happy being trevy

If it's possible to have conversations made up of single (approximated) words and long processing pauses... Then I'm thinking we're getting mighty close! Trevor will spend a solid 10 minutes pointing to various random objects and either approximate without prompting what he thinks they are.  Or approximate me when I tell him what he's pointing at. And he knows what he's trying to communicate.  If I guess right...he celebrates with this bizarre but deliciously hysterical cackle laugh.  If I guess wrong...he complains.  Loudly.  And when all else fails he grabs my hand to hand-over-hand me !   He's getting more and more opinionated by the day!  Not that I've ever been one to enjoy a temper tantrum really.  But my heart does soar when he gets SO mad each time he doesn't get his way.  And he's just started doing this hilarious thing where he fake sobs and puts his hand over his mouth.  I am SO going to try and catch that on fi...

Jonathan's mom (Bibi) is spending some quality time with us this week. Hence the absence.   ::smile::  In other news... word on FB street - Broc is doing well and staying relatively pain free.  There has been a shift in direction.  Tomorrow he will have the second surgery.  However, it will not be a resection but rather a Corpus Colostomy .  The grids will remain in place over the weekend as scheduled and will hopefully detect with clarity a focus.  Which would lead to a 3rd surgery on Monday.  We're still praying... 

Dr. Neuro said something during our last visit that shook me a bit. And left me wondering. If maybe I misunderstood or was misrepresenting Trevy's brain surgery. You know they can't remove a whole hemisphere, right? She said. I knew they'd left Trevy's motor strip in place. But no. Other than that I've been pretty much convinced the rest of the tissue was removed. It has randomly haunted my thoughts during moments of idolness. Until finally I started trying to cipher the medical records I have organized in thick color coded binders. My eyes swam. And my brain swirled. Med speak makes me dizzy. So I cheated. And emailed Dr. Rockstar for clarification. He responded this: The removed areas include: (i) the left frontal lobe , (ii) parietal lobe , (iii) temporal lobe and (iv) occipital lobe.A portion of the left frontal and parietal lobes (i.e.: sensorimotor cortex in the left hemisphere) was preserved. Which I guess may not be a whole hemisphere. Techn...

I arrived late. The gathering space was already hushed in preparation for The Lord's Supper. Jonathan was preparing to pray. I involuntarily started tip-toeing softly to my seat so as not to be disruptive. Which would have worked quite nicely had Trevy not spotted me. Mama! Mama! His cry split the reflective mood wide open. Those closest to us chuckled. They've known Trevy for over two years now. And marvel at his miracle moments with us. Every vocalization is a miracle. I smiled. He beamed and reached for me. It would have been a sweet snuggle moment if he had not insisted on pointing to every single object and approximating with gusto what he thought it was. He has very little respect for the solemness of communion. Somehow I think Jesus is okay with that. But I did the responsible mommy thing and shushed him anyway. It would have worked quite nicely too. If he wasn't currently in an imitate everything phase. He scrunched his little face up in this w...

Under his cute little face hides a very mischievous little boy more curious than the Cheshire cat. With lightening legs. And that's including his residual limp! Which is why we never leave home without one of these... We have one for each car AND a spare! All of which are used often. And are very loved. By mommy. And daddy. Grams. Pretty much anybody that's ever had Trevy duty actually. ::smile:: But One of our goals is to eventually wean the leash. I refuse to define eventually. ::sigh:: To help us move towards our leash-less goal we began implementing a fun little game called Stop - Go. You can play it pretty much any where there is space to run. In fact, that's kinda the point. So the next time your little run away starts to make a break for it... Try grabbing his hand and saying in a playful voice "STOP". (the more like a game you can make it feel the easier it will be on everyone) while causing you both to come to a halt. Pause. (I like to wait...

You're jealous of those who can take advantage of the pharmacy's auto refill program. But it never fails...every time you try there's bound to be another dosage change. and You never take the same route twice to the pharmacy. You know...to prevent noticing of the hundred dollars worth of (legal) narcotic pick ups you orchestrate several times a month.

I have a bout of momentary panic daily. Because Trevy is very mobile... Because Trevy is very unaware of danger... Because Trevy still puts every.single.thing into his mouth... Because Trevy requires 100% supervision 100% of the time... Because daily there will be a moment when I let my gaurd down and do something crazy like... Pee. With the door closed. Make a milk. A snack. Read an email. Get dressed? Something that requires a fraction of my attention focused elsewhere. And in that moment anything can happen. And has happened! (Remember the time he escaped ? Or fell down the stairs ?) So this morning as I was preparing for a trip to the zoo I took my eyes off him for a moment. And in that moment he vanished. I had no idea where he was. No idea. I began frantically calling his name. No answer. Not entirely surprising as he's non-verbal(ish). But I was hoping for a head popping out of hiding or something. I began frantically making sure all the windows (we were ...

Upon finally finding a moment to clean the kitchen counters you discover enough loose Topomax sprinkles underneath small applicances and other kitchen decor (stacks of bills, sippy cups and dirty dishes) to adequately supply next month's refill!

