” I hate most the words that escape my mouth during those times. Words of comfort, but to whom? “Don’t swallow these meds – let them sit in your cheek so they can help it stop.” But it doesn’t stop. “Hang on, honey, try to go back to sleep – that’ll make it stop.” But it doesn’t stop. It doesn’t stop. It doesn’t stop.


I am frustrated by our constant struggle to tweak his diet, adjust his meds, walk on eggshells to avoid seizures that come like freight trains no matter what we do. I don’t know what to do. The doctors can’t help, I can’t help, and I see what his little body goes through multiple times each week and can’t help but wonder how much it can take. Sometimes I see pictures of him (on the mountain, for example) and think of how they look like pictures we’d remember him by if he were gone.


I don’t understand how he can keep fighting, how he can not be so scarred by what’s happening to him that he just shuts down. I am haunted by the mom who lost her child after a short, 3 minute seizure in her arms. I would understand if his body finally gave up – I wouldn’t blame him at all. And that’s the ugly truth right now.


I know this isn’t healthy, that I shouldn’t dwell on this stuff, and I usually don’t. But sometimes it stares you in the face and makes it all but impossible to engage in normal conversation. I could chuck Facebook right out the window about now, if only I didn’t use it to connect with other Dravet parents in our frantic search for something to help our children.


A little good, a little bad, another roller coaster week.

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 stiripentol, the med we import from France, has afforded us in the past year and a half. I would never have believed it possible, but Aiden continues to defy our expectations.


I don’t have any confidence this streak will continue, but Thank you, God, for 14 relatively clear-headed, healing days. It must do wonders for his little brain.

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, but closer to my mom, sister, and the family members we’ve missed for so long. Mom, Dad, Mother in Law, Father in Law, Sister in Law, and niece are all there to welcome us “home,” and a fabulous evening makes me miss my husband just a little bit less.


Day 4: I went out with some girls, mostly wives of Andy’s best friends. We had a nice dinner and conversation, and though I kept my phone on my lap at all times no emergency call came through. Turns out Mom, my little brother, and his girlfriend fielded their first full blown seizure all by themselves and Little Bro forbade Mom from calling me. Despite my dutiful doubts as his big sister, he has shown some serious “stuff” lately and I am respecting him more and more as time goes by.


Day 5: I sit in at the table chatting with Mom, Sister, and Maria, our childhood best friend. We suddenly hear engines rumbling and notice my oldest children are missing, along with that little brother of mine I bragged about so just a minute ago. “Oh, that’d be the 4 wheelers Andy fixed up for his nephews.” Smiling, we all head out to the deck expecting to see Andy taking his finally-good-for-something nephews on rides around the backyard. Instead, we see the back of a bony 45 lb little thing with a helmet so big I swear it covers his entire ribcage, speeding away from us. By himself. That’d be my 7 year old, who watched Uncle Andy shift enough to figure out how to get out of the babyish 1st gear we had limited him to. He now knows all 5 gears.


Day 12: We are up at Duck Lake, our grandparents’ (and now Aunt and Uncle’s) lake in Wisconsin, in the pouring rain. I awake at midnight next to Aiden jerking and scared in a complex partial seizure. His eyes dart around and lock with mine for a nanosecond and I hug my poor terrified boy and say, “I’ll get your meds, Sweetheart, just hang on.” The seizure generalizes in an instant, his arms still wrapped around my neck, and I feel myself being strongly choked. His hands have balled up into a fist and are pulling my hair in the most excruciating tangle as my eyes get wide. I try to yell for help, but only a faint, “Owen, Help me!” escapes, and my 9 year old is awakened from his slumber. He doesn’t know what to do or why I need help at first, but heads toward the meds as visions of him drawing up the syringes and inserting them in Aiden’s crevices are seared in my mind. No child should have to rescue their mother from being choked by their little brother. (Note to others here: Don’t hug your strong seizure-prone children with arms around the neck while they’re in ANY kind of seizure.) The next 2 seizures that night are mundane.


Day 18: Aiden is playing in the wading pool at my sister’s house just like all of the other children! He’s been playing for more than two hours and he is going strong. I am so happy we’re able to be outside with everyone else, as a few summers ago this would have been impossible. Life is amazingly good.


