happy being trevy

This past month has brought a (mini) explosion in Trevy's speech! Receptive and expressive. I'm blaming it on coming off the Zonisamide . And now that my heart is wrapped around releasing the Vigabatrin ...I'm actually getting a little fluttery to see if that brings another developmental boost! When I... ...point and say "No (touch...bite...throw...fill in the blank )!" Trevy'll point & say " nuuuh nuuuuh " ...ask would you like to play? Trevy (mostly) heads to the toy room ...ask would you like milk? He signs (lopsided- ly adorable) milk ...ask would you like to eat? He signs eat...and has recently added the " eeeee " sound for emphasis (he's a foodie)...and will even run to his highchair ...ask where's your coat? Trevy bangs on the coat closet door ...say go outside? He runs around like a caged maniac (it's been a looooong winter) and/or points out the window and makes the " sssss " sound ...sign & ...

I got one of those calls yesterday. The kind that leave you gasping for air. Shake your faith. Melt you into a puddle of sorrow on the floor. Which is where I was. On the floor. Tears streaming. On the phone with Jonathan...who had just taken that call of his own. The kids were thankfully with Grams. Except for Trevor. Who toddled over to me and gently wiped at the wet-ness running down my face. More curiosity than compassion. But so so comforting anyway. ************* We're not ready to spill our guts entirely... But if you're a believer in prayer. Jonathan's parents could use some...as they prepare to return to the States. As could the rest of our family.

If life were a musical... Trevy would rock it!

I took a deep breath. And another. And in between Trevy's (mad) clusters...I finally picked up the phone and made the call. To pull the Vigabatrin plug. Watching his seizures not only increase in number the past few weeks. But also intensity. So violent that they've knocked him backwards off his feet. Yesterday I almost poked his eye out playing the "where's your nose" game. A spasm jerked his little head forward with unexpected gusto. And I've just finally reached the peace point with letting go. I've said this before. But this time I'm serious. This time I actually made the call. And sent the email to follow-up. We've given it a full three months. And while we've had a handful of good days. It's not enough. Trevy's still having 50-100 seizures on any given day. And it's just not enough. So now we try Banzel .

So this was Bristel the night before her party... down for the count with the hurlie bug! I crossed my fingers...and frosted the cake... decked the table... ...and even wrapped the gifts anyway! In left over Christmas paper! And this was Bristel the next morning! Out with the hurlies...on with the party! Trevy may have had the most fun out of everybody! He LOVED playing toss n' chase with the tissue paper Poor Tobes...he didn't bounce back quite as quickly as the b-day girl. We're party minimalists. Birthdays are spent with family only. But the b-day-ee gets to choose the cake...the theme...and the food! Bristel wanted pizza...chocolate cake...soda...and a My Little Pony theme She had SO much fun that she's still talking about her My Little Pony Party! I love this pic! My gang of sicksters were totally wiped out afterwards! and spent the rest of the day camped out on the couch... Just like this!

For the interested - My shotgun commented thoughts regarding the cyber roundtable topic of National Health-Care at Marissa's Bunny ... "This topic comes up often in our home. We live in a fairly "liberal" state...and already take advantage of a demi-nationalized health insurance. State Medicaid. Honestly...after our battle with private (AIG) insurance to cover Trevy's ACTH...it was with a huge sense of relief that we entered the world of State subsidized health care. We felt safer. More protected. I agree Mike...every decision we make is now filtered through what Trevor's future needs may be. For example we opted to buy a house with a basement that could be converted into an apartment...in case Trevor is functional enough to live on his own. Almost. It's the same filter that drives me to push for more therapy. Therapy...that thank God is federally funded...because we don't have the means to provide that for Trevor. Speaking of means...or lack the...

For the Vig-crew click here to check out a liquid taurine supplement! Thanks Vegas for the tip!

Sooooo ... I'd be lying if I said the thought of Trevor losing vision (even if it is peripheral ) as a result of trialing Vigabatrin didn't weigh heavy on my heart. I act flippant. But in reality I'm not. But trading cognition for vision? We chose the former. But the study below may result in promising news for Vigabatrin trial- ees in the future! Taurine : Key to the visual toxicity of an anti-epileptic drug for children? Published: Wednesday, 18-Feb-2009 Child Health News Vigabatrin ( Sabril ), first intention molecule for the treatment of epilepsy in children, in many cases produces secondary effects that lead to an irreversible loss of vision . Serge Picaud , head of research at Inserm , and his colleagues of the Institut de la Vision have just discovered the origin of this secondary effect and have proposed strategies for limiting it. They have shown that vigabatrin provokes a marked decrease in the blood level in an amino acid, taurine , resulting in a ...

