happy being trevy

If it keeps raining like this... we may have ocean front property by the weekend! For a little context. Our house is smack in the middle of a very large hill that runs from waaaaay up there all the way doooooown to the bay. We actually have an ocean view from our bedroom. If the leaves have all fallen. And you stand just so. With your right foot on tippy toes...your left pointing thata way. ::sigh:: April showers...

My free time is precious and The Doctors are cheesy. I suppose that's why we really don't mix. ::smile:: But this video clip was posted in one of the Infantile Spasms forums I belong to. And on the cusp of having lived through it ...I swallowed my cheesy pride and clicked play. I didn't pop popcorn or anything. But I will admit that it is by far the best...most informative...segment I've seen to date. The footage is graphic at times. But frankly, doesn't touch the real life version. Three last thoughts before I send you on your video viewing way... 1 - the child in this clip has TSC and the amount of tissue removed was much less than that of Trevor and other hemi kids. But no matter how you dice it...this is a radical intervention. I just want to point out that the more tissue removed...the more hard core the recovery process. 2 - watch for the upcoming segment that flashes across the screen. Leave your response in a comment! I'll leave mine later....

A Medical Miracle: toddler doing fine after surgeons remove epileptic part of his brain Melissa Fairchild can recall every detail when her eight-month-old son, Cody, began having up to 300 seizures a day back in the fall of 2004. “We were in the car approaching the parking lot where my husband works when Cody began to scream. So I swerved into a spot, pulled him out of his car seat and positioned him against the steering wheel to see if I could calm him down. That’s when his eyes rolled back, his head fell forward and his arms flew up in the air. I just freaked,” she said. Eventually, Cody was diagnosed with a malignant form of epilepsy – infantile spasms characterized by seizures called “drop attacks.” On some days he experienced 60 to 70 of them in clusters. Over the next several months, different medications were tried – and failed -- to control Cody’s seizures. So his neurologist in Toledo referred Cody to Harry Chugani, M.D., chief of pediatric neurology and direct...

Toby to Trevy (who has decent aim and was karate chopping at him) during a recent car ride... Stop torturing me! ********* Do I look beautiful today, mommy? Asks Bristel from where she was perched on the stairs. Modeling out grown jeans and a too-tight t-shirt. Hair going every which way. Looking adorably...Bristel-ish. Always ...I replied. She flashed her dimples and simultaneously unplugged her sucking thumb while dropping her blankie in the basket. I've decided I'm not going to suck my thumb on days I wear beautiful things! Isn't that a good idea? She's convinced her blankie makes her suck her thumb. Which is really cute. But do I tell her that I don't mind her blankie snuggling thumb sucking ways...cause it means she still my baby? ****** Toby says about his sister... She sure doesn't love her posse! When asked to define who exactly her posse was...he informed... That would be us! Her family! ********** Bristel was rosy cheeked and holding Callie by ...

Trevy will be attending an integrated half day school program. Four days a week. Integrated means approximately half of the class will be IEP kids. Half will be peer models. Not every IEP child will be as delayed or involved as Trevy. In fact...I took Trevy to sample the class this past Tuesday. We were there about 2 hours. So I was able to soak in quite a bit. And looking around the class...chatting with his peers...doing crafts and snack time beside them...I'm guessing that Trevy may have the furthest development to make up. That is just my guess. It is a co-taught class. Meaning there are two Special Educators. Plus one teacher's aide. To manage up to 15 children. Judging by all the name tags on the cubbies...it's a full class! Trevy will receive... PT once weekly for 30 minutes. OT once weekly for 30 minutes. And ST daily for 30 minutes. I have been looked in the eye and promised that as the Professionals spend time getting to know Trevy. If they discover he ...

I haven't watched it yet myself... too busy. But I fully intend to. When I can catch a second to breath. In the meantime...I hope you click here to watch the Today Show's segment about Cameron. A brave little girl. Connected to my brave little boy. For they share the same nightmare miracle.

