happy being trevy

that's how Trevy's face looked in the middle of the night. According to Jonathan. Who proves his love by taking the night shifts. We've had an especially rough go of sleep in our house recently. When I say rough...I mean waking 5-6 times at least every night! And evidently last night...while I was snug as a bug on a futon in the other room with the big kids...Jonathan reached his exasperation point. And plopped the little Sleep Stealer back in his crib. Experimenting to see if Trevy would give up the fight and just go back to sleep on his own. He slipped outta the room...and crying went (miraculously) silent. 15 quiet minutes later Jonathan...thinking Trevy was sleeping...went to slink (so as not to wake the baby) back in bed. Only to find himself toe-to-toe with our little Houdini! Who gave himself the shock of his life when his escape attempt succeeded! And his little face looked like he'd seen a ghost... Jonathan's a great story teller. Which is why ...

Email update from Jonathan's mom... "Thanks so much. Jonathan is quite the fighter. He already has the breathing tube out (yesterday morning) and they just took the foley catheter out. Right now we're still in ICU. He's been through so much, but he hardly complains. He's my hero! www.caringbridge.org/ga/jonathandadalt " I recieved an email this morning from our Discovering ME (My Epilepsy) coordinator asking for special prayers today... A little 10 year old boy in our area will be under-going surgery to remove (another) brain tumor. Soooooo...if you're the praying type...I'm asking on behalf of his family that you join me in saturating little Jon's today in prayer!

To the various cyber-friends who took the time to send us Christmas cards...and even gifts! Thank you SO much! I had good intentions...to send out cards this year. I even took cute kiddo pics early autumn with the intention of printing picture cards this year. That SO didn't happen... ::smile:: Which makes your thoughtfulness that much sweeter! Maybe I should ask for a picture printer for my birthday this year? From February should give me enough time to print out next year's cards...right?! xoxoxoxo

will be spent doing a little of this... and a bit of this... and a LOT of this... Hopefully next weekend the CRAZY will be replaced be COZY!

Have you heard about the Legend of Christmas St eve ? Really?! Well...Christmas St eve visits our home every year on the night before Christmas. He leaves special Christmas St eve jamies to be worn that very special night. And stockings filled with preview packages to whet the appetites of rosy cheeked children! Like they need any encouragement... We just love Christmas St eve ! And little girls who have BIG imaginations! ********************* The Scene: We had a slumber party with the kiddos last night. And for some reason Toby woke me up at 4am...and neither of us could get back to sleep again! Ugh! I am not resilient in the lack of sleep depot! Toby however was none the worse for the wear... Which is why I croaked out in a grumpy voice... Tobin...I'm glad you're not cranky like me when you lose sleep... Toby all bright eyed and bushy tailed responds... Well you know when you have entertainment like Pokemon to watch or... (holding out his new gameboy which the big softies (...

Bristel : Mommy? Me: Mmmmm Hmmmm .... Bristel : I wish I could see you kissing Santa Claus! ****************** The Scene: Toby's mystery rash was pretty freaky looking. Jonathan was insistent (in front of our easily influenced first born) it looked like poison ivy. Ummmm ...I think he forgot it's stinkin ' winter! Anyway...so Toby and I are in Dr. Pedi's waiting room. Toby: (staring intensely at his fingers) OH NO! (Toby does not have an inside voice) Me: What?! Toby: I think I see the poison oil on my fingers! A few minutes later Toby: OH NO! Me: Shhhhhhhh ! Toby: But Mom I just recognized something! Me: ( exasperated ) What?! Toby: There's no way I can do school today! The poison oil will get on all my papers! Me: Tobin! We don't even know what you have yet! (and there may have been some cursing of a certain husband under my breath?) A few minutes after that Receptionist: Mrs. Foltz what should I put as Toby's reason to be seen today? Me: (jumping ...

