Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Up Down, Up Down

Posted by Nicole on July 12, 2011 at 12:21 PM Comments comments (11)

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!!!

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!

Flight Paths

Posted by Nicole on April 18, 2011 at 9:26 PM Comments comments (0)

ECFE (Early Childhood FAMILY Education), 9:30am 2006: 8 stay-at-home-moms, including me, are gathered together in a large circle in a small room, fluorescent light buzzing overhead, as we sip our coffees and hot chocolates, preparing for the day’s discussion. We have all spent 30 minutes playing with our 3 year olds in the next room, their siblings safely tucked away in “sib care,” and have left the 3 year olds with their classroom teacher while we take the next hour to educate ourselves about parenting, learning styles, and child development in general, facilitated by a “parent educator.” Aiden, 10 months old, was still 1 month from his first seizure, and I was naievely unaware of the change my life would take.

 

Most of us look forward to this blissful hour in the company of other adults who understand, knowing it may be the only hour of uninterrupted adult conversation we enjoy in the day. I stir my hot chocolate observing the moms around me, noting their clothes, their shoes, their expressions of alternating exhaustion and perkiness. Looking back, there was one mom who seemed just a little more tired than the rest of us, whose hair was just a little less perfect, and whose clothes were just a little more out of date than ours. (Note: We were all moms, so none of us was sporting the latest style, but still :)  )

 

I suppose I could have asked her what exactly had been going on with her son that made his struggle with potty training so much more difficult than the rest of our kids, or why he didn’t seem to care about making friends, but I didn’t. Of course I didn’t. And she didn’t offer, which probably just made me wonder if she knew he was different. I realize now she absolutely knew.

 

The topic of the day was “Your family’s flightpath,” and our parent educator walked us through the exercises of identifying the individuals our children were (point A), the individuals we hoped they’d become (point B), and deciding on our flight path to get from point A to point B. She stressed the importance of flexibility: How many times have our own flights diverted from the path only to end up at the promised destination, if perhaps a few minutes late, and we were none the wiser?

 

I knew what I wanted for my children: that they be respectful of others, that they love God, that they know right from wrong, and that they respect themselves. But how do we get from selfish toddlerhood to altruistic adulthood? 5 years later I’m still struggling with this one, though less deliberately and with less focus than before.

 

I know I can’t focus on superficial activities like sports or looks. I know I must be an example of respect in how I treat them (This is a hard one for me! I much prefer being “in charge.”;) I know I must teach them to love God and everyone around them. This is a lot harder to do, however, when 75% of my time is spent parenting or assisting their brother.

 

Maybe that’s one of the little surprise blessings we receive from having Smooch in our lives – maybe, just maybe, I’m not capable of the selfless love I wish for them, and perhaps he’s as much a part of our flight plan as the “unexpected” storm that pops up, necessitating a re-routing of the plane.

 

If I could go back in time I’d ask that mom what her flight plan was, and how she was dealing with the detours. I’d pick her brain about everything from dealing with the rest of us selfish, superficial, ungrateful moms with no cares in the world but potty training a typical child to how she kept her other 3 children on the intended flight path. Hindsight is 20/20 – I can’t fix what I missed out on back then, and I am certainly making a truckload of mistakes now, but I’m realizing more and more how lucky I am to have these 3 unique children who teach me more than I ever could have imagined.

VNS Implantation

Posted by Nicole on April 7, 2011 at 10:36 PM Comments comments (4)

Aiden had his Vagus Nerve Stimulator (VNS) implanted today. It's like a pacemaker for the brain: It's a small battery operated generator in his chest that sends electrical stimuli up two leads to his left Vagal Nerve in his neck every few minutes. Over the next several weeks we'll go in to the hospital to have the signal strength/frequency ramped up to a functional level.

 

The constant cycling of electrical stimulation should help prevent a few of his seizures (50% of patients see a 50% reduction in seizures), and when he does have one we can swipe a strong magnet over his chest to activate a longer stimulus that may help interrupt the seizure. If nothing else, it will likely shorten his recovery period and perhaps improve his cognition just a bit.

 

Before:

 

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After:

 

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This incision is "a lot larger than normal," and very different from the two small ones they described during pre-op.

They didn't say why.... I don't want to know.

 

(And now, a mere 7 hours after surgery, he sits happily on the couch staring at his "owie" covered with a bandaid. Shh! Don't tell him that's just the IV site and the real owie is about 5 inches long and dark red on his neck :)

 

This kid endured a seizure this morning to start things off, then fasting, pokes, prodding, intubation (a tube down your throat is no fun at all), a pretty lengthy surgery, and is back to almost 100%. He is full of snuggles and kisses and, bless his little heart, doesn't even understand why. He doesn't even question it, to be more accurate. Now here's hoping he forgets about it soon and most importantly, that it helps!

Let them help.

Posted by Nicole on April 1, 2011 at 10:27 PM Comments comments (1)

For the record, I’m not above asking strangers for help. Not one bit. Strangers are the greatest because – here’s the thing – YOU’RE NEVER GOING TO SEE THEM AGAIN! Talk about no strings attached!

 

I left my kids with one yesterday, in fact. I don’t want to sound like a martyr going into details, so let’s just say it involved an ill-timed seizure, my lack of preparedness, and a husband still-at-work-at-6:45 pm.

 

So here’s the deal: Strangers often want to help but don’t know what to say or do. Take charge of the situation, Fellow Dravet Parents, and delegate! Instead of complaining that “No one offered to help. No one cared/understood/insert verb that my child was seizing in the very public place of (insert location),” use your first-responder training skills and delegate. We’re trained to say, “You- Call 911. You – Clear the area. You – Take note of the time. You- watch for the ambulance.” while we assess damage and start chest compressions, but how many of us actually use these skills when our own child is involved?

 

Yesterday I am proud to say I called upon my CPR/First Responder training and delegated. (Note: no chest compressions were involved, thank-you-very-much. ) Did it involve leaving my children with a complete stranger? Maybe. But I still think people were glad to help. I feel empowered even though I might receive negative comments. I left him sleeping, post-ictal, as I took a load to the car because I never would have been able to get it all there with him in my arms during the chaos that ensues after soccer practice.

 

Angela (Angie? I don’t recall…;) was happy to help. Plus, she was chasing her two year old just minutes earlier, which totally proves her trustworthiness. Strangers don’t “offer” to help because they don’t know what to say or do. It’s up to us to ask them, and more often than not they are more than willing. Just like the people gawking at emergency situations: They’re gawking, jaw-dropped-like-imbeciles because they’re simply not trained to jump into action. It’s up to us to take charge, delegate, and focus our attentions on the tasks at hand. This isn’t some reality tv show, after all. This is our life.

 

Can we handle this on our own, Dravet parents? Usually. But there are a lot of people out there observing who want to help but just don’t understand or know what to do. So instead of martyring ourselves and handling it all on our own and then complaining afterward, why not make someone else’s day and let them help? I honestly think Angela (Angie? I suppose I’ll find out at the next practice) was happy to help. She sure watched him closely. That’s my advice for the day: Let people help – Just tell them what you need, and let them feel needed for the time being. They are, after all, our village.