happy being trevy

When I first found Seizure Tracker I thought it was an AMAZING tool... thus a post ages ago. But that was during Trevy's seizure free time. So I never had a chance to use the tool myself. And ever since Trev's seizures returned...ummmmmm... I've kinda been a seizure tracker slacker . ::smile:: Especially considering there seems to be no consistency. For instance...two days this week (including Boston day) we only saw at the most three clusters. And I'm such a sucker too. Cause my heart skipped a beat when we learned that Trevy's put on two pounds! Coming off the Zonisamide has been eye-opening on many levels. Including just how much his little appetite had been suppressed! I was beginning to doubt his smidgen of Italian! So with two extra pounds in play...and only three clusters at most...what else could we do but bump up on Vigabatrin? And then yesterday? Attack of the seizures. I kid you not...during his one hour of OT...Trev had at least five clusters....

I'm thinking about implementing a three day rule. Give myself three days to cry. Wear black. Sleep til' noon. Stay in jamies. Pity Party paloozah. Get it all out of my system... ...and then pick myself up and move on with life! And celebrate all the wonderful...beautiful...cherishable...things that I do have. Hmmmmmm... The more I mull...the more I like this three day rule thingie. Cause I totally don't feel like taking off the jamies today... ::smile::

I didn't want to include the happy in the bitter. ::smile:: It did my heart SO good to hug Jen before & after our appointments! And to meet Jeff n' Austin. I only wish we could have spent more time together...but Trevor was SO ready to get outta there! My computer has been acting funky...and shuts down whenever I try to do something fun...like up load pics. But Jen has an adorable one of our boys (and Fairfax ) here !

Yesterday's appointment was pretty much heart shattering. It felt a lot like Dr. Boston was throwing in the Trevor towel. Although I'm sure he'd be quick to deny. It is his opinion that at this point Trevor would no longer be considered IS but should be moved into the LGS category. He was basing this on Trevor's age & seizures. I showed him the video clip...which he agreed Trevy's spasms are undeniably A-symmetrical. But he also pointed out head drops...which are bi-lateral. Meaning involving both hemispheres. And that his left arm although less so...is affected as well. And while he would present it to the surgical team for me...he felt this evidence was ruling out a surgical miracle. To his credit, he did say it is imperative to get an VEEG before we completely shut the surgery door. We spoke about the Keto diet. That would be last on his very educated list. We left with broken hearts and his recommended to-do list... 24 hour in-patient video EEG. T...

** okay...copied & pasted wrong word...the correct spelling IS rendevous...obviously I really do need meds! I can't keep one thought in front of the other! ** I love using words I have to spell check. Makes me feel so smart... ::wink:: But seriously how interesting (God) is this? Jen & Austin have a spur of the moment Boston Children's visit today. Trevy's appointment for today was set months ago! Plus, Dr. Boston's office called first thing this morning to ask if we could switch to a 3pm. Which is precisely the time that Austin's appointment is! Gives me tingles. Although I'm easy like that... ...and somehow my sappy can't help thinking this randeveu was Planned for us! Wish us luck!

"The psychology department of Dayton University reports that loud talk can be ten times more distracting than the sound of a jackhammer. Loud, incessant chatter can make a listener nervous and irritable, and even start him on the road to insanity ." True-er words... ::over the shoulder:: Now pipe down you rugrats! Before mama really does go bonkers!

Monday is cake. Nuthin ' really special happens on Mondays. Mondays are good relax after the weekend kinda days. Tuesday...we road trip. It's Dr. Boston's second consult. We've learned a lot since that first meeting ages ago. Should be an interesting conversation. Wednesday...all day in Providence! Dr. Neuro appointment. Again...lots to chat about. Meeting a Craigslister so I can hopefully complete my Gilmore Girls collection! Pluuuuuuus ...after months on a waiting list Trevor is finally being accepted into a CEDDAR Center. To be honest...I'm not really sure what exactly CEDDAR does...but I know they are the only service (in RI) that offers respite. And while it took me awhile to get to the place where I felt like we actually needed respite hours...I'm SO there now! For instance...the Snow Angel Ball was this weekend. It's an annual event focused on raising funds towards epilepsy research. And someone sweetly donated tickets to Jonathan & I. I even...

The Happy Vid... I have NO clue what he was singing...but it sure was cute! Music is Trevy's passion! The Sad Vid... We wanted to capture at least one cluster to show the white coats next week. We meet with Dr. Neuro...and Dr. Neuro Boston. This cluster was actually on the milder side. We've been seeing much more violent spasms involving both arms raising over his cute little curly top. Lots of lip smacking too. Which vanished for awhile...but with the Zonisamide wean we're seeing it again? Lots to talk about next week...