Day 19: We’re playing in the wading pool more on this 97 degree day. The kids are having a blast and though I keep my eyes on that little chubby bottom with the plumber’s crack ever present at the top, I take a minute to re-tie my bikini top. I have untied it and am about to start the new bow at my neck when I see Aiden fall (not out of the ordinary). He doesn’t come up out of the pool. My arms are on him in a heartbeat, but he is so heavy and so slippery that it takes me what feels like an eternity to fish him out of the 18-inch deep water. This is one of my worst nightmares: He has had plenty of seizures in the water before, but they’ve always been in my arms or in his lifejacket, both of which prevent the inevitable gulp of water as he goes down in the first tonic phase of a seizure. That is what’s hardest to explain to others who say they will watch him in the water while I take a break or go to get something from the house: It happens so quickly, and the first back stiffening/ wide-open-mouthed moan at the start scares me the most around water. I fish him out and lay him on the ground, Lexie on him instantly, trying to lick his face dry. I swipe his magnet to activate his VNS and silently pray that he’s not going to drown, that the ambulance won’t need to resuscitate him because I had the nerve to retie my top. (I am 100% naked on the top at this point, by the way, and I don’t much care. My niece, nephew, and all of the neighbors are likely scarred by this scene but I am not exactly aware of them enough to notice.) The seizure stops and he lies there, grey and lifeless, for about 5-7 seconds before he takes his large gulp of air, the sound of which is music to my ears. That last phase of a seizure always gets me, but never more so than when I’m fearing he’s drowned. Day 19 brought me this peace of mind: 3 years ago I would have called an ambulance and spent the day at the hospital making sure he didn’t have fluid in his lungs and getting pneumonia-prevention shots. Today we continued on, monitoring his oxygen and heartrate, and we made it through one of our worst fears.


Day 21: Knowing that his seizure for the week happened yesterday, Andy says, “You bet you are,” when Aiden announces he’s going waterskiing. The boy loves to do what everyone else does, and there’s no safer time than a day post seizure for him to try. We slide his feet into the skis, I climb into the boat, Andy in the water holding Aiden, and we get ready. I figure he’ll try but not get up like he did last year and we’ll have made the little guy happy. Imagine the shock, excitement, and sudden terror on my face when he not only pops up but continues skiing across the lake. There is my baby, 30 feet away from me, in the middle of the lake, 30 feet away from Andy standing in the water whose congratulations are getting farther and farther away. He is so pleased with himself that his smile makes my heart swell, overpowering the “what if” thoughts swimming in my mind. His strength fades quickly and his bottom sinks lower and lower toward his skis until I finally let go of the rope, dropping him in the middle of nowhere, his head the tiniest speck (but upright speck!) in the middle of the lake. We circle around to pick him up and he is grinning from ear to ear. “I hay hi-id,” “Ooh gum back,” and “I gee” are uttered over and over as we pull him into the boat. (That’d be “I say, ‘hit it’,” “You came back for me!” and “I skied!”;) He is on a high for the next 30 minutes as the other boys ski and the excitement-induced seizure doesn’t come until we bring the boat in to the dock. Sometimes timing is everything.


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Me, still relaxed. Aiden, still close enough to Andy for comfort.



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The smile is worth it.

Day 22: The day has been beautiful, Aiden recovered quickly, and we’ve been fishing, skiing, playing, and enjoying each other’s company the entire day. The lake is like glass, we head out for a dinner cruise, and Aiden says he’d like to ski again. I am not so sure but Andy reminds me he needs to live as much as possible. I am not sure of the idea and haven’t said “yes,” but Aiden thinks he’s going skiing. He must be coming down with something because just the thought of skiing this time is enough to bring on the seizure. Crisis averted in my eyes.


Day 30: Random but likely seizure-induced vomit. That’s all I’m saying on that front.


Day 32: The week is sunny and gorgeous, Andy has rejoined me in MN, and life is good. Our musical beds and homelessness is starting to wear on all of us, Aiden’s diet has been tough to control, and I am looking forward to coming home. We couldn’t have asked for a better time at the lakes, with friends, with family, and we are amazed at how blessed, lucky, and fortunate we are to have been able to spend a week having fun. There are seizures here and there, but nothing noteworthy. Most of all, we’re happy to be a family.


Some Random Vacay Photos:

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New rope swing was a hit!

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Just love Andy's face!!!

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 without my boys since Andy’s halfway across the country.


