happy being trevy

  Trevy’s vocab just continues to blossom.  Much of what he says is still unintelligible to the non-Trevy trained ear.  But it’s coming along.  Among his newest words is - bad .    I’ve used it tons while we’ve been iPad surfing YouTube.  Cause.  Well.  You just can’t believe the crap out there!  I mean seriously?  Who comes up with Dora killing Elmo?  Why, people?!  So I’ll say, “No watch, Trevy…it’s bad!”  Or something to that effect.       Somewhere along the way his little mind wrapped around the meaning.  Suddenly he was self filtering the baaaaaaad   (he has this super cute way of dragging a word out) Barney videos without mommy prompting.  He even makes judgment calls on the goodness or badness of a video based on the very first image.  It’s so funny and interesting that he gets it.  Of course he also uses it to his advantage by labeling baaaaaaaad anythin...

      AutismXpress – FREE OMGoodness emotions have never been SO cute!  Adorable little faces representing 16 different emotions from happy to hiccupy complete with sound effects.  Trevy’s faves are “gassy” and “sneezy”.      ilearn with Poko: Seasons – FREE Tanzanian memories!  I think this show might be South African based?  I just remember it was one of the few children’s programs we had access to in The Bush.  And now there’s an adorable iPad app so Trevy can walk down memory lane!  Explores weather conditions, what to wear and activities.  We haven’t played this one yet…but it looks fun!  FYI – I couldn’t find the free version to link in but all you have to do is visit the app store and search for ilearn with Poko and it will pull up for you.        Handmade Mother Goose – FREE Just for funsies app.  Brings snippets of mother goose poems to life.  It’s not super exciti...

  exhibit A.      Just in case you were wondering.  Yes .  Even with my clutter phobia, my house looks just like yours.   This is what fell out of the back of my couch when we were hunting for the lost remote.    Slim Jim wrappers.  Half munched cookies.  Cheerios by the bowl full. And more.    …danielle

  For the life of us we couldn’t figure out what he was trying to say.   A few months ago he wouldn’t have cared.   But that was a few months ago.  Now, he demands understanding or else.  He’ll either fuss at you.  Or repeat the (usually unintelligible) word until you want to pull your hair out!  Development is good.  But that doesn’t mean it’s not annoying!   :: wink ::   Anyway…   He kept saying this word.  It sounded like “shoe” or “chew” or something along those lines.  So Grams and I kept trying to figure it out.      You want your shoes?   You need a chewie?   And so on.    Until he paused.  Took a deep breath.  And sneezed like the dickens!    We looked at each other over his wavy head, laughed and at the same time said…   A-CHOO!    Just another funny-cute moment brought to you by Trevy…   …danielle

    The other day I posted our over-flowing med drama.  And how it’s driving me positively bonkers.    I was pleasantly surprised with the comment dialogue.  Even the dads were chiming in!  Very cute, guys.    :: wink ::   My sweet friend, Mrs. M , posted a picture of her super cute retro bread box (aka. medicine cabinet).  Take a peek here .    Elaine found the most adorable little cabinet.      Don’t you just wanna pinch its cheeks?!  Click the picture for more deets.    I thought these baskets from IKEA were cute too.  Click the picture to visit IKEA online.  You can hang them from bars (which are sold separately) and make it kinda like wall art.  We already have that theme going with our pots and pans on the wall.  I should take a pic for you guys cause it’s a nice look.  (I’m trying to abstain from saying cute again :)      ...

  Just look at all those meds.   ALL those stinkin’  meds…     Trevy is currently on a cocktail trio of Anti Seizure Drugs…   Trileptal Topomax Dilantin   He takes each at varying doses twice daily.  Once with breakfast.  Once after bath.    He’s on Miralax for the… ummmm …poopy issues that are oh so common for children with low muscle tone and toxin cocktails with side effects which can contribute to low muscle tone and poopy issues in general.  I’m trying to figure out the right dose for him.  Seems like it’s either too loosey goosey (TMI…I know) or too const-y (do I really have to S.P.E.L.L. it out?).  And yes …we’ve tried Activia.  FiberOne bars too.  I figured I’d go ahead and answer that now.    :: smile ::   He’s on a multi-vitamin.  Cause, you know, it’s important to keep him healthy- ish .  I just bought the huge generic chewy ones from BJs.    ...

  How lucky am I that my best friend also happens to be the daddy to my (unless they’re cheeky…then they’re HIS) children?   Happy Father’s Day, Babe…   …danielle

  You find the humor in your child’s 1st girlfriend being the ESL (english as a second language) classmate!    I think she’s from India.  Props to Trevy for choosing exotic beauty and brains (most of Trevy’s specialists are of Indian decent)!    :: wink ::    …danielle

    If she’d have caught mono way back in November.  You know.  When Trevy had it too.  Two birds one stone thing.      But noooooo…   Thankfully we’re over the  hump now!  Although she’s one cranky sick-y.  In fact, Jonathan turned to me the other day and said…   We gotta marry this girl off as soon as she’s legal!   …danielle

  Hot off the FDA release grill (and still steaming in my inbox where it arrived from a dear friend ) is this interesting (if not phenominal) news.    “The U.S. Food and Drug Administration today cleared the Siemens Biograph mMR system, the first device to simultaneously perform a positron emission tomography scan, commonly known as PET scan, and a magnetic resonance imaging (MRI) scan. PET scans allow physicians to see how the organs and tissues inside the body are actually functioning by injecting a radioactive chemical tracer into the patient’s bloodstream. MRI uses magnetic fields and radiowaves to produce detailed images of organs, soft tissues, bone and other internal body structures. Previously, physicians could use a PET and computer tomography (CT) scanner to image the body. Advantages of the Siemens Biograph mMR system over current systems include simultaneous imaging, reduced radiation dose, and increased soft tissue contrast. "The Siemens PET/MRI system...

