happy being trevy

Have you ever heard that saying… In every jest there’s an element of truth? I’ve teased for years that if Trevy ever came off his seizure meds he’d be off the hook with energy and mischief. It was a joke.  Kinda. Sorta. The reality is…Trevy is a handful to manage ON three seizure medications.  Medications which can and do inhibit energy and creativity.  It didn’t require much imagination to visualize what would happen if we ever deleted a pill or two.  My mental image is Donnie from The Wild Thornberry’s.  On steroids.   I had no doubt there would potentially be a trade off. Cognition for him. More work for me! Even knowing that, we decided to slow wean one of his meds.  Topomax. The effects of this wean have been nothing short of AH-mazing!  In both good and not so good ways. Trevor’s speech has positively exploded.  Like, suddenly structuring sentences i...

    and when something makes me LOL – I just have to share it       …danielle

    Trevy to Uncle Byron : Dih-Doh (Bristel) hit me   Uncle Byron : Bristel hit you?   Trevy : YEEEEEESH!   Bristel : Oh Trevor, stop taking all the credit! You hit me too!     **********   I really should stop ignoring them so much.  On the way home from the wading pool Trevy was hollering in the back seat and I tuning him out.     According to Bristel he was hollering…     I nakey!     And sure enough, that’s how I found him.  He was already shirtless but somehow stripped off his bottoms with his seatbelt on and was beaming in all his birthday suit glory when we finally stopped.     **********     Toby finds me in the kitchen and says with a sigh…     I’m glad I found you, Mom.  I need to talk to you.     Around a mouthful I ask ‘bout what.     Life     He says.  With another melancholic sigh....

    Whenever Uncle B comes to town we pose for a new family photo.     He has a groovy camera and is a photo snapping fool.     Seriously.     I just uploaded 616 pictures, including one of our dog squatting!  LOL     I must confess, I was hoping to skip the family photo shoot tradition this year.     I just wasn’t feelin’ it.     This is where I confess it’s mostly because I can’t stand how chubby I am.  Ugh.     But Grams played the “I’m sick” card and twisted my arm until I cried “CHEESE”!     And now that I see how cute they are.  Well…I’m glad we kept the tradition!     …danielle     **disclaimer – It was not all giggles and gumdrops for this photo shoot.  In fact, we all wanted to throttle each other while we waited a good 15 minutes for Uncle B’s lens to de-fog (it is stinking SOUPY here!).  Heat makes us cranky...

I wish I could say now that he’s older it’s easier. But then I’d be lying. Oh sure, he was all smiles when he got his “power ranger” wristband.  He was even smiley while we waited almost four hours for a room to open.  He smiled when he saw the nifty, new, touch interface tv in our EEG room too. But when the EEG girls arrived to get him wired up…everything went to pot.  By the way, these girls have been EEG-ing him since he was an itty bitty baby.  Miss. L was with us for that very first EEG.  When I fell to pieces after the neuro came and told us we needed to meet with him immediately.  I may not have known everything…being yet a special needs novice…but I knew enough to know that the chief of anything doesn’t make time for you unless it’s serious.  Miss. L tried to comfort me while my heart shattered in a millions little pieces around me.  I bet some fragments are still there.  Hiding in a corner, in that hole in the ...

    I’ve been up since 5:30.  Stress wakes me early and plots against my giving up one cuppa coffee a day plans.     I’ve been stewing at myself too.  I meant to create an EEG social story for Trevy.  Then I found one already created online and meant to read it with him.  I meant to use a doll and Wiki Stix to give him an interactive of what’s happening.  Because I doubt he remembers.  It’s been over a year ago since his last.  And I’m so mad at myself for letting the days slip by until here we are.     I’m also second guessing our decision to go in-patient rather than home with the EEG.  We’ve done the take home before though.  It was a horror.     He’s happily running around behind me blowing into Bristel’s recorder.  Which he’s forbidden to use when she’s here.     And I’m posting.  Wasting the last ten minutes before I take a big breath…to mark our voyage.  ...

    I'm trying to ignore that appointment in my day timer for next Monday.     The one for Trevy's 48 hour in-patient (boo) EEG.     Because it means we'll be imprisoned in a teensie weensie hospital room until our captors (I totally call them worse behind their backs) decide to release us.     Ugh.     I'm trying to ignore that it's less than a week away now but every time I open up my stinking planner – there it is.     Glaring at me.     I’ve been trying to distract myself.  Playdates and Pinterest only work for so long though.     I’ve been giving myself zero wiggle room for rescheduling.  Hence, his “peacock” this week.  I’m too much of a tight wad to pay for a haircut only to cancel the point of the haircut.     I’ve been telling myself that we’re lucky.  Count your blessings and stuff.  Lucky that Grams and PopPop can keep the big kids for ...