happy being trevy

It's more annoying than anything. Okay.  So that's not entirely honest.  Because changing his meds scares the absolute crap outta me.   But it's annoying that we have to repeat the stick so soon. And it's annoying that the results of the last draw are getting to me.  In the head.  And heart.   It's annoying to still feel scared.  I thought I was long past this phase.  I thought I had grown some.    And, as an aside, people in my "other" (meaning non seizure) life are annoying the crap outta me lately too.  Especially those who have little to no clue (or compassion) on the fact that life with Trevy affects every facet of who I am.  We had someone sit in our living room and criticize our leadership two months after half of Trevy's brain was chopped out of his head and say to us point blank, "Well, it's been two months".  Like, duh, you should totally be over it by now.  I mean, two months, really...i...

Oh maaaaan... I wanted to be the hero!  Toby complained when I told him to put his offered quarter back in his pocket as I'd successfully dug the nine cents needed outta the bottom of my purse. *********** I find myself wondering just how much the big kids picking on Trevy used to go unnoticed.  By pick on I mean...pirate away his iPad or stuffing him into tutus while mommy is playing the How Much Can You Vacuum in 5 Minutes or Less game.  Because that's how long I feel safe not hearing or seeing what Trevy is up to at a time. You know.  Stuff like that.  He used to be completely non-verbal and helpless to their sneaking big kid ways.  He's now what I like to call non-verbal- ish .   Lately he's been running to me whining "maaaaaamaaaaaa" while frantically patting me and clearly tattle taling. It is not uncommon to hear me remind the big kids, You do understand he knows how to tell on you now, right? **********  Callie is a lap...

I thought it might be best to save the hard-core for last.  So I'm starting with a digital picture of the brain as offered by iTunes.  And yes...we have the app.   Trevor only has 2:6 of the regions labeled below left in his head.  I like the soft colors though.  Makes it look less creepy and more cute n' cuddly.   This one offers a little more detail.  Starting to look more...real.  But still with the soft pastels.  I read a psychology of colors article once that said pastels are calming.  Still feeling Zen?     click me! If you didn't click the image above I'm gonna sic my Italian uncles on you!  Because it gives a wonderful breakdown of the various brain controls which Trevy is missing.  You know... what he's up against.   Like missing the parts of his brain which are essential for: s peech, language, hearing...even smell .  And don't forget...although his sensory and m...

Hi Nurse Detroit... my email began... Hope all is well and you're not stuck in the snow like we are here in RI!  Brrrrrrrrrrrr... So at the risk of you thinking I'm a total loony toon... When Trevor had his Hemi (October 9th 2009) I asked Dr. Rockstar if I could see the tissue they removed.  After he stopped laughing (he said it was a first) he told me no but I could have a picture.  I never got that picture.  And I know it's late in the game...and may not be possible.  But I would really like to have that picture.  Let me know...and thanks.  You know...for not thinking I'm crazy. :)  ...danielle  ********** A handful of minutes later I got her response.  I can't help wishing I could've seen her physical reaction as she read my request.  Some year and a half later.  I wonder if she spewed a sip of coffee.  Staining her fave scrubs.  Or choked on a bit of lunch.  Or rolled her eyes at yet a...

Remember this super cute lil' video I posted a few days ago? Make video montages at www.OneTrueMedia.com I didn't think it was possible either...but it's even more adorable when you pair it with this note from Miss. Preschool! "I wanted to mention that Trevor has been joining in on conversations at the table with friends.  Some friends were talking about sledding at snack time the other day.  Trevor said,"whee" as he joined in about his experience sledding."   Now, let me set the stage.  Because I know how Trevy communicates.  It's almost like I can see it all up there.  In my mind's theater room.   There he was.  Enjoying his snack.  Surrounded by chatty friends.  When suddenly he heard his friends use the word "sled" or "sledding" and immediately started to happy glow.  Because not only did he understand that word.  But he could also contribute to the conversation!  He always stutter...

I have researched Infantile Spasms until I thought my eyes might explode.  And in all my reading and drowing in text...I have never read this.  I am certain I must have stumbled on it before.  But for some reason it did not catch my eye.  Maybe I wasn't in a place to appreciate it at the time.    An extraordinarily desperate letter from William James West (who is credited with discovering Infantile Spasms).  A letter which I believe every family dealing with Infantile Spams would benefit from reading. ********** to read in full click here . "Sir: I beg, through your valuable and extensively circulating Journal, to call the attention of the medical profession to a very rare and singular species of convulsion peculiar to young children. As the only case I have witnessed is in my own child, I shall be very grateful to any member of the profession who can give me any information on the subject, either pr...

I have Survivor's Guilt.  Okay? There I said it.  Finally.  Lord knows I've thought it for as long as I can remember.  Before radical brain surgery even.   You cannot have a child like Trevor.  Who shares a diagnosis with children like some of yours.  Children whose seizure (and/or other diagnosis) scars are more easily visible.  While he continues to bloom.  No.  You cannot have a child like Trevor and not have it tear at your heart when others suffer more.  All the while sowing the seeds of Survivor's Guilt in your soul.   Even if you do see seizures post surgery. That Guilt (or is it empathy?) has muffled my desire to share Trevor's on-going seizure activity openly.  Because I feel terrible.  Awful.  Freaking guilty!  I know the war that many of you wage on a daily basis is much more bloody than ours.  And I know that Trevor is a miracle to many IS families.    But. ...

You'll wanna turn the volume up... so you don't miss the cutest giggle. ever! Make video montages at www.OneTrueMedia.com

Miss. ABA sends home notes on a daily basis.  I've been meaning for a while now to share a sample.  I've been meaning to track Trevy's progress and link it directly to his ABA therapy.  I've been meaning to write a follow up to our Operation Big Boy Bed .  I've also been meaning to meal plan...book some playdates...schedule some field trips...paint the living room...have dinner on the table by 5:30 every night...create an at home therapy schedule...teach Bristel to read...lose 50 lbs... And a ba-gazillion other things that I won't waste any more time listing here! Instead...I'm globally lowering my personal expectations and nutshelling.  Quick Description:  Trevor's ABA is based on a 3 trial mastery concept.  He must - with no prodding - answer correctly three times in a row before moving on to the next lesson.  He has 25 lessons to complete daily.  Most days he completes half of the total lessons.  Some days he is very focused and...