Somewhere between childhood and middle age the memories we recreate in our minds come full circle and we begin to see how those same experiences may have been lived, or even created by someone else in that time. Most visions I recall from 25+ years ago are really half-truths, physically cut off at what would be considered eye level for a small child. I can see the skirts of women working in the kitchen, the pockets of men taking fish off of hooks, and the little eaves under counters and couches we, as grown-ups, forget even exist. What I can only now see, 25+ years later, are how those visions were formed in the first place.


I see, now, that the matt covered in terry-cloth with blue and purple horses is actually quite small. My sister and I spent years sleeping on that matt, which was stored in the cabin’s sliding closet doors (also with a horse right at child-eye level). I hear my own children’s hushed voices drifting down the hallway that is not quite as long as I remember it being and realize, now, that the adults heard every word we thought was said in the utter and complete secrecy of a dark bedroom past bedtime.


I realize the preparation each meal required, though it seemed to appear out of nowhere just as we were running up the gravel pathway from the lake, changing out of our wet clothes in the nick of time. I see the afternoon tennis game on the television and understand, now, that Bapa needed that break from the chaos we grandchildren created, no matter how much he loved us.


Smooch pulled out a picture book for bed tonight, and written in awkward black crayon on a few pages were the emerging letters B-e-t-h. To think my older cousin, who colored in that book years ago, is now the mother of a high school graduate who has her own memories of growing up at this lake was a little mind-boggling.


Some things are remarkably different now (such as my being about to upload this post via the neighboring cabin’s unsecured Wifi, my slumbering special needs child still snoring next to me), life’s basics are exactly the same. As children we feel we’re the most important the world: As adults, we live to make children feel like they’re the most important thing in the world.

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 whining, no tears, and no seizures. Praise!


New beds every 2 nights (when all of your family is here you have to share the disaster love evenly). 


We were in Old Navy, starving, a few minutes ago, killing time while the eldest is at a playdate and the 7 year old turns to me at the checkout and says, "Mom! Can we have those?" pointing to the usual jar of snacks/candy on the register. I start my auto-reply, "Honey, Aiden can't..." and am interrupted by the 7 year old finishing his sentence, "They're gluten free!! It says so right here!"


Love, love, love that kid. All of them - rock stars, again.


p.s. Individually packaged Fruity Pebbles Marshmallow Krispies are, indeed, gluten free. And ridiculously tasty on an empty stomach.

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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Had to steal a picture from last weekend - I haven't quite mastered all 3 in the pool AND the camera yet.

Responsibility-shirking wake up call #1: Andy, apparently, does not think turkey wraps count as prepared dinners anymore. He is also not impressed with BLTs, pizza, or anything that could have passed as his lunch earlier that day. Duly noted. I thought the cold turkey wraps were the perfect finale to a 90 degree day spent at the pool, but he kindly reminded me it was not 90 degrees in his office building all day.


Responsibility-shirking wake up call #2: Aiden’s neurologist (not his epileptologist, but his general neurologist), whom we saw today, wants to know whether the lack of balance and subsequent constant stumbling is due to the seizures or the meds. Huh – I thought he looked great lately. He would also like to know whether we’re at 100 eye flutters per day or closer to the 600-700 he estimated based on the number he counted just in the few minutes he observed him. Double huh.


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The fact that his eyes have been closed fluttery in every pic lately should have tipped me off sooner...


I should probably call the orthotist out here to have new orthotics made for my wobbly boy, track his eye flutters again, and up his meds some more to try to get some semblance of control back. Ooh, and I should probably dig out my cookbook and assemble some actual dinners complete with side dishes again. Maybe even make two dinners again instead of one entirely gluten free one? But I’m not going to. Because we’re happier than we have been in a long time.


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Shameless picture of Owen and a waterfall, just because I can.


You do it, too – that neverending balancing act between work and play, worry and happiness. It may be a little more extreme in our house, but the idea is the same. Sometimes it’s good to be off balance, though, if only because you have the freedom to do it. I feel so blessed.

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!


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All kidding aside, though, I'm very proud of him. And of Lexie too. Next stop: Kindergarten.

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 graduation gift for my husband? Hey, wait! Did you know my husband finally finished his MBA? He started the fall Aiden was born and has worked full days, headed to class on weeknights, gotten up early on Saturdays to study, taken midterms, finals, and completed just-shoot-me-now group projects ever since.


I remember calling him while he was at class that Thursday night and saying, “No need to rush home – Finish your class. But I’m in labor, so when you get home we’ll head to the hospital.” The next fall brought the first of many calls, again while he was in class, “This time it’s an emergency – Aiden’s having a seizure and they can’t get it to stop. Meet us at HCMC in the ER. Now.”


