Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

Blog

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:

 

Photobucket

 

 

After:

 

Photobucket

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!

La Dolce Vida: 0, Lexie and Nicole: 2

Posted by Nicole on January 14, 2011 at 10:41 PM Comments comments (2)

I don’t know what’s better: The sound of Aiden giggling, or the sound of him sleeping. Seriously, it’s a toss up. I’m just saying.

 

Here’s where we sit this week:

 

1. We are contemplating the VNS (Vagal Nerve Stimulator) for him based on our latest neurology appt. It’s like a pacemaker for the brain – It’s a device implanted in his chest that sends electrical impulses to his huge Vagal Nerve every 30 seconds or so, based on how we adjust the settings. It is supposed to interrupt seizure activity and keep his brain chugging along as it should be. Side effects include a flutter in his speech whenever it’s discharging, the side effects of a general operation for implantation, and possible itchy/scratchy throat. On the other hand, it’s not another med to slow his learning down and may be able to attenuate those darn eye flutters he battles everyday. Plus it comes with a really cool magnet Lexie could wear and, as she’s snuggling him during a seizure, she’d be upping the impulse from the device with the magnet in her cape helping to stop the seizure. If that’s not cool, I don’t know what is.

 

2. I need school to scale back their teaching style. Yes, it’s great that the other 5 year olds are learning how to measure with a tape measure. Rock on, General Ed students! But seriously? Explaining to Aiden that “It’s a little more than 3 inches, but not quite 4 inches, which means it’s probably about 3 and a half inches” is the biggest waste of 45 seconds I can think of right now. Let’s focus on this: “Look! I see a number one! And a number two!” And leave it at that.

 

3. While we’re on that topic, Let’s forget the whole “A-I-D-E-N” schpeel and stick with “A-I.” I’ve tried to explain that we’ve been stuck on Letter B for 2 years now, but I don’t think anyone’s listening. And when he says, “Up, gow, Ay-Ayen,” He is saying “A.” Just a little FYI.

 

4. The sound of Aiden sleeping is great. So great that I pretend it’s there even when it’s not. Like at 4:35 this morning, for example, when he was obviously seizing and my sleepified brain thought, “It’s best if we just ride this out..” and promptly fell back asleep. Did I check his pupils for proper dilation? Absolutely. But when they failed to change based on the light I shined in his eyes, I took note and bedded right back down into that pillow next to him.  Epic fail, EMS Mom.

 

5.  I'm not ready to claim success and I don't really want to talk about it yet (so don't ask how he's doing), but he's been in undies for 7 days. 

 

6. La Dolce Vida: You tell me “No dogs allowed,” every time we walk in. Every. Single. Time. Do you think that makes me not want to come back?  Hi, I'm Nicole, the most stubborn girl you've ever met. You’ve seriously underestimated me, and this is now a little game for us. Lexie just became your best customer.  Oh, and the whole kids-eat-free thing on Sunday nights was a total surprise, though it played to my side of the game quite nicely, thank you very much. Your turn!

Satisfaction from the Little Things

Posted by Nicole on October 9, 2010 at 11:26 PM Comments comments (1)

On a less-than-profound note, there are few experiences more devilishly satisfying than watching restaurant owners’ faces as they see Aiden approach the door with his dog. The panic-stricken wheels turn in their heads, following the same circle of logic at every restaurant we enter. First: “No pets allowed. I’ll need to tell them to leave the dog in the car. Get my stern face on.” Quickly followed by “Wait – that’s a service dog. But what on Earth is she doing? I think that boy can see and he’s not in a wheelchair. Am I being scammed?” Right about then practicality kicks in: “Shoot! What did I learn in elementary school about service dogs again?? They can go lots of places, but surely not a restaurant with health standards. Surely not MY restaurant!? What if the health inspector comes in and sees this? Then again, what about the ADA?”

