The Wires Come Off

It'd be great to get to writing without distraction since it is 9:30pm.  But my willful child has decided to meander out here, her face all screwed up trying to think hard of an excuse as to why she needs to be out of bed.  This is a normal occurrence here in this house.  Now I can't say for sure but it seems that even though her first big ticket seizure happened with me next to her in the bed, lately it seems like she is not having them if she is next to me.  Some mornings if I hear her stirring before the Seizure Witching Hour, I'll ask her to come lie down with me.  She's been fine with that set up. 


But now that I've said it out loud, I've probably inadvertently petitioned the universe to test the theory.


And naturally, since she was all hooked up with her 24 hour EEG all night, there wasn't a seizure to be found.  They are in fear of recordings...similar to how Native Americans believed the soul would be captured in a photograph.  


On the way down, the Humanling insisted on doing the usual music bargaining - making sure to start before we even backed up to leave the driveway.  Miranda Cosgrove.  Seeing that I have heard these songs over and over again, I counter offered - ONE song.  And it can't be dreary.  


She got one song.  And it WAS dreary.  I cringed and then noticed that my left foot was tapping the floor to the dreariness of the beat.


She also mentioned to me what her costume is going to be for Halloween this year - a female prisoner.  Because that's the theme in the Lady Gaga "Telephone" video.  Great.  How about a giant padlock instead to keep you in your room on Halloween?  


We were late getting out the door to have the wires removed and the woman removing them was almost fully direct in verbally spanking us.  Almost.  She more or less complained loudly, letting us know that this could really alter the orbits of the universe.  


Seven minutes later we were outta there!  


So she had a two day hall pass from school.  And spent a lot of time today making up for not being on the laptop yesterday.  


We played more Junior Monopoly tonight and ended up in a deadlock.  I played Eddie Rabbitt's "I love a Rainy Night" for her and she seemed to like it.  So I upped the ante to "Footloose" by Kenny Loggins.  I don't know how the two are related but in my head it's a natural progression.


For now she's gotten her way (sort of).  She is laying down on my bed under the condition that if she was not sleeping within 10 minutes of her head touching the pillow, she is sent back to her bed, no questions and no bargaining.  It worked.  

Pull up with some Banana Bread for the Backstory

I will be super surprised if I can get through three sentences before this kid gets out of bed, finding that she is one hug devoid of going to sleep comfortably.  My Humanling is thirteen and tonight is attempting to sleep with the equivalent of five packages of Twizzlers, all glued together, attached to her head.  Today is the 24 hour EEG that she has done yearly.  It looks terribly uncomfortable to try and sleep with.  

This is the first year that she seems super self-conscious on the drive home.  In her mind, Justin Bieber was in every passing car, guffawing at the wrappings around her head that hold the wires securely.  I swore that I took back roads.  But somehow, Justin knows such roads in my small town.

Humanling's seizures started out early on, maybe when she was four years old.  Only back then I thought we had the cereal prize equivalent of seizures....they were petit mals.  Not too bad, definitely not enough to scare me.  Probably one of the only ways we figured out that she needed a neurologist was because she would drop sentences and then wouldn't go back to pick up where she left off.  As if it never existed. We also joked that she was a vampire since the sun seemed to bother her.  So she was put on Zarontin.  For years.  Eventually, Lamictal (Lamotrigine) was added.  

We went on like this for years.  I read forums, and played with diet.  Humanling is already a lifelong vegetarian.  Could I have brought this on with diet?  The neurologist emphatically states no, although I do believe diet can have a say in things.  So we checked for sensitivies....gluten, dairy, peanut, the works.  We both tested positive for gluten and dairy, so I tried a whole alchemy of foods to substitute.  She would have raw goat milk mixed with heavy cream and the most simple chocolate syrup for flavor that I could find.  She ended up being a social pariah in school when it came to lunches or parties.  

Being a single parent, she would sleep with me often.  One morning on a weekend when she was about nine, I woke up to her in a full blown convulsive seizure.  She had hit her head earlier in the week hard enough to warrant a doctor's visit.  They said she was fine.  Most people have a tiny freak out inside when they see their first seizure.  Especially if it is your child.  

And thus was born a brand new fear.  Now they weren't benign, cute little petit mal seizures (which of course come with their own damage) but now who knew when the next one would strike.  I couldn't sleep for weeks.  

Eventually though, as with many diagnoses, we get used to it and learn to live with it as best as we can.

As it turns out, Humanling has seizures that creep up on her as she is waking up.  This could be from a nap, from something suddenly waking her up in the middle of the night - such as noise or most usual, in the form of showing up in what I've dubbed her Witching Hour...between 5 and 6:30am.  

They also occur in car rides if the sun is flickering through the trees as we pass.  But these are, so far, the only two conditions in which to induce a seizure.

So there are baby shades in the car on the windows and she wears sunglasses and a brimmed hat.  Hahahah....yeah, ok.  That's what she's supposed to do.  That's why the baby shades are there now....for the frequent forgetting of her hat and glasses.  

So still, I am lucky for now in the sense that they are predictable.  For now.  

So what do we do for a day where she can't use a cordless phone, cell or get near a wireless laptop?  

She popped open a San Pelligreno, kicked back in a chair and played her DSi for a bit.  

Then there was the fine art of Die Balancing:

Then we moved on to creating a banana/blueberry bread that I've mean meaning to try.  She stirs, I measure.   She licks the spoon.

And voila....this the the BEST smelling banana bread I have ever known.  Too bad we were both too full from dinner to try it just yet.  But I can vouch for the scent!

Now that I look at it again though, I think I'll slither into the other room and give it a taste!  

Tomorrow morning she has the wires and bandages removed.  Then it will be a long, hot, glue melting shower for her.  And another freebie from school.  

Now she sleeps in the other room as Coyote Oldman plays on her CD player.  I usually throw something in at night to block all other noise if possible.  I'm going to go try that bread now!