Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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Responsibilites, shmesponsibilities

Posted by Nicole on June 3, 2011 at 10:44 PM

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.

Categories: April-June 2011

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1 Comment

Reply Niki
3:59 PM on June 4, 2011 
Amen! It seems like things are pretty similar around here. No cleaning, no cooking, etc. Cole IS having more GTCs than ever, but hey...he's happier, more talkative and we are actually going out of the house more than once in a blue moon! Responsibilty...who needs it?!