happy being trevy

Some days I miss being there, you know. Speaking Swahili with Bibi Mary wearing flour on our faces instead of makeup ( cause it's just too darn hot & homemade tortillas are messy ). Going over Kevin's homework in the back yard while Bristel splashes in the wading pool that we were lucky enough to find - amazed at his ability to memorize English. Driving through the lush volcano dimpled Korogwe - one of the most beautiful places on earth in my opinion. Yes...some days I miss Tanzania. Today is NOT one of those days! Today we got a phone call that crossed seven time zones before it rang on our cell. And the news wasn't great. Now...we've gotten a few of those not-so-hot calls in our time in the States so far. Guard dog poisoned - to death. Guards arrested for theft & drug possession. Among others - less stressful. But somehow the one today really really got under my skin. Today we were informed that approximately $2700 ( insured value - I'm SO glad your Dadd...

We look SO happy --- and yet this was our morning convo Me: Hon, do you mind if I go online for a sec? --- Him: I'm having that engraved on your tombstone! --- Me: Sooooo...that's a yes?

http://www.epilepsy.com/node/3004?print=true I had already signed a release form months ago...and was assured as the EEG reports were filed they would be mailed directly to me. I was cynical. Which was spot on...since you've had 4 EEGs and I had yet to receive even one report. And the office manager could not find my signed release form. But of course... we're the idiots - not that I'm bitter mind you! I waited until I had ALL the reports in hand before leaving - although I think she was hoping I'd trust her to mail them again. I was glued to the reports and as I read the findings I found myself more confused & less confident - in my knowledge. We (daddy & me) thought that you had A focus. But the reports indicated several possible foci . Somehow the thought of foci as opposed to focus hit me like a ton of bricks! We were under the impression that the epileptiform activity was only while you were sleeping. The report states " The amount of activi...

Okay...so today is my birthday (32 - for the nosey ones)...and Jonathan (thanks hon!) is letting me have play time on the computer for an early morning gift! Later tonight...we'll brave the elements (snowy-slushy- wintry mess) and go out for dinner & a movie! (thanks Grams!) But in the meantime...here's my 1st video posted to youtube ...made available on my blog...we'll see if it works! :O) My monkey-man having fun & makin ' mommy happy at Music Class! And another happy one! Right before Trev was dx with Infantile Spasms...we were able to go to Disney World. That is one decision we will NEVER regret...it gives us such happy memories! Although Bri-bee is now obsessed with all things Magic Kingdom...and even sleeps in her Cinderella gown dreaming of living in her castle! This clip of her meeting Mickey is just priceless...to us of course! **editors note** In fact, mere minutes after publishing this post...a WDW commercial came on...those people know how t...

Part of the "joy" of EEG-days is the mean...heartless...almost inhumane...task of keeping you awake. The best readings are the sleeping readings. Sooooo ...I pulled out every trick in the book on the 30+ minute drive to the hospital...and it worked...you were cranky BUT awake! If it was arctic outside...it was sauna in. But... we had a different room...and tech today. A change of scenery was nice. And daddy successfully lulled you to sleep. You're so beautiful when you sleep...those eyelashes are to die for. Daddy & I really liked the tech today...he was very thorough & was witness to those "jerky" movements you've been having in your sleep. Even though Dr. H probably won't call until next week ( sheesh ...vacations!) our amateur deciphering of the squiggles & techie poker faces has us believing that this EEG was not clean. Perhaps even a bit worse. And for some reason the goop today was really really thick. Usually I try to wash it mo...