I have a second IEP meeting today. At 3-ish. EST. I'm hoping that those who've become close to me...to Trevy...through this journey. Will do me a huge favor? Pray alongside me... That I will exude... peace... grace... clarity... charity... flexibility... and more Peace. I was reflecting today. Scratch that. I've been reflecting lately . On the past three years. And it occurred to me that I...we...have been at war from day one. D day. D as in diagnosis. I thought about using the term - advocate. Rather than war. But honestly...advocate is such a wussy term for what we've lived through. And does not adequately or honestly encompass our journey. Because the emotions raging through our hearts were much stronger than that of an advocate when we were on the phone. Sobbing and begging our insurance company to please cover the damn $150,00 drug. Because without it our seven month old child will... What? I don't even know that I can wrap what into words...

This Friday... March 26th... Is Purple Day! Will you join us by wearing purple... In honor of Trevy...and all his seizure friends?! Click here to learn more about Purple Day and the extraordinary little girl who launched the event.

We took our birthday boy (that would be Toby...Trevy's coming up soon!) to lunch today. Grams kept the littles so he could have quality blow-my-mulah-with-mom-and-dad time. That's what he wanted. We were wrapping things up with lunch at Friendly's. Jonathan and I both noticed the cute little family that were being seated a couple tables over. Mostly it was the little baby that caught our eye. He was SO cute. And made the funniest little cranky face. He looked around seven months. Which always reminds me ... Our eyes met over fries and buffalo chicken platters. And suddenly... I felt it. That little nibble deep inside. Visions of delicious swaddled up babies swirled in my head. And my heart thump thump thumped - you've always wanted a big family. Suddenly...I more than wanted another. I was craving another. In that way a girl feels down to her toes but cannot explain to her guy. So instead of trying...we just call it the baby bug. Yep. Bitten. Again....

Dear America, For the record, a shamrock is a three leaf plant. Saint Patrick used the three leaves to explain the mystery of the holy trinity - the father, the son and the holy spirit are three persons in the one God. A four leaf clover is not a symbol to celebrate St. Patricks Day. What would that represent? God, Jesu s, the Holy Spirit and Bridget from the pub... Oh and by the way, it's Patrick or Paddy not Patty. Patty is a girls name. Sincerely, an Irish Woman

It's not that he's strong willed, really... It's just that he's persistent! Summarizes me. Drenched in sweat and stressed out mommy. After having placed him promptly in time out at least a dozen times in a row. For the same thing. Whereupon once seated firmly on the cheeky pillow he proceeds to make the door stopper thingie ~ booooing ~ repeatedly. Without missing a beat then reaches for the the desk drawer pulls. Because they make a fun sound when they flap like that. And they're within arms reach. My time out rule is... butt on pillow . Hands...may move freely about the area. Which is probably how he ended up sockless. And lifting a leg. So that the foot was just so. Perfect for bringing the big toe into sucking position. Because evidently...that's how cheeky boys like to spend their time outs. Sucking their toes and making boing-y things boing. I think he could do this all day. Easy. Where'd I put those IEP papers? I'll sign them!!! ...

...is tomorrow! Think of me... Pray for me... If you're not comfy with praying...send me happy be strong vibes... I've promised myself that I will not sign anything tomorrow. Not because I disagree. Cause maybe I will. But simply because I need a couple days to let the information saturate first. But like I told another mommy today. It's easy to talk all brave. And advocate-ish. But sitting there. In the conference room. With all those expectant eyes staring. Well...it's just easy to lose steam. I'll let you know which way it went... ...once I'm on the other side!

Well...that's a loaded question. With a multi-layered answer. For one thing...it's nigh impossible to find the time! Literally...I have two hours a day. Two precious hours. That would be when Trevy's napping. Which is really the only time of day that he's not wreaking havoc. Ahem...I mean exploring. And two hours really boils down to two minutes. Because I have two other children. Who no longer nap. Although I've been kicking around the idea of reimplementing... Almost nine year old boys still need naps...right?! Anyway. You get the drift. Trevy is keeping me hopping. Which brings me to another layer of my answer. Trevy is doing wonderful! And I want to dance and celebrate and climb on the rooftop and announce his amazingness to the world! We are seeing developmental forward movement. He had maybe...on a slightly less foggy day...two words. Tops. Before surgery. Now he has at least 30! His pronunciation is very immature. Baby- ish . And you ...

Which you may be shocked to learn IS NOT Trevy! In this instance... It's his beautiful courageous amazing little heart throb buddy... Connor ! Click here to see for yourself and vote him in as THE cutest kid!