happy being trevy

Most of us (speaking specifically to other Infantile Spasms parents) that have been on this seizure infested journey for any length of time understand the idea and importance of saturating our Speech Delayed kiddos with as much communication input as possible.   Trevy's delays are way more complicated (as in he's completely missing the region of his brain that controls speech!) than just a speech delay and as such requires way more input.  I have (always) talked to him about everything he does.  Everything I do.  Everything we do.  Just like I did his siblings.  Who were both early verbal bloomers.   Speaking of his siblings...they are little noise makers for sure.  And constantly filling his ears to the brim with language.  Challenging his right brain to miraculously create new pathways.  Speech pathways.  Pathways that belonged to the other hemisphere which is in a jar on a shelf in some lab somewhere.  Hopefully pr...

Like the way he says his name... Trea-sure

My potty post was already brewing when Barbara (of therExtras ) mentioned hosting a blog carnival on the topic of readiness.   My post is linked over there .  Along with a slew of other wonderful reads!   You really should take a few minutes and go explore the other links along with Barbara's (always thought provoking) words...

Bleh.  Bleh .  Bleh . In case you were wondering how I feel about the topic.  I am not a potty mommy.  Never have been.  Not even with the other two neuro typical rugrats.  Which is to say, I was not all dancing a jig about potty training my not-so-neuro-typical Trevy.  It's just that I was convinced he was ready.    And things started off so well too.  No accidents at school the very first "try it out" day.  Which was a Friday and also why I don't count the accident brimming weekend that followed.  Because the week next chased with only an accident or two a day.  Pretty soon I was bragging that he was going to be a piece of cake.   Easy. Breezy. Peasy. Mommy knows best, after all.  He's totally ready .   Um.  Yeah.  Right.  Maybe not so much?  And it's driving me bonkers !  The constant inner questioning of my Trevy mommy skills is on overdrive....

I looooove Signing Time dvds!  Especially when they're on sale for just $10 each... A wonderful Easter Basket surprise!   IMHO -  I find the Baby Signing Time videos work best for Trevy.  They're less cluttered with too much to learn.  More musical.  And have eye catching cartoons. 

It's not a tricycle... but, really... who cares... when...  you're make it look this... stinkin' cute!

How's this for irony. I was reluctantly shuffling my way to the mailbox this morning. Mentally composing a "you know you're a special needs mommy" post in my head with each step.  It was going to be about how much it sucks to find medical bills, IEP letters, Insurance denials, Medicaid forms, Developmental (significant delay reflecting) evaluations...fill in the blank...waiting in the box for you on a daily basis.   It was going to lament how the joy has been sucked right out of mail gathering. Except today what do I find?   A sweet card from a super sweet friend.   (it was smushed between a bill and a Medicaid form but...)    Tucked inside was a Dunkin gift card.  Just for me!  And just what I need to help me survive this Potty Training saga and upcoming IEP and looming insurance battle over increasing therapies along with other regular life drama!   Sometimes (in between all the energy zapping advocating) being a...

A couple months ago I posted about trying to move Trevy outta the crib into his big boy bed.  It was a great thought.   We had the cute bed and everything.   But, yeah.  It took all of about two days to figure out that weren't gonna work.   I know...I know... your child is doing just fine in his/her big kid bed. That's great.  Bravo.  I'm happy for you.  Really.    Now stop bragging!      ::wink:: The fact is, it just wasn't working for Trevy.  He totally, completely, unequivocally rejected the bed.  I tried all sorts of mommy tricks to convince him it was the greatest thing ever.  He was having none of it.  And I'm believer in picking my battles.  Something that confines  keeps him  safe would help me win this one.   I convinced Jonathan that we needed to buy a Nickel Bed Tent .    But since they were back ordered for months...we had to ...

FYI After reading my SpongeBob post , Grams has been on the look out for me. The other day she found adorable multi-colored wristbands with sporty (think: baseballs, footballs) graphics at Michael's at a great price. 2 for $1. I tried to find them online to make it easy for you...but nothing doing. So far Trevy doesn't mind wearing them and they seem to be helpful playing double duty drawing his therapists eyes to Righty and reminding Trevy to use Righty too.  We're gonna stick with it until we think it's no longer effective.  

    "We tend to forget that happiness doesn't come as a result of getting something we don't have,  but rather of recognizing and appreciating what we do have.”     Fredrick Keoniq

That's right.   I'm putting the purple away and pulling out the blue. Because I've been smitten with Aidan.    Click here and I bet you will be too!

This was Trevy zonked out on the ride home from Boston Children's Monday.   I happen to think it completely captures the essence of what I mean when I call it the... Hospital Hangover.   ::smile:: 

Pssssssssssssssst... Did you hear that all Kindergarten.com's ABA apps are free for the month of April?   Click here to explore what they have to offer. 

Boy , n: a noise with dirt on it  -- Not Your Average Dictionary

I'm not sure when it happened?  I've always thought of myself as an IKEA girl.  Simple.  Clean.  Creative.  Minimalist.  Somewhere along the way...I lost the IKEA thing and became a hoarder .  Yikes!  Especially with the toys.  Oh my with the toys.  I have gobs and gobs of toys.  A basement teeming with toys.  Because.  Well.  You know.  Maybe I can use those ratty old stuffies for math manipulatives?  Or Trevy might still like that ball that rolls when you push the buttons?  And we've all heard the stories of surprise babies!      Anyway... I was inspired to purge after reading this post.  I'm not going all 40 bags in 40 days with it.  I need to bite size my hoarder rehab program. ::smile:: But I am starting today! I have three little bags of gently used items that I've already posted to Freecycle .  Which by the way ...if you haven't connected...

...and they keep trying to breathe, keep the body moving to keep the soul from atrophying... -- Amy Voskamp (expert from One Thousand Gifts: a dare to live fully right where you are )

I have been wracking my brain for a creative way to make sure Trevy uses his weak side consistently.  Because unless we (meaning everyone who plays any part in Trevy's developmental progress)  force encourage him to use it...new pathways cannot be formed.  Eventually the plasticity clock will slow or stop altogether and we'll lose this time.  This amazingly miraculous time of new pathways forming where they shouldn't.      But it's just so easy to miss.   Left.  Right.  Left?  Right?  I (along with Grams and others) have witnessed professionals missing it.  They'll comment to me on how well he's using his right hand or foot.  When I'm watching him only use his left .  Sometimes it  absolutely blows my mind too.  Especially with the hand, which is clearly hanging dead by his side. The thing is...I know he has the ability to use it.  All it takes is a gentle restraint of the left arm i...

Tomorrow is Trevy's official birthday.   We're celebrating today though.  I actually found the umph from somewhere to throw up a couple balloons and a banner.  I went with a Cars theme.    ::smile::  It's lookin' like a real party up in here!   His birthdays are always bitter-sweet.  A reminder of where he's been...where he should be...where he could be...all rolled in one.   For weeks I've felt the cloud edging around me.  A fog of sadness swirling around my heart while I try desperately to blow it away with happy thoughts.  It wasn't working.  And I found myself in a positively foul mood last night.  I'd put off shopping til' the last minute.  I'm sure there's a psychology to be unlocked in the procrastination.  But I have neither the time nor the energy to dissect it.  So suffice it to say...as much as I try to dwell on the positives (and we have many to celebrate) it still gets t...

'Nuf said.