 

They usually glance around, looking for a manager’s approval, before smiling tersely at us. If you listen closely you can hear the sound of their jaws clenching just inside those appled cheeks. They try, ever so discretely, to discern what she does from her cape, but the writing is a little small to read without really staring, and they are desperately trying to play it cool. It was especially twistedly satisfying tonight as Aiden walked through the Italian restaurant and cracked his head loudly against a chair during one of his drunken sailor “sways,” all the while trying to swipe empty (clean) wine glasses from the tables he passed.  Not exactly the clientele they're happy to see.  Andy claims it’s easier to just carry him through, and it probably is. For him. He’s getting a little big for me, though.  (Anyone have any ideas for demobilizing that free arm of his that's too far from me to control?  Heavy duty Velcro?  Or maybe a half-straight suit?  One arm holds Lexie's handle, but that other one.. Oh, that other one...)

 

The patrons are not the least bit concerned, however, and usually smile genuinely or say, “Wow, what a nice dog,” or something of the sort. I suppose that’s fair – it’s not like OSHA is going to be knocking on any of their doors if a complaint about animals in a restaurant comes in.

 

I admit it’s more than a little satisfying, partly because I know the outcome. (This was not always the case, by the way. I had my own little version of a panic-ridden drama play out in my head as we entered more than a few restaurants last year.) At the end of the meal when we get up and release Lexie from her spot under the table, the passing waiters (and usually the patrons as well) undoubtedly exclaim, “Oh my gosh, there was a dog under there the whole time? I had no idea!” or “I completely forgot about that! How well behaved she is.” And that is exactly the response you hope for, which means you’ve done your training/handling well and shown your respect for the establishment and the other customers at the same time.

 

So there you have it: One of the little things that makes me smile, albeit slightly twisted and a whole lotta' wrong. But secretly fun.  Maybe next time I should just carry a little picture like this one (from yesterday), so I can say, "THIS is what she does."  And be on my way.

 

 

Photobucket

(Love her sweet paws)

 

 

**Not all hosts/hostesses are quite this concerned. Many are indeed genuine! It seems the more “Americanized” the restaurant is, the more welcome service dogs are. Some other cultures do not share our appreciation for dogs or our understanding of how they help the disabled.

Warp Speed

Posted by Nicole on September 2, 2010 at 5:23 PM Comments comments (0)

We asked for adventure, and adventure we have received. I sort of thought it’d be one adventure at a time rather than 13 of them all at once, but I guess we’re getting our routine lesson in flexibility, amplified by about 500%.

 

In the last 3 weeks we have:

 

Started a new job in Denver (Andy)

 

Gotten the house ready and put it on the market (Nic)

 

Had a whirlwind 11 showings in 3 days (Nic, 1 grandma, 3 boys, 2 dogs, and 1 ralphing cat)

 

Sold the house

 

Put one dog to sleep (but not the ralphing cat, despite a clear and present desire to do so)

 

Traveled to New York City with an entourage (Andy, Nic, 3 boys, a service dog, 3 grandparents, and 1 aunt)

 

 

Photobucket

 

Photobucket

FYI:  When they say "0% visibility at the top of the Empire State Building," they mean it.  Alec's interpretation?  "I feel like a god!"

Mastered airplanes, airports, taxis, vans, a harbor ferry, the subway system, Amtrak, and Central Park (Lexie, the awe inspiring wonder dog)

 

Endured 3 big seizures, much to the dismay of one teenaged lifeguard (Aiden and Lexie)

 

Photobucket

Mmm.. Ice Cream.  Lexie knows he's the only one she's allowed to steal food from.  Owen performed a rhyme in Times Square for the hat, which he gave to a very, very happy Smooch.

 

Attended and presented at a Dravet syndrome Conference in Connecticut (Nic and the entourage)

 

Returned home at 8:30 pm to no power

 

Hopped back on a plane to Denver at 5:30am the next morning, still sans power and clean laundry (Andy and Nic)

 

Toured 45 houses (Nic and the realtor)

 

Submitted an offer on a new house (Nic and Andy)

 

I haven’t had time to write about all of the experiences we’ve had in the past 3 weeks, each of which would warrant their own entry had they occurred on their own. There have been tears, pride, frustration, confusion, and general mayhem. (Imagine all of us confused Minnesotans trying to get our children and luggage through Penn Station’s multi-level subway terminal in New York. Then add one dog in a pretty red cape and you get the idea.)

 

Oh: Did I mention the moving truck comes in 13 days? 13 days???

 

This journey has hit warp speed, and we’re holding on for dear life!