RedFish Puzzle (grab yours here ) Cost FREE Description (in their words) Let your children PLAY & LEARN with RedFish, a chock-full of creative exercises, learning activities, and open-ended play. Played by children, tested by educators and approved by parents all over the World, RedFish is featuring an elegant touch interface, charming graphics and offers hours of delightful interaction for children aged 2-7. Enjoy the puzzle made with... a Red Fish. Designed by artists, psychologists and interaction specialists, the Redfish experience takes place in a colorful playroom, in which children find their way around in no time. They will be proud of their achievements and will want to share their discoveries with you. Let them play freely with Redfish, you'll be amazed what those developing brains can do while having lots of fun and laughter. With RedFish, FUN and LEARN finally mean the same thing, your children will love it! A Mommy Review (in m...

The hubs and I spent the weekend surfing the web in the hopes of hunting down (free-ish) Trevy friendly apps. Some luck was found. But mostly not really. We've downloaded and deleted a dozen or so already. So in an endeavor to add our voice to the noise... I will be randomly sharing our... iPad app of the day I informed Jonathan of my idea to generously help other new iPad owners with youngsters in need of education saturation. His response - clearly the iPad purchase was really just to beef up my blog posts. ::smile:: ******************** Sound Touch Lite (grab yours here ) Cost FREE! **I've discovered "lite" means a less exhaustive and therefore free version** Description 144 sounds & images of: animals, birds, vehicles, musical instruments and household objects Love Love Love this app! The screen is easy to understand and use. Simply tap a picture to hear the sounds and see another picture of the same subject. I e...

Don't ask me how we landed here... Just trust me when I say it's hilarious! Especially if you happen to have an Elmo Lover in the house. ::smile:: And if you like the one above - Jonathan says this one will really have you in stitches... Coincidentally...he's on his way to pick up our Chinese take-out for dinner as I type. Also Toby spent large portions of the afternoon watching every Sesame Street prank call he could find. He's down and out today with "the bug" that's been systematically getting us one by one. Claims the laughter made his bones less achy. ::wink::

After months of (nagging) persuading... I finally successfully convinced him that getting Trevy an iPad is a need So after Trevy's nap (3 hour naps are torture sometimes!) we piled the kiddos in the car and set out for our nearest Apple store. Which upon entering it became abundantly clear... We are so not cool enough to hang there! The place was positively teeming with people and gizmos of all shapes and sizes! And the noise. I could hardly think! It was a bit of sensory overload for Trevy, actually. Because he's non-verbal (ish) I have become a master at reading his body lingo. He was radiating insecurity ques. Mute. Wide (panicked) eyes. Repetitive pulling of the belly region of his shirt in-out-in-out-in-out. Clingy. Pointing at the exit. I swooped Trevy up and went for a walk while daddy endured the up-sell attempt by the spiky haired sales dude. I'll tell ya who wasn't insecure though... Toby and Bri! Can you believe my little nerds figured out how to ...

I don't know about you... but I happen to think it's an iPad kinda day. ::smile::

It may come as a bit of a shocker. But. I don't spill all my guts here. ::in unison drop jaw and gasp:: Lots of drama on the side happening. Some has been sorted. Some still pending. All emotionally draining. And I find my creativity flows directly through my emotions. That would be my excuse for the creativity drought as of late. ::smile::

Trevy did pee pee on the potty! Again!!! That makes number three! He thought my animated excitement was H.I.L.A.R.I.O.U.S. And was giggling like a monkey. Which made for a bit of a messy scene. It's hard to make sure everything is pointing DOWN and IN when one is in stitches over the crazy mommy hopping and happy dancing in circles around an adorable toddler seated on a Cars potty! ::smile::

Holy Moly is he smitten! At first it was cute. Cause he says "pooooooh" just so deliciously. Mommy was SO smitten by the cute that what could she do but? Go to YouTube of course! To find all the Pooh-ish things to be found. Trevy's favorite... For weeks now Trevy points at the computer (which may need to be hidden in the basement or a closet if we're ever to have peace again) and shouts "poooooooh"! Over and over and over again until I finally give up on emailing or posting and relent. He's upped the anti lately too. And has taken to literally fighting his way (cause I'm pushing him off!) up into my lap and when I say "wait a minute, Trevy" he'll take my face in his hands and force me to look at him. So he can say "poooooh" a million times in a row. Just in case I missed the million time before, I guess. ::smile:: So this morning when daddy was his target. Cause he was stationed at the computer trying to do somethi...

I'm Italian-ish. Which likely explains my sappy-ness. When I read something that makes my sappy stream...I have this unquenchable need for others to read it to. So we can splash in the sap together. ********** For Jessica (from her mother Jennifer Lawler ) A couple of weeks ago, a friend of mine and I were talking about a study she’d just read, which concluded that people without children were happier than people with children; or, to put it more precisely, despite what conventional wisdom holds, the study found that having children did not increase anyone’s happiness. At which all I could do was burst out laughing. Because, well. Duh. Only an academic would undertake a study like this, defining happiness as something along the lines of “satisfaction with life” and “feeling rewarded by your work.” If there’s an occupation more likely to make you feel incompetent and unrewarded than being a parent, I have never heard of it. If you weren’t an aca...