So remember the recent Toby lost his Gameboy saga? Well... I am SO proud of my big kid! Not only has he been an amazing helper recently. He also stopped complaining & begging for a new one along the way! This is a HUGE deal for Toby...my badger-er! That's my nick for the persistant coming at every different angle questions... Of course every now and then he just can't help himself. For instance...our new home also happens to be just a few doors down from another for sale where we (really he) think it may have been left behind. Thus this recent convo... Toby: Mom...can I go ask them if they found it? Me: Noooooo... ::pause:: Me: I mean...if you get to know the children who live there then maybe you can ask? But honestly Toby...I doubt you'll get it back. Besides we don't even know for sure that's where you left it... ::smokey from his little mental wheels spinning silence:: Toby: Well then...when the kids are in school can I go ask the mom? Other ...

If I decorate my house perfectly with lovely plaid bows, strands of twinkling lights, and shiny glass balls, but do not show love to my family - I'm just another decorator. If I slave away in the kitchen, baking dozens of Christmas cookies, preparing gourmet meals, and arranging a beautifully adorned table at mealtime, but do not show love to my family - I'm just another cook. If I work at the soup kitchen, carol in the nursing home, and give all that I have to charity, but do not show love to my family - It profits me nothing. If I trim the spruce with shimmering angels and crocheted snowflakes, attend a myriad of holiday parties, and sing in the choir's cantata but do not focus on Christ, I have missed the point. Love stops the cooking to hug the child. Love sets aside the decorating to kiss the husband. Love is kind, though harried and tired. Love doesn't envy another home that has coordinated Christmas china and table linens. Love doesn't yell at the kids to ge...

what my Honey Bun bought me for our 9th anniversary (which is today btw!)???? A HOUSE!!!!! and I LOVE it! Now...if we could just get rid of all this "white crap" we could actually move in or something! Babe...it's been an amazing 9 years together! Filled with roller coaster rides of adventure! Whaddya think? You up for another 9????

Good news if you're a Sabril enthusiast! You have until December 23rd to share your written opinion regarding the pending FDA review of Sabril (aka. Vigabatrin ) to be used in the treatment of Infantile Spasms. Click here if you'd like to get your advocate groove on too!

Several months ago I was contacted by the Epilepsy Foundation. They asked if I would be willing to participate in the pending Vigabatrin FDA hearing on their behalf. Flattered as I was...Trevy's spasms had literally just resurfaced. And my AED knowledge was limited to ACTH. Not to mention my emotional status was fluctuating between basket case & zombie mommy. So I declined. ::smile:: But not without giving them the name of someone I felt would be a perfect fit. She has a virtual vault of Vigabatrin knowledge. And personal passion blended in as well. A perfect match. As far as I was concerned that chapter was closed. And other than a stray thought here & there life zoomed onward until the FDA hearing became just a blurry crossing-my-fingers-for-approval-mixed-with-OVATION-apprehension event in the future. Until... a couple weeks ago I was contacted again. These people are persistent! ::wink:: This time gave me pause. My zombie mommy days are less frequent. I think. And with...

Last summer I testified before the JEC in DC regarding Questcor's (outrageous) price point for ACTH. In that hearing I was given the opportunity to spill our family's guts before the panel members about how the pricing (hellish-ly) impacted our journey to provide Trevor with immediate...critically necessary...treatment. During that hearing I heard something that has haunted me since. I learned that... Questcor was not the only company taking advantage of people who find themselves facing unimaginable horror. OVATION Pharmaceuticals was also being presented for their own trespasses against families in desperate situations. Shortly after purchasing Indocin I.V. ( the drug used to treat preemie babies who are born with holes in their hearts) they hiked the price by 1300%! Why should I care? Other than having a conscience ...I also knew that... OVATION Pharmaceuticals Inc. has acquired the exclusive North American rights for two drugs to treat epilepsy, Sabril and Frisium, from...

At this point there's no doubt. ACTH will not be providing us more than one miracle. Which is why this study peaked my interest. It indicates that Vigabatrin may be a better option for treating Infantile Spasms in children with Cortical Dysplasia . We're still on The Hunt for the under lying cause of Trevor's IS. (this post was written in September...but for some reason I never got around to publishing it. I feel the information is worth a read. Even a few months later. ::smile::)

What: Epilepsy Surgery: What's it all about ( presented by BlogTalkRadio) - Dr. Orrin Devinsky of NYU is the co-founder of the Epilepsy Therapy Project. He will be interviewed by Epilepsy.com's Resource Specialist Patty Shafter regarding the ins & outs of Epilepsy Surgery as a choice for seizure control. Topics will include: Who is eligible? How do you know if you're a candidate? And other related issues... When: Tuesday December 16th at 8pm EST Other information: Tomorrow evening you can listen as the show is aired live...but you can also participate in the chat during the show! And should you miss the discussion...the show will be archived and you can listen at your convience!