Aah-Ooh, Part 3

Posted by Nicole on August 13, 2010 at 10:10 PM

Here you have it, as previously promised: A Lexie update! The distinct odor of dog slobber mixed with spicy chicken treats is wafting up to my nose as I write, telling me we’ve been working hard and have news to share.

 

Let me be the first to admit that when we started this a year ago I had no idea how much “stuff” (quoting Doc Hudson from Smooch’s favorite movie, Cars) Lexie has in her. That girl amazes me with her adaptability, calm demeanor in scary public places, and patience every day. Okay, some days she annoys the hell out me. (Ann? Kathy? I’m sorry she was such a pill!) But most days she is a wonder.

 

Let me also be the first to admit that I had no idea that certain skills would become so valuable. Have you seen Aiden and Lexie out walking lately? Yes, you heard me: walking.

 

 

Photobucket

Look, Mom!  I CAN balance on one foot.. With Aah-Ooh's help!

 

Aiden walks into every building we enter these days – all the way from the non-handicapped parking space. (Unless Dad’s around, in which case a shoulder ride is definitely the preferred mode of transportation.) Before we introduced the handle on her cape, Aiden would hold my hand for about… 10 feet, then abruptly stumble in front of me and ask for “up.” If I declined, he would either sit down in the middle of the parking lot, thus necessitating the “up” even more (and just so we’re clear: a 43 lb dead lift is much simpler from thigh-level than from the pavement), or he would confusedly stand and look at me with his resigned face contemplating the long walk into the store. And then crumble into a dejected heap. He lacked the strength, endurance, muscle tone, and balance to make it across a parking lot, and having “ups” everywhere was not helping the situation. But how do you say “no” to that sweet, angelic, pathetic face staring up at you?

 

These days he’s in charge of Lexie – he holds on to his handle on her harness and walks his dog in. When he stumbles against her she braces herself and doesn’t move to let him fall. She’s at just the right height for a little support. In crowded areas I tether Aiden to Lexie and if he lets go (as he sees some shiny object in the distance… or just a fascinating rock…;), she stops as soon as she feels the tension on the tether. She waits until he comes back to her and grabs his handle, then we continue.

 

 

Photobucket

Sometimes he still gets tired :)

 

She fetches his emergency meds from the back steps when we’re out in the yard so I don’t have to leave Smooch or carry him while he’s seizing. She’s learning to “get help” when directed (by Owen and Alec for now), which involves coming and tugging on a rope I wear on my belt loop and dragging me to the desired location. Hopefully in the future (years away as she practices this skill), she’ll associate him going down with getting help and will perform this one on her own! She snuggles him during a seizure and sleeps with him at night. (Actually, she sleeps on her own cooling waterbed next to his bed at night. You can’t take all the crazy out of this girl.)

 

Photobucket

 

 

Her alerting skills have been not so hot lately, probably because he’s been having near-constant small seizures for the past couple of weeks. Yet I’m so happy with the help she’s providing in other areas that I’m not even that disappointed in the lack of alerts.

 

I saved the best for last, though. She is helping him make friends. Not real friends, of course, but kids who will talk to him or sit next to him, or at least not look at him like he’s from outer space. The other day at Owen and Alec’s swimming lessons, a little boy and his mom came in to the bleacher area. The boy and Aiden are exactly the same age and had been playing their Leapsters side by side for the past few lessons. (And seriously, what more is there to friendship than someone who’ll sit next to you in awe of the fact that you have the same Cars game, even if you have no idea how to work it?)

 

This particular day Aiden was at summer school (a story for another time, but summer school was not exactly a resounding success), so he and Lexie were not at swimming lessons. The boy and his mother walked in, and the boy came right up to me and asked, “Where’s… (here I’m expecting him to say “Aiden,”;) .. Lexie?” It turns out he was interested in Aiden’s dog the whole time. But Aiden was convinced he had a little friend at swimming, and that’s all that matters. The next day Aiden smiled as they sat together, their small feet dangling from the bleachers, Leapsters blinking away, Aah-Ooh nestled under their feet, and my heart swelled because he had a friend. After almost 5 years, he made a friend without his brothers being anywhere near him. His first, thanks to his wonder dog.