Is it me? Or is he... SO cute... ...that you... ...just wanna... (fill in the blank with whatever his cute lil' face makes you just wanna...)

Like this dish found at Ethics Soup...and devoured by me with my morning cuppa. By the end of the article I was no longer in the mood for breakfast.

People are funny that way. Not knowing what to say. But saying something anyway. Sounding stupid. I know... cause I is one . Which is why I always always preface advice with... I suck at this... And then blabber something that shoulda been caught by my stupid filter before it left my mouth. I was thinking today about some well-intended things I've heard since Trevor's diagnosis last year. He looks SO normal... I know lots of kids that couldn't do xyz at that age... Oh...it's just the spasms (this by a nurse with no clue during in-take) Let's insert a little game here... You think of a Christian cliche... And I'll tell ya who said it to me! I've wondered if it's the x-missionary thing? But maybe you've heard em' all too? ::wink:: Then there was the classic emailed article about how baby-wearing cures seizure disorders! Seriously! I've heard a lot of stuff. Stuff that was said with good intentions. Stuff that slipped through stupid filter...

Today was preview day. I felt all trendy (in my dodge caravan...ha!) driving through downtown Providence in route to The Groden Center. Trevy's first school. All that was missing was a Dunkin' Latte. Jonathan says no more of those...the price of home owner-ship! ::smile:: So we (Trevy...me...and EI Kelly) arrived Latte-less...but excited. EI has been great to us. But I really believe Trevor will thrive with a more comprehensive approach. And Groden's strategy is a 3:1 ratio. Three therapists to one kiddo! Hmmmmmm... ...now if I could just convince them to implement this strategy at home. Imagine the dinners I could make! My Italian side would go wild! I thought it would just be a quickie tour. See room. See toys. Go home. I was wrong. In a good way! They actually had a little class just for Trevy. And as it turned out...that was a good idea. Cause no sooner had we plopped on the calico-rug to play with some groovy (expensive) therapy toys... than we had attack of...

It just isn't right that a drug (zonisamide) that made zilch-o difference in seizure reduction... ...could increase them during the wean! And mess with nap times too! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

Whatever you do... do not go home and google this! That's what my pediatrician said. After watching this video clip. On my digital camera. And putting a name to the jerky movements. That I did not think were seizures. Such simple words. Innocent sounding words. Words that should not be googled according to furrowed browed doctors. Words that would...in the unexpected blink of an eye...completely redirect and radically change the course of our lives. Forever. Infantile Spasms . An extremely rare catastrophic form of epilepsy. Our world was rocked to the core the day (November 16, 2007) that our 7 month old baby boy was was given a diagnosis. And of course I didn't listen to Dr. Pedi's white coated advice. I turned to the internet. And yes. Much of the information is starkly sad. But I also found stories of hope. And faith. And healing. And gut honesty. And so it was that shortly into this crazy journey...I committed to do the same. That was a little ove...

Seriously...I think we've shoveled more snow this winter than is worth the water view! Although snow lashes are awfully cute

By far the best Meal Planning website I've found yet!

Soooooo...here it is at last! The new diggs! The first floor circles around the staircase...which the kiddos LOVE running around! The Living room... Jonathan & I bought that couch as newlyweds... We stored it for two years...then shipped it to Tanzania for another two years... And now it's finally home! Building new memories! I designed our dining table. It was hand crafted at Carver's Market in Dar es Salaam TZ... By Mr. Maka...who was VERY proud of his work! And actually...so were we! In fact...we later had him build the entertainment unit in our living room! These chairs can be found everywhere in TZ! I always meant to have rockers put on the bottom of this one... ...cause it's a personal passion to have a rocking chair grace every room in the house! but Trevy doesn't seem to mind! The kitchen is small-ish...but we love it anyway! Bristel...such a ham! The 3rd bedroom is on the first floor...but functions much more practically as a play room! The only bummer is...