With all we’ve had going on in the past 6 years, I am SO proud of him for sticking with it, for not complaining, and for still being there when we needed him. I have no idea how he does it – You’d hear me complaining every night I had class, every exam day, and just about every hour in between.


Back to those in-laws and the zoo. Okay, not the zoo – even better: U2. Two years ago Andy bought me U2 tickets for Christmas. We’ve seen their concerts religiously and were so excited for them to perform in Minneapolis. That is, until they had to postpone the concert for a year and we happened to move to Colorado during that year. We finally, reluctantly, returned our tickets realizing we weren’t going to be able to make it back to Minneapolis for our long-anticipated show.


In-laws! Their surprise trip just happened to coincide with U2’s scheduled concert in Denver and we were able to go at the last minute! Waiting for them to come on stage after the Fray opened, high up in the stands at Invesco Field (formerly Mile High Stadium), looking out over the sun-bathed mountains we looked at each other and connected like only we can. Bliss.


Dravet who? We’re going to U2.

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 stairs and it’s quiet for quite some time. So long, in fact, that we yell up, “Aiden? Are you okay?” to which he replies, “Ah-gee.” So he is not seizing, and we resume our respective activities.

 

“Mom! I ngee hep.” As usual, he can’t find his pants. Though they’ve been on the same shelf for 8 months, right at his reach. The closet door is even open for him. I don’t understand why this task continues to elude him.

 

“Just put some pants on, Honey. They can even be jammy pants.”

 

Silence. For another 5 minutes at least.

 

“Aiden? Are you okay?” Silence. “Aiden, ARE YOU OKAY?” Silence. Andy and I simultaneously bound up the stairs. Instead of him lying in a heap on the floor as we’re expecting, we find this:

 

 

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Note Big Brother's MP3 player, a prized item not usually within his reach. And the complete lack of pants.

 

 

You just can’t make this stuff up.

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 in snuggly blankets, picked the dandruff out of his baby-soft scalp by hand, and cried every hour the first several months I was away from him during the day at work. (Is this a good time to mention Owen, of all my children, hates smothering the most? Or that he hates being warm, prefers his dad’s shoulder, and does not appreciate your touching his head? Maybe that’s the reason for his “colic” the first 3 months?)

 

When Alec was born, I mothered him in similar ways, but he appreciated it. He was my little buddy, loving the snuggles and warm blankets, the closeness, the smiles I’d bestow on him. Still, all of this is in the realm of “mothering” I thought I understood at the tender age of 23.

 

Aiden’s entrance to the world was much the same, except he never voiced his opinions. On anything. He was laid back, cool with whatever I threw at him, and loved everyone equally.

 

In the past 9 years I’ve learned a lot about mothering. I know that every child is different, and that none of them conforms to what I *thought* I knew about what it means to be a mother. But no one has shown me this as much as my laid-back, easygoing Smoochie Face.

 

It turns out that mothering involves a hell of a lot more than blankets, snuggles, and kissing boo-boos. It takes complete sacrifices of everything you used to love, but replaces it with surprises you could not have imagined. At one point I would have taken most of what stops me in its tracks with amazingness for granted. Moving away from family, hiking, family walks – all of these would seem typical and mundane in my previous mothering dream, but today? Today I am humbled by the seemingly simple experiences we have that are downright mind boggling for our family.

 

Yesterday Aiden (who has shown great improvement since starting a gluten free diet 3 weeks ago) apparently swiped some bread from the table at our dinner party. He spiraled downward with two grand mal seizures in two days in a row, the second on a large rock resulting in a huge, fat, bloodied, split open lip and loose tooth. He endured another seizure in his sleep.

 

Years ago that would have left us housebound for the foreseeable future. Today? Today we did this:

 

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And this:

 

 

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And this:

 

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 Pike's Peak, from the top of Devil's Head

Our days of carrying him on our backs to see God’s awe-inspiring world in all its glory are numbered. (I think there are about two years left by my back’s calculations.) But until then, one thing I’ve learned about this thing called mothering is that it's my job is to give my kids the most amazing experiences I can humanly give them and let them decide what path they want to take. It’s possible that when Aiden is a teenager he may have no way to get to the top of a mountain. So damnit, I’m going to take him now, while we can.