 

Lexie/Interrupted

Posted by Nicole on July 20, 2010 at 4:34 PM Comments comments (0)

There have been far too many entries lately not concerning diapers or dogs, and since we’re happily watching the months whiz by in diapers I thought I’d mention the dog’s progress for a bit.

 

Here are a few tips about assistance dogs I’ve learned in the past year:

 

1. The “minimal standard” list from Assistance Dogs International is just that: minimal. It’s posted below in case you were curious, but know that there is SO much more involved than these routine tasks or behaviors.

 

2. On the “more involved” list would be suggestions like this: Don't loop the dog’s leash around the handle to the stroller, even for a second, even if you need two hands for something. Especially an empty stroller. Moving on.

 

police lights Pictures, Images and Photos

Ugh.  That would be the rotten seizure police again.  We'll be walking along, minding our own business (like writing an entry about Lexie, for example), and then BAM they nab us.  Apparently Aiden had just had too much fun today and they felt the need to stop him and write a ticket.  I suppose this is what life's like for him:  enjoying something, and the next thing he knows it's interrupted and he wakes up somewhere else feeling like he's been hit by a Mack truck.

 

Here's that "minimal standards" list I promised for those who are curious, and then I'm signing off to snuggle.  I'll tell you about the other dog tips I've learned and Lexie's progress now that Can Do Canines are working with us some other time.

1. Public appropriateness

• Dog is clean, well-groomed and does not have an offensive odor.

• Dog does not urinate or defecate in inappropriate locations.

 

2. Behavior

• Dog does not solicit attention, visit or annoy any member of the general public.

• Dog does not disrupt the normal course of business.

• Dog does not vocalize unnecessarily, i.e. barking, growling or whining.

• Dog shows no aggression towards people or other animals.

• Dog does not solicit or steal food or other items from the general public.

 

3. Training

• Dog is specifically trained to perform 3 or more tasks to mitigate aspects of the client's disability.

• Dog works calmly and quietly on harness, leash or other tether.

• Dog is able to perform its tasks in public.

• Dog must be able to lie quietly beside the handler without blocking aisles, doorways, etc.

• Dog is trained to urinate and defecate on command.

• Dog stays within 24" of its handler at all times unless the nature of a trained task requires it to be working at a greater distance.

Quirks

Posted by Nicole on May 24, 2010 at 8:49 AM Comments comments (1)

On a lighter note, sometimes we need to stop, smell the roses, and appreciate the quirkiness that embodies Smoochie Bear. One minute he’s modeling scuba gear (You think he’s normally wobbly? Imagine him in flippers.),

 

 

 

 

And the next he’s escaping to check on Bumblebee. Who the heck is Bumblebee? you might ask. Bumblebee is a Transformer: A yellow camaro to be exact, with black racing stripes down the top and who (aside from the color “lellloooo”;) shares very little in common with a Jeep. When Andy brought that thing home, Smooch honestly believed it was Bumblebee, come from the world of animation to live in our garage, camouflaged as Andy’s yellow Jeep. He talks to him. He checks on him. If it were up to him, he’d sleep in him. This winter Andy could have picked any color his heart desired when he and his dad repainted it. Sleek black, “fun” red, even patriotic navy blue. And yet here Bumblebee sits in our garage sporting the shiniest, glossiest coat of Chevy yellow you’ve ever seen.

 

 

 

 

 

I’m not exactly sure what Fric and Frac’s plan was here, though it seems they were trying to make their escape in the 15 seconds I took to answer the phone. And they actually switched places in the time it took to get the camera – it was way more “Smooch” when Lexie was driving, the way I first saw it.

 

“Smooch, get out of the oven.” Variations of this include; dishwasher, dryer, washer, cupboard, etc. but I’ve said most of the variations to the other children when they were little, so the oven one is uniquely Aiden.

 

“Smooch, get off your brother.” This one wouldn’t be too odd except that when he tackles Skinny (the 41 lb first grader), Skinny seriously can’t get up. No matter how hard he tries. Instead he flounders on the ground, bony limbs flailing around, emitting this high pitched squeal of half panic, half enjoyment. Sometimes Owen, the 8 year old, will come to the rescue…. Sometimes not. Lexie does a better job of wrestling and playing tug of war than Skinny.