  I was putting Trevy to bed for his nap.  He was stalling.  Asking me in one word or less about various things and people.  Silly deserves silly.  So I responded by bouncing him on my knee with each syllable.    Pop   bounce   Pop   bounce   at   bounce   work   And so one we went through at least four people.  I told him everyone was at work even though the truth is…I haven’t a clue where a few of them are!  Trevy with a twinkle in his eye proceeded to imitate me.    Dih-Dough (Bristel)   he bounced himself   tares (downstairs)   bounced again   tryin’ (crying)    And indeed she was!  I probably shouldn’t have laughed (or at least not so hard) cause really…she’s sick as a dog.  Poor baby.  But the whole scenerio was just too funny-cute not to.  I made up for it though by telling him silly was all done and it was...

    I’ve been cheating on you.  Only because I really want this space to be focused on Trevy and what it means to love a child with a catastrophic epilepsy diagnosis.  But I’m a mommy of more than one, you know.  So I’ve been keeping a whole-family blog elsewhere.  A place where I can let my homeschool mommy hair down.  And think about things other than seizures and brains and drugs.  Sometimes the content overlaps the purpose of both.  Like the post below…   *********   As this school year is nearing an end…   And I’ve started prepping for the next.  Rabbit Trail alert:  Have I mentioned that I still can’t believe I’ll have two at home next year?!  This from a girl who swore she’d never homeschool her kids.  Isn’t He funny?  Lately, I’ve found myself dwelling and mulling over my desire for them.  The purpose of our choice to educate them at home.  Academics are important.  And ...

  Sometimes it can get to be too much.  Life, I mean.    At least for me.    And recently I have just felt swallowed whole by it all.  Grams keeps cheering that my (typically disgustingly) spic n’ span house is now…a MESS (like hers she says).  A constant, cluttery mess.  It took me a while to figure out what the heck is going on with that.  Both Jonathan and I are neat freaks.  Clutter drives me bonkers and makes me crabby.  But cluttered it is around here these days.  And crabby am I.   It hit me one day while I was wrestling Trevy’s shorts…pull-up…and undies around his ankles.  We’re trying the undie/pull up combo in hopes of helping him feel wet while keeping his shorts dry.  Pulling it all down is a 5 minute process on a good day.  Good meaning he’s helping pull them down and rather than reaching for everything within even a hint of touching distance.  Most of the time he’s 40 pounds o...

    We probably won’t know the full extent of Trevy’s vision deficit until he’s able to articulate shapes and numbers and such better.   But what we do know is this:  directly resulting from surgery he lost the right peripheral field in both eyes.   Which is why this website caught my attention.  Some of the activities are over Trevy’s cognitive place right now.  But I think it’s a tool worth trying.  And certainly worth bookmarking!   Another vision tip Dr. Eyes gave us:  Place a red vertical line at the end of any pre-reading charts and such that Trevy is required to scan.  As he learns to read we will carry this over and have red lines marking the end of each word and then sentence.  Our goal is teaching him to continue to scan to the end…rather than stopping at his blind spot.   If you know of any other vision building tools to help make little eyes work please share in comments!    …danielle ...

          …danielle

  Every June our local children’s hospital hosts a very special event for families battling chronic childhood illnesses on a daily basis.  Free food…free fun…fabulous exhibits!  It’s always so special and wonderful!  This year’s was no exception!  My eyes started misting at the gates!        Thank goodness last night was SO wonderful and fun.  It’ll give us a lot to “talk” about on our way to Boston Children’s today.  Where Trevy is scheduled for a sedated MRI.  (read: FASTING YUCK!)  Hopefully we’ll be able to distract him with lots of “zoo” chat?!  This is his first MRI post surgery.  I’m anxious to know the results!    …danielle  

  As Barbara (of therextras ) my fave online therapist suggested, I tried the standing up potty clean-up yesterday.    I wouldn’t call it a failure.    Because every new thing ( thing meaning any and every thing that comes to your mind) in Trevy’s world often ( often meaning always) takes multiple attempts to be successful.  Which is why my tendency to give up so easily needs a major attitude adjustment .    So, while I won’t label it a failed first attempt.  I can’t call it successful either.  Except for successfully making me laugh.  Because for some reason…I find Trevy’s “Sensory Face” hilarious.  It’s like a cringe/grimace/smile/full body contortion all rolled in one.  And it’s just too funny-cute.  Especially with his little hands to the wall like a felon (which he kinda is if you ask me.  Potty Training for this long is a crime!)  So he was hands to the wall…full on Sensory Face…PLUS squeezi...

  Grams works with Trevy every Monday.  This is a picture she sent me after one of his lessons…     That “so proud of myself” face is just too much!  …danielle

  If I’ve said it once…   His greatest asset (the cute face, of course) is also his biggest detriment (it’s hard not to laugh at cheeky when a face that cute is the mastermind).    Which is why I thoroughly appreciated the write up in his notebook today.  Trevy has a new Miss. ABA working with him twice a week.  She had this to say about today’s session:   “Trevor did an overall good job today.  A little non-compliant at times and silly …”    Am I terrible for finding a write-up hilarious?!    …danielle