And join the conversation as presented by Marissa's dad. The pros & cons of Nationalized Healthcare have long tumbled around my noggin. Having been raised a good lil ' Republican there once was a time I would have towed the line. But now? Having been touched by unexpected illness...and all that entails. Suddenly...the lines are ever more shades of grey. Anyway...I look forward to adding my (somewhat coherent) thoughts... when I can shake the groggies ...and collect them! ::smile:: Oooooor ...you could just share yours so I can plagerize instead!

Toby with a disgusted face to me during dinner... I'd rather eat Ugali ! ******************** Bristel to us about Trevy... He's the bestest baby I've never seen! ******************** Toby to me while holding up his smashed & blackened nail ring finger... Mom, is this a swear? or this ? dropping ring finger...and waving middle man in my face instead! *********************** Bristel on the Holy Spirit... He's scaaaaary! Evidently she thinks the Holy Spirit & the Spirit of Christmas Past are one n' the same! *********************** Toby holding my wedding band... Hey Mom... ...if you die... can I sell it???? ******************** Bristel on breakfast... Can I have an American muffin? It took me a minute to figure out she meant an English Muffin! Our kids divide everything into two categories. American...and African! ****************** Trevy when told "No No!" Will either throw whatever happens to be in his toddler paws. Or he'll find his nearest...

So it's either the slow-release melatonin coupled with leaving Trevy cry for a little while... OR all those prayers for sleep going up on our behalves are being heard! Cause last night Trevor only woke up once. At mid-night. And then proceeded to snooze from midnight until 7am! Either way...we're all feeling quite refreshed! Which is nice...since I'm shortly heading out the door in route to school for Trevy ... support group for mommy ...

in gaurdian angels? This weekend I accidentally left the door at the top of our very steep stairs open. Jonathan, Trevy & I had just run up for a quick measurement or something. From our bedroom I looked over just in time to see Trevor take that first step... I screamed "Nooooooooooooo!" And knew in that instant that Trevor was going to be a pile of broken bones at the bottom. My seizure baby! His balance is awful and he tumbled from the top step all the way down to the hardwoods below. Jonathan said Trevy's angel must've carried him down the stairs and gently plopped him on the floor below. The fall itself was silent. And Trev was quickly comforted! My heart on the other hand still beats wildly every time I think about it! We're most definitely believers!

So last night we decided to let Trevor cry. For no longer than 15 minutes. I know this is controversial territory. And bloggy people tend to be ultra opinionated! ::smile:: But something had to give. And I didn't want to resort to meds...if this is not really med related. But age related. The jury's still out. Buuuuut... I will say...Trevy had a much better night. He woke first around 8:30. I went to him. Milked him. Gave him Tylenol cause I think he may be getting his two year molars. And whispered " it's night night time ". Then laid him back in bed where he rolled over and snoozed. He woke again at 10:30. Daddy's turn. Who didn't have the same roll over n' snooze luck. Trevor angry screamed. But before the timer beeped 15 all was quiet. He'd fallen asleep. Awake again around 1am. Same scenerio. Only less crying. Woke at 5:30am. Even less complaining. And for the first time in weeks Trevy slept in! Until 7:15! Like I said. Th...

Any parent dealing with pills to be swallowed by little ones will be interested in this product! I'm ordering our's today! Maybe it'll make tablet crushing a thing of the past even? Thanks Jen for the tip!

Sleep and Trevy have not been a happy combo since... oooooooh... around the time his spasms first started. In fact...the loss of our perfect little 8-8 sleeper was a clue. Only we missed it. Having never heard of Infantile Spasms. But ever since we did...getting a full night's sleep has felt a bit like chasing the end of the rainbow. Some nights we think we're closing in. Only to find the next night... and weeks ...filled with wakings. A good night these days is 3 wakes. A bad? Ever 1/2 hour. We've tried chewable Melatonin. Really hasn't helped that we've noticed. On the recommendation of a pedi neuro at the FDA hearing we tried Benadryl. No charm there either. We've tried co-sleeping. Which started out promising. But anymore half the night is spent trying to catch a very sneaky toddler before his pitter-patter feet wakes the rest of the house. He's lightening quick too. It's not unusual for the midnight hours to find Jonathan or I stumbling...