No doubt about. I love mommy-hood. In between the chaos...and mental neck wringing...there is A LOT of laughter. And joy. And fulfillment. In fact...their antics were the inspiration for my original "random- nings " posts! And are...in fact...the inspiration for today's! Adventures in parenting Toby... I was chatting up a friend yesterday. Our boys played ball together last year. And the topic of Spring ball came up. To which she gave me the " machine pitch head's up "... Toby... my not so little any more baby boy ...will need to wear a CUP!!!!!! A CUP!!!!! My funny bone has a mind of her own...and for some reason this thought tickled her hysterical! I just couldn't stop laughing! The thought of my Toby...needing to protect his you know whats ... Wow... Parenting Toby just entered a whole new phase! Adventures in parenting Bristel ... The Princess. By Design...and not mommy interference . Cause trust me...adding princess gear to our already overloaded wi...

So my dilemma is this... We've had some really good days on Vigabatrin. I'm talking days with as little as two clusters. 15 seizures. Days that make my heart skip a beat...like...this could be the one? This could be our miracle days. Kinda like when I scanned the insert which read if you have kidney issues you cannot take Vigabatrin. And how Trevy did have kidney issues. But how we didn't want to take him back to (the bush) Tanzania with kidney issues. So we opted for the agressive treatment. Surgical correction at six months old. Before we ever knew a lick about IS. Or AEDs. And those you can't take without perfect kidneys. And now Trevy doesn't have kidney issues any more. And one thought leads to another until I have myself convinced God knew that Trevy would need perfect lil' kidneys to trial this drug. This drug that has given us some good days. This drug that could be our miracle. Right? And then we have ear infections (or any ol' infection...

Sooooo... I feel the need to clear the air on two accounts. One... Trevy does not have Tuberous Sclorosis Complex. Several curious have googled their way here under that assumption. And I can understand why. Almost every other IS parent that courageously testified last week...has a child with TS. Who became seizure free on Vigabatrin. I felt a little like a sore thumb! ::smile:: Actually...our journey to find the underlying cause of Trev's IS has been quite the roller coaster. Including our recent 3T MRI findings...which revealed PVL . A form of brain damage that was caused either before...during...or shortly after birth. And has a strong link to CP . No professional is willing to narrow the timeline. 'Cept me if I count...who has always maintained that Trevy being a "blue" baby meant something. Those with the MDs always argue that his Apgar's were normal...and gobs of babies pop out with the cord around their neck. To which I always nod...and say Y...

A heart-felt thanks to the Epilepsy Foundation for extending an invitation my way to participate in yesterday's historic FDA hearing. And for providing me an all expense covered journey there & back. And for this article posted on your website. I'm thrilled you used the cute picture. Of me. Toby might be complaining someday!

I've stopped & started this post at least four times already. I'm very tempted to blame it on the kids. They come in quite handy for just such a purpose. But the truth is...every time I try to put words to everything that happened the past two days...I just can't seem to come up with any that make me happy. And yet I can't live with myself if I don't at least make an attempt. The Highlights Meeting Jen Smith & Mike Bartenhagen in person. The connection that IS has given us runs deep. Down into the family center depths of the heart. At least my heart. Like we've always known each other. And eating dinner til' midnight was actually fun. Attempting to be up the next morning for the 7:30 meetings...not so much! Having the opportunity to speak with Dr. Jeff Buchhalter (the pedi neuro representing the Epilepsy Foundation) on many topics. Including Trevor. Which he admitted is a difficult case...but gave me renewed passion for pursuing surgical interven...

I survived... what felt like FOREVER without the internet! ****************** We're nestling in quite nicely. The living areas are all put in proper order. The basement on the other hand... ...I wouldn't look if I were you! ******************* Just in time to pack my bags and head to DC too! Wish me luck tomorrow. I'm tempted to get sauced at the airport... Have you seen the forecast (ice n' rain) in these parts. For a freaky flyer...it's not nerve reinforcing! But I hear a nice glass of Chardonnay is! ::wink:: ****************** Trevy did the funniest thing yesterday. He closed the closet door on Toby... ...and said... Bye! I'd swear he knew what he was doing! ********************* Evidently moving inspires seizures... ...any hope we had in Vigabatrin is gone at this point. We're weaning the Zonegran. And Dr. Neuro wants to add Clonapan ********************* We had two *home owner* experiences already. 1) I came home and the furnace was off. And I couldn...

A wonderful New Year... ...filled with laughter & love & hope & growth & more peace than we imagine! Oh...and wouldn't ya know it...it snowed last night! On moving day. Again! We're looking forward to getting settled. In our nine years of marriage we've never lived in one place for longer than two years. Which was always fun. Adventurous. But I'm ready to put down roots. Nest. Be home. Wish us (fighting free) luck. I will be off-line until Cox can hook us up. Hopefully by Monday! I can make it til' Monday. Right?! ::smile::