Every time it just gets better! Maybe it's 'cause I really did have Christmas down in Africa? ::smile:: Thanks Shanna for posting it first!

Both my dad and my brother made their local papers. In the same week. Kewl beans! And does that make me famous too?

The Snow Day... Pop-Pop & Grams' Special Day... The Discovering ME Fall Fest Day... The Who's Your Best Buddy Day... Play Outside While You Can Day... The I Can't Wait Til' it's Summer Again Flashback Day...

Ugh! Why did I have to go and open my stinkin' big mouth?!?!?! I waited until the end of the week to bring it up. Not that I'm superstitious mind you. I waited until Jonathan... and Grams... agreed. Until it wasn't just me. But Murphy's (freakin') Law. Shortly after (and probably before many even read the below post) I said it out loud that we suspected Vigabatrin was perhaps maybe could be doing something. Possibly. Trevy had a massive (over 40 seizures) cluster. And then later another. And this is what it feels like to open your big mouth. Saying your hopes out loud. And then watching them crash around you again. It sucks! Ugh... But on a happier note. We close next week! And I couldn't resist stopping by our (almost) house since I was in the neighborhood anyway. Pure luck. ::wink wink:: I even let the kiddos run around our (almost) yard for a few. I was mid-buckle routine when an oil truck pulled up. I thought surely it was for the neighbors house. ...

But... Since we increased (on Monday) Trevy's Vigabatrin dose to 1000 mgs (500mg in the am & 500mg in the pm) there has been a gradual reduction in seizures! We're somewhere in the 20-30 daily range... which is significantly less than the 80-100 range Trevy's spasms have risen to since we first noticed them resurface in September. Soooooo ... While my party pooper realistic side knows it's too soon to get overly excited... my sappy romantic side is picking out the balloons! Just in case... ::smile::

why I was a blubbering fool this morning! Make video montages at www.OneTrueMedia.com I started stalking this blog because our boys are linked. By Infantile Spasms. And before I knew it I was hooked! I love Melanie's honesty...moxy...realistic-ism! But mostly the huge love she has for Daniel! So...when I watched that video this morning I bawled like a 3rd trimester basket case ! And my heart just exploded with renewed hope for my monkey boy...and all the other beautiful IS babies out there!

Toby's my healthy kid. I swear he hasn't been sick once since the last time he had malaria. Which was just over two years ago now. Both Toby & Bri had malaria 3x each while we played missionary in Tanzania. Jonathan & I lived malaria free the entire term...which is kinda a miracle. But just over a month into our adventure Toby gave us a big scare. We were in the middle of stinkin' nowhere...although the indigenous would (wrongly) disagree with that evaluation. Because seriously...the nearest (real) hospital was over two hours away. Provided there was no traffic. And Toby's little malaria-infested parasites didn't want to give up the ghost. His fever kept rising...until he was delerious talking. A local doctor... (affectionately nicked "which doctors" by a fellow lingo school friend...because they would look at you and ask, "Which sickness do you think you have? Which medicine do you think we should give you?". And in VERY broken Engl...

It was SO lovely outside yesterday that I had the brilliant idea to go pack up & head to the best (ie. closest) park around! Although...about halfway through the bundle & buckle routine I was ready to change my mind! ::smile:: Hey Mommy...can we have THIS Christmas tree? Wow...those eyes... Brothers keepers Toby enjoying some much needed (and craved) alone time... It was my goal to caputre as many Trevy smiles & eyes as I could Bristel's chilly grin... Toby is becoming rather useful. I sent him to chase & retrieve Trevy about a thousand times! Trevy's face cracks me up. He's ovbiously loving the Catch me if you Can game! Ahhhh... I've had some seriously cranky days lately. Mommy thing? But somehow just hanging out with my kiddos...watching their little faces glow with fun... it's really nice. And sometimes the crankies even melt away. Bonus Pics... This is the view... from the top of our street... where our new house lives! I'll po...