So guess what Toby named his Valentines bear? Lover! ::giggle:: I couldn't stifle the somewhat shocked laughter. But he was SO innocent. And cute. And told me it was because his bear was red ...which reminded him of Jesus...and how much Jesus loves us. And I ended up telling him Lover was a brilliant choice. Which came back to bite me in the boot when he belted out in front of Trevy's OT... Come 'ere Lover! *********************

Last Thursday Trevy was still feeling a little under the weather from the *hurlie bug* that had invaded our home over the weekend. But it was school day. And he was over the hurlie part. I thought it'd be a nice change of scenery for him. Which school btw...is really more of a playgroup with therapists. Three other kiddos with various special needs are in his class. Trevy's the only seizure boy. During class the moms visit in a room with a big blinded window where we can keep an eye on our bugaboos. I peeked to find a happy Trevy. Throwing a ball. Binky grinning. I'm not sure if I'll ever take his bink away. He looks way too cute grinning behind it. But somewhere during class Trev lost that happy vibe. And started crying. But then the most amazing things happened... He cried... ...grabbed at his coat... ::cha ching!:: ...walked to the door & tried to open it... ::did you see that?!:: ...and when that didn't produce the result he wanted... ...he walked...

I suppose it served me right for ignoring her feed me requests? ********************* Bristel's newest fave phrase... My tongue is thirsty! ********************** The Scene: Thursdays the big kiddos love to visit Grams & PopPop's church for Kid's Club. Doesn't hurt that Grams is the teacher! Anyway...the three of us were all snuggled up on the back pew. When you have small-ish children the back pew is tops! During song service I felt little eyeballs on me...and looked down to find Toby staring hard at my nose. In the ring vacinity. Can I touch it? He whispered... I (wasn't really paying attention) nodded... Next thing I know...his little kid claw was knuckle deep up my nostril! When he asked to touch my nose ring...half listening me thought for sure he meant the sparkley exterior! Evidently...the silver curly inside part is much more interesting! ************************* Ohhhh... and speaking of said ring... I found my Tanzanite nose ring in the abyss of our...

On TNT tonight @ 8pm... Gifted Hands the Ben Carson Story Cuba Gooding Jr. stars in TNT's original movie about the life of Ben Carson. And his journey from frustrated school boy to gifted neurosurgeon. More... I'm personally unfamiliar with Dr. Carson...but the story line has me wishing we'd already hooked up our DISH!

We have always had a special connection with our Dr. Neuro. I can't explain it. It's just something I feel. It helps that she positively drips with love & hope for Trevy. That's huge to (has a tendency towards pessimistic) me. And makes me wish I could clone her for other IS families. So last week when it was snowing like crazy on appointment day...I called her nurse all frantic. I NEEDED to meet with Dr. Neuro. To get her thoughts on Dr. Boston's . The thing with specialists is...if you miss-ee...you wait-ee. To the tune of three months. And I could not wait three months. Dr. Neuro called me shortly after Nurse Sue & I disconnected. I blubbered everything. Obviously more than a little affected by the previous day's appointment. And that was when she said the words (to get the full impact I must insert that she has a distinctively adorable Hindi accent) that moved me to my core... "Listen Danielle...you & Trevy are more than just a patient to me!...

We were thrilled to host Fairfax for a short time...and continue to increase awareness about Infantile Spasms! This picture marathon is in no particular order...mostly because I'm getting awfully frustrated with the hourly shut down habit of my laptop! Ugh! Trevy & Austin & Fairfax at Boston Children's... Trevy showing Fairfax the fishies .... Fairfax joined us at our local Mickey D's family night... and we were able to share about Fairfax's journey around the world for kiddos like Trevy ... Fairfax joined Trevy for his therapy sessions... Work it out Bunny! In my departure haste I forgot to slip the bunny in my heading to DC bag... but he did proof my testimony for me! Did you hear that? That's Fairfax begging us to hurry up & send him somewhere warm already! Fairfax got lotsa lovin '... Course to Trevy nothin ' says I love you like being tossed around the room! ::wink:: And lil ' Fairfax finally got his wish to head...