*sigh* Yes...tomorrow brings the chance of snow & another trip to Hasbro for yet another EEG. EEGs have never been a favorite - even if the pics do turn out cute. But for some reason...tomorrow feels really heavy. Maybe it's the shock wearing off? Maybe it's lack of sleep - your's & our's? Maybe it's because daddy - Mr. Drama Free himself - is worried about some "jerkies" you've been having recently? Maybe it's because I've been missing Tanzania lately? Maybe it's that our life feels so unbalanced - unsettled - crazy ? Maybe it's just silly ol' hormones? Maybe it's because some of your little friends have been in & out of the hospital - with serious stuff? Maybe it's just the sum of everything? *sigh* I just feel really heavy . And sad. So so sad. I just hope Dr. H calls us with the news as soon as she reads the squiggles. And...I'm going to attempt to not try and cipher the squiggles myself. Although I wil...

Let the music therapy begin... Daddy was able to join us for this one Move your groove thing Bristel! I p romise - it won't bite, Trev! Peek-a-boo Slime Monster Touch your toes Who needs Music therapy when you have Big Sister-apy We love watching you learn new things, Trev!

If I didn't know better... But there's no way. Impossible. --- But it really seemed like you did. --- Yeah...I'm pretty sure... --- I remember we were walking towards the kitchen. I was holding you...in your birthday suit & a towel. It was bath time people! --- When suddenly it happened. But it couldn't have! Could it? --- I don't know...but it sure seemed like you leaned in... --- mouth open wide...drool streaming...and slapped one on me! --- a BIG FAT Valentine's kiss! --- Seriously...why is a slobbery baby french kiss SO darn cute!

Your big brother is at such a fun age. I've always been a fan of 1st graders. So smart. So cute. So funny. The boys in particular. I'm SO proud of how well he's doing with his school too! ( btw a BIG thank-you to Grams! I wish I could adequately communicate how much your support & help has meant to me through all of this craziness! I couldn't be doing any of this without you! Seriously ! I love you, Mom! ) Every morning Toby is dressed - teeth brushed - hair sometimes - and sitting on a stool in Grams' kitchen waiting for Super Teacher (aka Grams-to you. Mom-to me) to make her appearance. (btw...Yes...we're currently one of those crazy homeschooling families! ;o) Grams does most of the teaching. I get the crumbs...ahem...I mean reading time. And impressed is an understatement of how I feel about the skills he's acquired! My boy can read. Almost anything! Boxes of cereal. Commercials. Words I'm spelling to Daddy! Today Tobes & I were curled up to...

So it would appear that we'll be first in line Monday morning. For the doctor. Cause you're not sleeping again! Ugh! I knew I should have taken Dr. Neuro up on her offer to refer us to an ENT! Maybe you'd have tubes already! And we'd all be sleeping better?! I like sleeping better... Oh...and those numbing drops... They work"ed" great! Operative letters being "ed"...which your big brother informs me qualify as a suffix! When did he learn about suffixes?

Three years ago I held you for the first time...a wrinkly pink bundle snuggled near my heart. Your dimpled smile was so sweet... but I must admit, I never imagined myself with a little girl . I've always been kinda tom-boyish...playing sports with the guys. Not exactly dainty... 3 rough & tumble boys is what I'd always pictured myself with... Then you came along. With your passion for all things girl"ish". A lover of sparkly shoes & mommy's makeup. Telling other kids that your name is Cinderella...as you strut your stuff in a tutu! And suddenly I can't picture myself without a little girl . So happy ballerina birthday! Mommy loves you TOO much!

S - L - E - E - P It has been months since you've had a good night's (or day's for that matter) sleep. Night waking is one red flags of Infantile Spasms...although we were chalking it up to teeth. Ugh! Do you know that at just 2 weeks old you were sleeping from 8 - 8! I used to brag about it. Daddy & I have been craving that kinda sleep for months now! We've tried everything too! But between seizures & hospital stays & persistant ear infections - no luck chuck! Finally though - after numbing ear drops (who knew) & 3 rounds of antibiotics (tubes are the next step) to get rid of this pesky ear infection - you have slept for THREE nights in a row! Soooo... this is what it feels like to have a refreshing nights sleep! In the spirit of which...I'm breaking out my cheerleader groove and saying "rah rah" for another night!