 

 

 

 

“Alec, is Aiden still breathing?” Okay, it’s a little morbid, but it counts as funny in our odd world. I mean, what exactly was I going to do if the answer was no? How much therapy are we talking here? This one was muttered last week after Aiden had a seizure and was sleeping it off on the couch. I was making dinner, and as I watched Alec put his hand on Aiden’s chest, feel it move up and down and put a finger under his nose to check for breaths, I realized most 6 and 8 year olds aren’t trained in first aid like my kids are. Neither are most dogs.

 

 

 

And lastly, the obviousness of their Hide – and – Seek game, which leaves these two giggling (or as giggly as a dog can be, tail wagging and smiling), embodies the craziness that is Smooch. You see, he actually thinks he’s hiding. And that’s why I love his eternal 2 year old mind.

 

 

Aah-Ooh Part 2

Posted by Nicole on May 7, 2010 at 9:57 AM Comments comments (2)

Talk about things I never thought I’d be doing. One thing I’ve learned through Aiden’s Journey is that I can’t predict where I’ll be or what crazy thing I’ll be doing a year from now. Did I ever think I’d consider spending two and a half hours in a doctor’s office with Smooch and a four legged service dog in training normal? Not exactly.

 

But that’s what we did today, and the fact that I enjoyed it might indicate that I have a big sign with flashing lights on my forehead that reads C-R-A-Z-Y. Let me back up. Aiden’s had a fever on and off for about a week now, which he has handled like a champ. A few big seizures, but nothing requiring sirens or even prescriptions. So with the latest spike I took him in to his pediatrician just to make sure we weren’t missing anything. (Who, by the way, resembles the mad scientist on the Simpsons. He’s this wiry older man with circular glasses and a way of wringing his hands as he recounts the history (down to the color of the lead-free-paint in our home) with EVERY single appointment.) I think he blocks off 2 hours every time he sees Aiden’s name on the list because he just can’t fathom the randomness of Dravet and needs to recount every piece of the puzzle. We adore him for this.

 

After sitting in the empty waiting room for about 20 minutes, the receptionist came over, sat down next to me, and said, “I’ve got to be honest with you. Our computers and phones are totally down. It’s going to be a while before he sees you.” (Note: When a receptionist says it’ll be “a while,” you can count on at least another hour. I think they keep their own version of time. ) At which point I calculated exactly how long Lexie had been in the car waiting, and how long she would likely continue waiting (thanks to the pediatrician’s thoroughness). I don’t usually bring her in to schools or doctors’ offices (especially ones shared by the allergy clinic, since you never know what poor allergy-ridden person you’re going to make miserable with the presence of dog hair), but sure enough: I found myself politely asking the receptionist if she minded if I brought in his service dog in training.

 

Enter Lexie. Or, more accurately, Aah-Ooh. I am thinking of officially changing her name because when people ask Aiden what his dog’s name is, it would be so darn much easier just to say, “Aah-Ooh. It’s Hawaiian.” rather than explain that her name is actually Lexie, which sounds absolutely nothing like Aah-Ooh. Sigh. Why couldn’t we have picked a simpler name? What was wrong with Max?

 

Moving on. She proceeded to lie down and play with Aiden for the entire 1 hour wait. He keeps a fanny pack of dog food around his neck, and she seems to find it mentally challenging trying to figure out which hand is going to produce the treat. He would giggle as her fuzzy warm nose snuffed out the treat, and he laid on her stomach as he lazily played with the waiting room toy. (Yes, I said, “toy.” They have one. Thank Heavens for Lexie.) They did a little of their hide and seek game (which isn’t exactly challenging on a 4 ft leash, but still entertains those two. Are you sensing they’re on the same cognition level? You didn’t hear Lexie may be slightly more advanced from me…;) Get this: I read a book. An hour wait at the doctor’s office usually sends me to that place where I see little wine glasses dancing around on the pleather chairs, but today it actually counted as “down time.”

 

In the room, she was calm, content, and polite, though the two’s interest in each other had waned ever so slightly by then. It’s funny: people bend down and talk to Aiden when she’s around. They get down to his level and ask him about his dog, then ask his permission to pet her. He seems to feel powerful and appreciated as he grants or denies permission, and the questions they ask are things he can answer. Rather than hearing, “Wow, I like your shirt – what color is that?” for the billionth time and being flustered or ashamed because he doesn’t know the answer, he hears, “What a nice dog you have. What’s her name?” To which he replies, of course, “Aah-Ooh.” With confidence.  And no one ever tells him he's wrong like they do with the other questions, saying, "No, it's not blue, silly - It's green.

