happy being trevy

    I caught him…     bummin’ surf therapy off random strangers!     …danielle

    As a result of Trevor's brain surgery, he lost vision in the right peripheral field of both eyes.  It’s called Hemianopsia and Wiki can tell you all about it .     He navigates so well that it's what I call a "hidden or sneaky disability".       Until he runs smack into a pole at summer camp and gets a ginormous goose egg over his right eye!   Poor baby, his aide said he hardly cried at the time or on the way home.  The accident happened right before go home time.  I guess he saved all his tears up for me.  Because the minute he opened the door he just melted into a sobbing puddle. He was exhausted and I'm sure, frustrated.   It's not fair when things that you DON’T EVEN SEE smack you in the noggin'!   But the good news is…he received a 4 week partial camp scholarship this summer.  That means he’ll have plenty of time to learn his way AROUND all the poles!   …danielle

    I never thought that would happen.     That I’d miss it.     That it would roll right by without melancholy mommy feelings and tears and the whole tide of emotions that typically washes over me when a day like that passes.     But here it is.  October 18th.     And October 9th…the day they took half my child’s brain to rescue him from the Seizure Monster…a day I never thought I’d forget…passed right by and I didn’t even give it a nod.  It slipped right by without me noticing.      I probably wouldn’t have at all had Jonathan not mentioned it to me.  And when he did, I was truly astounded.  Then I started to wonder what exactly that means?  Because it feels weird knowing that I forgot.  It feels wrong somehow.  Like I should wear black today instead.  And try to conjure up all those emotions I usually battle through this month.  But maybe it’s a good sign?...

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...

    A thunder storm was rolling in just as Trevy was waking from his nap.  He had this to say about it…     Mommy!     I responded with, mmmm hmmmm     He continued with,     Scary…ummmm ummmm     (he stutters ummmm ummmm often while his little brain tries to find the right words)     Thunder…ummmm ummmmm     BOOOOOOM!     I know I’m mommy n’ stuff.  But that was wicked cute!     …danielle

    The first Friday in June has been a favorite of our family’s since…     Well…     since we were first invited to Hasbro Children’s Hospital’s Dream Night at the (Roger Williams) Zoo.  Shortly after Trevy’s diagnosis.  Four years have gone by too fast!       You can read the history of Dream Night here .     For our family, it’s just such a beautiful treat.  An escape from the daily grind that is loving and caring for a child with catastrophic epilepsy.  While some stretches are less crisis filled than others…somehow it’s no less exhausting.     Or maybe I’m just a big baby?        Either way being invited to celebrate at the zoo with other families, exhausted (or big babies?) like us, is…     Well…     heart warming.     All three kids begged for face painting this year.  Evidently, Tobes has lived the past t...

Trevy is in the process of being evaluated for Home Based ABA.  While I can’t (or is it won’t try to ) really give you the scientific breakdown of Applied Behavioral Analysis , I can tell you that this therapy is working wonders for Trevy!  Every letter, shape, number, self care ability and even some of his communication gains can be traced back to his school based ABA program.  His school based ABA is focused on academics.  Home based will be focused on life skills.  But I don’t want this post to get muddled down with too much text (somehow I’m thinking that’ll be a fail ) because that wasn’t even my point.  Nor is my point trying to steer anyone else towards ABA.  It’s not the right choice for every child.  But it is for Trevy.  It’s part of his story.  A positive part.  I cling to the happy things.  So I give ABA a shout out every now and then on my blog even when it may not be the point of my story. My point is ...

    Last Friday was our bi-annual schelp to Boston Children’s.     Dr. Neuro lives there.     And she’s kinda insistent we see her every now and then.     I’m such a big baby about it.  Seriously, though.  It’s a haul…and while I love Dr. Neuro and am thoroughly convinced she’s the right choice for us – it still stink stink stinks that we have to make that commute.  Even if it is only twice a year.      The thing I love most about Dr. Neuro (other than her involvement in helping us get Trevy’s surgery approved) is that she listens and trusts me.  If I tell her a little twitch is a seizure…she doesn’t second guess me.  And I’ve been second guessed by neuros before.  But she gives me the benefit (of having seen hundreds of thousands of seizures) of the doubt.      She did however look at me like I had two heads when I told her I’ve thought about just weaning him off of all ...

I t his speech development chart by Wee Talk Speech & Language Services of Reading, PA . It’s simple format is perfect for me!  Too much info just makes my brain turn to mush.  Which is why as often as possible I avoid shopping at ginormous stores.  But this…this amazing chart…is just super!  LOVE it! In case you’re curious…Trevy is solidly in the 2 to 3 years bracket (he’ll be 5 in April!) .  And maybe…just maybe…beginning to emerge into the 3 to 4 years box.  Depending on the day.  …danielle

  I had to advocate hard (read: get an attorney involved) for Trevor to receive ABA therapy through school.  In our state, ABA therapy is primarily a Medicaid approved home-based program.  Which is great.  If you have Medicaid.  And also, if your child’s primary needs are self care or behavioral.  Which Trevor has as well because by God I want the boy to dress himself eventually!    However, I passionately believe that the ABA model is what he needs to receive and retain academics.  Almost more important (to me) than dressing himself.     With the help of RI Disability Law Center, the school agreed.     Trevor has been receiving 8 hours of ABA instruction as part of his Individualized Education Plan for a little over a year now.  He goes to school about an hour and a half before his friends.  And the remaining half an hour is in class to help with generalization (layman’s terms:  being able to use the...

    January Trevy Trays VIEW SLIDE SHOW DOWNLOAD ALL         I try (don’t miss the key word: try )  to spend 30 minutes daily working with Trevy.  Using the Montessori inspired trays has become the easiest w...

  I caught Trevy rockin’ out with one of his fave Christmas gifts.  Please pardon my messy Therapy/School Room.  That’s what happens when it gets used.      :: smile ::        I love how he pats his chest when he sings “me”.   Also, how he turns his head away so he can keep chomping on the microphone.  Cheeky.  But smarty too.   I do think it’s super cool that Allison Cruz thinks he’s cute.  She doesn’t just have a smashing voice…but super good taste too.      …danielle

    **warning – content may be offensive to Tebow haters** **double warning – this post has absolutely nothing whatsoever to do with catastrophic epilepsy. Unless of course, you count all the “Tebowing” we’ve done over Trevy.  All our kids actually . Or the fact that Trevy looks stinkin’ cute in the prayer warrior pose **         My men-folk love sports.  Even Trevy.  In fact, he’s been wearing his Special Olympics medal around the house lately.  Maybe hinting that he’s ready for our Winter Season to get on with it already!  Bristel’s the only hold out.  In fact, she told me the other day that she’s going to marry for love.  Because if he loves her…he won’t watch sports.  lol  I didn’t have the heart to tell her…if she loves him…she’ll learn to enjoy them.        Toby is an all around athlete.  He’s not a super star at any one sport…but solid in all of them.  He h...