 

We met a couple at the top (It might be these people):

 

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Who teased that they’ve only lived in Colorado for 18 months and didn’t need to climb EVERY mountain in the first year. I smiled and commiserated, but pushed back the feeling of inner urgency to do it now, while we can.

 

So here’s my mothers’ day wisdom: Mothering is not just about love, or kisses, or playing Trouble (grateful though I am for Mom’s commitment to our game each morning). It’s about inspiration, reordering of priorities, and respect for individuals. This is what I hope to pass on to every one of my children, regardless of their mental capacity or social standing. Happy Mothers’ Day to some of the most inspirational Tiger Moms I know!

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 kids his age, no matter how his day has been. I don’t mean for it to happen, and I don’t wallow in them – Half of the time I am pleasantly surprised at how easy it is to celebrate these differences. How precious is the fact that this giant 45 lb creature still thinks he’s a lap dog? He’ll curl his long limbs up underneath him, not noticing how they stick out on all sides of my small lap, nuzzle his cheek to mine, turn the corners of his mouth into a dreamy dazed smile, and settle in, completely oblivious to the fact that our heads are at the same height, I can’t see around him, and my thighs instantly fall asleep under his weight.

 

He is so excited to see his brothers at the end of the day that he stumbles out of the stroller, clods over in his light-up Spiderman boots (though it is nearly 70 degrees outside), and gives the 9 year old a big bear hug. If the 9 year old’s friend happens to come out of school first, well, he receives the same bear hug and smiles out of surprise while looking around to make sure no one else has taken notice of this embarrassing fiasco.

 

I love his differences, and they’re fairly easy to spot even without knowing he suffers from seizures. But then that crevice between reality and what I perceive to be reality comes up and I question my own sanity. Obviously he has special needs – I’m not blind. But how significant are those special needs? Do his charm and easy-going nature fool others into thinking he’s not as needy as he truly is? Do they fool me? I observed him during preschool one day with a few other school district team members in preparation for next year, and could see them breathe a sigh of relief at how easy he seemed to be to educate. He skipped along through each activity with a team member’s help, never putting up a fuss, complaining, or needing medical attention. It was too loud to hear him talk, so he honestly looked like any of the other kids in the class, if perhaps a bit less stable.

 

But then, what are “significant” special needs? Emotional/Oppositional behavior? Inability to relate to others? Medical needs? Severe learning disabilities? I guess I don’t know. My perceived reality is that someone who is dependent on me for every daily function (getting dressed, feeding, breathing sometimes, toileting, even getting in the car) has “significant” special needs. The fact that he, if left to his own devices, would walk around stark naked not because he thought it was funny or more comfortable like any other 5 year old, but because he truly doesn’t understand the necessity of clothes, even in the dead of winter, seems to be significant.

 

Perhaps I’m with him too much to truly know. Maybe I’ll just step right on top of that sliver of space and force it back into oblivion. Life is a lot less confusing when you convince yourself you’re sane.

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 it in his regimen.

 

3. New diet: Gluten free. We’ve done this before in short stints and not seen any improvement, but after doing other much more restrictive diets this one is a complete no-brainer and ridiculously easy to implement, so why not? Plus, it’s recently helped my dad’s odd pharmaco-resistant rashes and blisters significantly, so there’s more genetic support than there has been previously. (Can I just reiterate how easy this diet is compared to others? I feel almost guilty when I think of those on the MAD or the ketogenic diets. Aiden doesn’t even know he’s on a new diet – score for me!)

 

4. Midazolam (buccal Versed): I love you. If there were a company who made you other than the generic one our pharmacist orders from, I would send them a batch of cookies and the sweetest thank you note they’ve ever received. How great is it to roll over, swipe his VNS magnet (to no effect yet), then draw up a syringe full of Versed, squirt it in his cheek, and massage it while the medicine absorbs and calms his seizure? So great.

 

5. Dear Husband: I hope to one day sleep in the same bed again. But not right now – we both know these nighttime complex partials are too scary, lengthy, and undetectably subtle at the moment. This, too, shall pass. We’re working on getting a new Emfit convulsion monitor that might detect these. In the meantime, we’re going back to jingle bells on all limbs. I will see you again, Honey, I promise! Xoxo.

 

6. School: 10 days left of preschool and counting. Remember when you were in school and you watched the clockhands move, ever so slowly, around the ginormous white face? I’m there. Preschoolers are great, and fascinating, but… well… I’ve run out of books to read at the moment.

 

That's all for now folks!


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