 

So despite the fact that she did not alert in any way, shape, or form to the last seizure, and I had to call her to lie with him for the latest one, she is actually becoming an assistance dog. In all the things I imagined doing with my life – finding cures for diseases, researching and developing new chemical products, getting my Ph.D, and other ridiculously lofty ideas I had – I never thought I’d be training a service dog. But Aiden is our leader on this journey, and we’re all along to make sure he enjoys the ride.

Hold that Thought

Posted by Nicole on April 23, 2010 at 11:54 PM Comments comments (0)

There are so many good things to report this week! I won’t even try to be witty or articulate – too much to share, too little time…

 

First of all, a big fat “You’re right, I’m wrong, You’re smart, I’m dumb” goes out to my dear husband. After writing about my relief at putting Aiden back in diapers, I just couldn’t help but give him one more shot the next day. And… he’s doing well! A few incidents here and there, but well overall. (See? If I say “incidents” instead of “accidents” you can even pretend this isn’t yet another blog about diapers. Because who really wants to read all I have to say in that department?) My wallet is much thinner for all of the bribes – er – positive reinforcements we’ve given him, but I am not above bribery. Okay, maybe I used to be. But this kid knocks me off my high horse too often to even pretend I can ride it anymore.

 

Second, - Actually, I have to stay on that first one for a minute longer because it is a big one, 4 ½ years in the making. I’m very proud of him, very impressed with Andy’s intuition, and so much more relaxed this time around. I don’t even feel like I’ll be disappointed if he needs to return to diapers in the future. And if I ever need to see a therapist (which I am definitely not ruling out at this point), I can refer back to that statement to show her how sane I am. Or how sane I can be.

 

Now, second of all, we got a notice from Can Do Canines that they are going to make an exception to pretty much all of their rules and evaluate Lexie and Aiden for their program! A. They don’t provide seizure response dogs to children under 18. B. They don’t accept owner-trained dogs into their Autism Assist program. But I appealed to the kind-hearted trainer one last time after Lexie’s recent success in the response/possible alert department, and she has agreed to take another look at it.

 

 

When his brothers are at school, she's all he's got.

 

So training is back on, Lexie is thrilled she is going everywhere again, Aiden is way more with it and helpful this time, and things are going well in that department. We got our first letter of recommendation from the trainer tonight, and she made my evening when she said, “If it doesn’t work out, it won’t be because of Lexie’s personality, temperament, or obedience.” Anyone who’s come to our front door and had our beast of a dog greet them can appreciate how much this endorsement means! She still needs to actually pass their strict evaluation protocol and may never end up in the program, but at least I can finally say I gave it my best.

 

Third, Aiden has had a few fantastic days in a row. Don’t know why, don’t particularly care why, just grateful for what it is. Good night!

 

He had the stamina to follow Dad around

 the ENTIRE time tonight - he doesn't usually make it that far!

One door closes...

Posted by Nicole on April 11, 2010 at 10:44 PM Comments comments (0)

When one door is closed, another is always opened. The size of the doors seems to vary, though. Sometimes a large door slams in our face and the small mouse-sized door that opens offers so little consolation it feels like a joke gone wrong. Then again, sometimes it’s a small door that closes so a mammoth carriage-house size door made of rich mahogany can open.

 

I’ve gotten used to seizures, for the most part. Very few really scare me anymore, especially since he hasn’t been needing an ambulance or the hospital to stop them lately. He’s been breathing fairly well through them, we’ve been able to stop them, and he hasn’t turned a scary shade of blue in quite a while. But I was scared when, last week, I looked up to see his arms fly over his head, his back arch, and his head jerk violently backward at the start of a big seizure. Oh, and he was on his bike about 10 feet in front of me.

 

Let me rewind. He had been a little off all week. His atypical absence and myoclonics were up, and the zoniness of last fall (pre-Stiripentol) was back for some unknown reason. I prayed he would snap out of it and would be able to enjoy the little family get-away we had planned at the waterpark for spring break. But God didn’t seem to be listening, and he just got worse.

