happy being trevy

      If I loved Kinderbach online (which I did!) then you can consider me over the moon for the Kinderbach app !     The first two weeks of lessons are FREE !  Which means you can take it for a test drive to see if you love it as much as we do!  I have no doubt you will!     Enjoy your Pad,     …danielle

    I have a bad habit.     I print things out.  With the best of intentions.       The get stacked neatly on my desk.  Other paper work gets stacked neatly on top of that.  Before long, my pile is too big to manage so I hide it in a drawer.  Where I promptly forget all about my good intentions (among other things lost in the paperwork abyss).  Eventually, I’ll get around to cranky-cleaning stuff out.  Clutter makes me cranky.     Which is how I stumbled across one of the most adorable (and FREE ) printable mini-books.  Evah!      Daddy, Daddy Who Do You See?   by Katie Yeh of www.playingwithwords365.com     Otherwise known as my fave Speech Therapy website.           I had printed it out who knows when ago.  And then stacked, stashed, and forgot all about it.  Until I could take the stuffed drawers no more and found i...

    If you know anything about Trevy’s story …then you won’t be surprized to learn that Gifted Hands is on our family’s must watch list.  Although Dr. Carson is not an advocate for Infantile Spasms and Hemispherectomies…his work blazed an extraordinary trail.  Down which our family would eventually tread.              And you have no idea how excited I was seeing it nestled among the other newly added instant stream options on Netflix !     If you haven’t watched it and you have even a smithereen of interest…     I say go pop some corn.  And snuggle in.  After all, it’s summer tv season.  What else is there worth watching right now?!     …danielle

At the time of this posting these apps are listed as free.   As always, prices are subject to change.  So hurry up and snag them! Pepi Play is an OMGosh you NEED this app!  Especially if your little one looooves My Play Home or the Toca Boca apps.  Four different play scenes include potty, brushing teeth, laundry and bath time. Rocket Speller is fun for littles that like puzzles!   Mickey Mouse Clubhouse Road Rally appisode Enjoy your Pad! …danielle

    Independence.     My goal for Trevy in all things.     With Toby and Bristel, I didn’t have to actually teach them how to dress and undress.  The just learned how on their own.  Their little bodies have always obeyed their little whims.  And maybe Trevy would (in his own time) learn how to dress himself too?  But part of my role as his mommy and cheerleader is helping him along.  In practical ways.  By studying his abilities and areas that need more guidance. I know that he struggles with motor planning , for instance.  Meaning, he might know what he wants to do but he can’t quite figure out how to make his body do it.  His brain and his body aren’t in sync all the time.       Which is why I loved the idea of this Dressing Skills e-book (just $4.99) by Your Therapy Source !     From their website:   Summary : Dressing Skills is a 24 page booklet that provides v...

I think the very first med speak phrase we became familiar with upon entry into the Infantile Spasms Community was… Benefit versus Risk There is more clarity on the physician side of things.  They think in black and white objectivity.   Not so much on the mommy daddy side, though.  We think in the “Oh my God, this can induce what?” or “the vision loss is permanent?” murkier side of things.  Sometimes Benefit vs. Risk is really very subjective. It’s more… eenie meanie minie mo, if you ask me. When removing portions (or halves) of brains, for instance.  While the surgeon might look at me holding my completely non-verbal two year old through a cluster 50 strong and tell me there really isn’t any other choice.  The trajectory is death.  Which is ripped for our real-life story and is almost verbatim what Dr. Neuro-surge told us in his office.  The conflict that murkied the waters was…I wanted to KEEP ...

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 ...

   

        I’m super excited about a new children’s consignment store that’s opening in our community!     I love that it’s practically within walking distance.     And I double love that I’m friends with the owners and think they’re some of the sweetest people I know!     If you’re a local yokel be sure to check out Tiverton Tots …     …danielle

    We decided to be crazy and visit Mickey Mouse again.         Then we decided to be REALLY crazy and pile into our Highlander for the 22 hour (if you go straight through) journey from coastal RI to sunny FL.      (Mulan gave Trevy a juicy forehead kiss to carry with him)     Trevy did AH-mazing!  Which is not to say that there weren’t any pinching, kicking, hitting, throwing, screaming, slapping, biting and/or licking episodes along the way.  We’re thoroughly convinced that we really need to upgrade to a mini-van.  With bucket seats.  And maybe a built in straight jacket.  To protect poor Toby who took the brunt of Trevy’s wrath on the ride.  But overall, he did much better driving than our last trip by air!       (with Uncle Byron at Cracker Barrel in Richmond, VA)       Even so…       we’re exhausted.  And findi...