 

After spending the entire sunny, warm, beautiful day indoors with all three of them because Aiden was “off” (did I mention it was spring break)? I thought a quick bike ride before bed would be okay. He did great! He chased his brothers, smiled throughout, and needed minimal pushes up the driveway at the end. So I thought we were home-free and let my guard down a bit, letting him go on ahead of me into the garage.

 

But it was that moment when Lexie (who was on her leash at my side) lurched forward, taking me by complete surprise, and let out a little whimper type sound. My eyes instantly moved from her to where she was headed, and that’s when I saw Aiden arching with arms over his head off the back of his bike. Onto the concrete floor of our garage, head first. You know how in dreams you try to run toward or away from something but your legs seem to be filled with lead, and all you can do is watch as the event unfolds in slow-motion before you? That’s what it felt like.

 

Lexie was on him, licking his face as he convulsed violently on the ground, then laid down beside him as the convulsing slowed down. (Okay, if I’m totally honest, she laid down on his head. As in, RIGHT on his head. We may need to work on that a bit. But she kept her post until I brought him inside.)

 

Such a sad little boy, such a good girl

 

 

I was shaken up and felt pretty sorry for all of us. Why do these things have to happen to him, and what were we thinking planning to take him to a waterpark the next day? It looked like I was destined to spend the entire afternoon in the hotel room watching movies with him while his brothers and Andy had fun playing. But gosh darn it, we were going as a family, and we weren't leaving Smooch behind.

 

It turns out God was listening, and just had His own way of answering my prayer. Just when things seemed hopeless, He woke that child up the next morning and wiped away every trace of seizure activity.  It’s like the electrical activity just builds and builds and builds, and after it’s released he has some reprieve. I had completely forgotten this from last summer! That small door (what’s one seizure, in the big scheme of things?) that slammed in our face on Wednesday night in the garage allowed another, grander door to open for us the next day. 

 

  

 

 

We had a great time on our vacation, even if it was shorter than 24 hours. We were normal. We did a normal family thing. And it was truly Heavenly. We are so blessed!

 

 

Aah-Ooh

Posted by Nicole on February 25, 2010 at 5:45 PM Comments comments (0)

Watch out – This is a long one! Luckily, there are some cute pictures to break up the story :)

 

Aah-Ooh

 

This is “Aah-Ooh.” Huh? “Aah-Ooh.” Not entirely grasping it? Neither were we… for about a year and a half. When Aiden was almost 2 and the doctors were still telling us he’d outgrow his seizures and be fine, our beloved golden retriever, Callie, died. She was our first baby – As newlyweds, we traveled 2 hours west to get her and chose as our first “child” this beautiful little puppy with a furry ridge down her nose and affectionate kisses. She returned the favor by peeing on our laps the whole way home. She proceeded to “finger paint” her kennel each and every day we went to work, which was charming. We both remember thinking, “Maybe if I stop for gas he (she)’ll get home before me and have to clean it up…” Despite her disgusting habits and odd way of showing her love, she wormed her way into our hearts and will always be our first baby.

 

About 9 months later, when I was pregnant with Owen, we picked up Jackson, a yellow lab dying of heartworm and malnutrition, running with a pack of dogs at the lake. We took him home, gingerly nursed him back to health, and discovered he loved my pregnancy naps on the porch swing in the sunshine almost as much as I did. So Andy had Callie, and I had Jack – a perfect foursome.

 

When Callie passed away from cancer, Andy mourned and I looked for a solution. What was the obvious answer? A Christmas puppy, of course! Hasn’t every child and dog lover dreamed of getting a puppy for Christmas? The only thing that can top it is a horse, and that wasn’t going to happen again anytime soon…

 

Aiden was my partner in crime. It was sweetly innocent that he couldn’t tell anyone about our excursions. If only I’d known then what I know now. That he can still keep a secret better than anyone else. We traveled down to a farm an hour away to meet and visit this sweet little puppy, making the trip while Owen was in half-day kindergarten and Alec was at preschool. We had exactly 2 hours and 10 minutes, and we made it back to pick up Alec every time. I employed both extended families to help retrieve and harbor the fugitive until it was time.

 

Even as a puppy she was always at the center of the boys' play

 

On Christmas Eve, Andy was surprised with his very own new puppy to love complete with a big red bow, and he didn’t need to feel guilty about replacing Callie because he didn’t go buy her – she was given to him. A few weeks after we named her Lexie, it morphed to “Lexie-Lou,” but only every once in a while: For the most part, we called her Lexie. So imagine our confusion when, for the next year and a half, Aiden said, “Aah-ooh” as if he were saying the clearest thing in the world. We had absolutely no idea what he was talking about. This happens frequently. (Again, “Dad’s Take” has some stories on this.)

 

 

Always at the center!

 

Fast forward almost 2 years: Last summer I set about trying to make this rambunctious, ill-mannered creature into something useful, and embarked on an adventure to train her to be Aiden’s seizure response/autism assist dog. At that point she resembled Marley (from Marley and Me) more than Lassie, but it was worth a shot. Ideally, she’d be able to support him as he stumbles..er…walks, keep him grounded and “safe,” avoiding the seizures that come when he is scared or overwhelmed, and help him have confidence to make it through a school day. She may be able to lie on him after a seizure to comfort him, carry his rescue medicine, etc. If she could alert us to his big seizures, that would be a bonus (especially at night or at school), but certainly not something we can train outright.

 

 

 

Though many facilities train seizure dogs to respond to and/or alert to people’s seizures, only one facility in the US will work with children, and they require $12,000 in fundraising before they will place a dog. With two dogs already at home and no desire to fundraise $12,000 for yet another dog who might or might not be able to help Aiden, I decided I’d see if Lexie could do the job. Am I crazy? Definitely. But God must have placed Aiden with me for a reason, and my job is to explore what that reason may be, even if searching down crazy roads makes me look like an idiot. If she could pass two levels of basic obedience and assist in one daily task (like fetching Aiden’s rescue meds when he has a seizure at home or wearing them in her vest while out and about), the local autism assist program would consider her for their program.

 

She did wonderfully on the obedience part! She learned to heel perfectly on a gentle leader, could sit, wait for minutes at a time, stay, lie down, stand, and fetch on command, even in public places. She actually behaves better at Target and at the mall than at home or in our neighborhood – go figure. She never sought out treats or affection from strangers in public, and could even make it past the raw meat section of the grocery store without so much as a sniff in the wrong direction.

 

While out and about everyone stopped to comment on what a well behaved, beautiful dog we had. She kept Aiden occupied at the grocery store while I bagged groceries as he held her leash and reminded her to “wait.” I started to teach her to stay by Aiden during his seizures and tried to transfer her affection from me to Smooch. She never did master greetings at our door, though, so most people who’ve met her think I’m absolutely insane for thinking she could be a service dog.

 

Learning to lie down with him after a seizure

 

It was therapeutic for me to have one thing go as planned and be in control of some situation, even if it was only a dog. She was making amazing progress, and we were set to start level 2 (though she’d already passed the ADA list of tests service dogs needed to pass). Sadly, the local agency decided during this time they’d no longer accept owner-trained dogs, so if I wanted to continue down the path, I was on my own. It was about the same time that Aiden’s health took a nosedive, and I was faced with a choice: 1. Continue to sink time into training a dog that is not guaranteed to be able to help Aiden (and about whom Smooch showed little concern at the time), or 2. Devote my time to helping him get healthier and get the meds he needed from France. I chose option 2.

 

And she's so tolerant of Smooch -

Aside from his brothers, she's the only real friend he has!

 

 

Maybe if he becomes more stable and I can convince a facility to work with Lexie I’ll pick it up again, but I’m pretty exhausted with all of the other ghosts we’re chasing right now. I still love her and every time she looks at me I sense she has this untapped gift and wants to help mother him. As Smooch becomes less and less stable and more and more affectionate toward her, I think more about her usefulness as a mobility assist dog if nothing else and am saddened to think I’m the one standing in our way. She has the most tender heart, and loves all of us, wanting to help. Maybe someday we’ll be able to give her the attention and help she deserves. Until then, that’s the story of Aah-Ooh, our very own Marley.

 

One of the walks Dad mentioned. 

Just a pet for now, but we love her anyway.