happy being trevy

I have been pushing back the thoughts every time they try to invade. On purpose. I don't want to think about it too much. Because if I start dwelling...mulling. Inevitably that will lead to google-ing. And learning. Than I run the risk of stumbling on information better left unknown. Until it's already been Lived through. Because it might destroy the fuzzy romantic picture I hold in my heart. Which always includes a swath of missing beautiful curls. Super heros in white holding swords. Shaped like scalpels. Bright lights. Sterile room. And the monster being skillfully sliced out of his brain. Slayed at last. Freeing the little prince. Which in my fuzzy bubble...concludes with a happy (seizure free) ending. The little inverted mohawk prince wakes at his mommy's kiss. They hug & laugh & live happily ever after... And frankly...I haven't wanted to allow myself to think about it too much. Just in case... In case Dr. Rockstar says "no". In case I've l...

There is a beauty in being busy. And as exhausted as baseball season had us...there was a beauty in it. No couch potato time. No unlimited dwelling on Detroit time. But now that it's just a weekend away...we're getting jittery. Very. J.i.t.t.e.r.y. Anyway... Because I've been asked for a little more specifics. For praying purposes. Here's The Plan. Sunday... Leave RI early afternoon in route to Detroit Check into a very swanky hotel...thanks to Coach B! Monday... Trevor will be admitted & hooked up to the leads around 4pm for a 24 hour VEEG. Jonathan will spend the night with Trevy in the hospital. I can't think without my sleep. And I'll need my wits about me for our consult the following day. I keep telling the EEG techs at Hasbro that Trevy should be the hospital model! That cute face! Tuesday... Late afternoon Trevy will be unhooked. Meet with Dr. Rockstar at 4 pm-ish. We've been told to expect it to be a loooooong consult. Wednesday... Ch...

Trevy's Current Med Sched... AM 75 mgs Topiramate (mixed with applesauce & maple syrup) 1/4 tablet Banzel (mixed with applesauce & maple syrup BUT we should be Banzel free by the end of this week!) 100 mgs B-6 (crushed & mixed with applesauce & maple syrup) PM 75 mgs Topiramate (same deal as the am) 100 mgs B-6 (ditto) NEW ADDITIONs PM - 0.125 mgs (1 tablet) of Clonazpem - Despite my personal feet dragging on this one...we haven't noticed any ill effects since we introduced this newbie last week. And it's a super nice bonus that it's a yummy meltaway tablet! 2x daily - 2 teaspoons of Liquid Dualcitra added to juice 2 -3 times daily. This is to counter the acid increase side effect from Topiramate. We just had labs done last week and Trevy's CO2 levels are back in normal range! I'm SO happy... A) because the thought of Trevor going into metabolic acidosis was freaking me out B) because we have seen positives sinc...

A friend and I were recently chatting about photography. My other (than blogging) hobby. I thought what she had to say was SO beautiful. And dare I use the word...profound? Insightful. Spot on. Especially considering a comment left many moons ago...by a different friend has stuck with me. Occasionally tumbling around the place in my heart that tries to figure life out. After looking over a picture marathon...he mentioned that there was something different about how I choose to snap shot Trevy. I think she captured...and completed...that thought perfectly! I know you're dying to read what she said right? Well... if you know me at all... Copy and pasting queen am I. "I read into people's photography. I think in pictures, we photograph what we want to see, that's why I feel like you always have super close-ups of trevor. You want people to see what you see, you want them to peer into those beautiful eyes and see the life that is there and the life that has been taken aw...

Don't know what it is? Never heard of it before? Curious? I'd never heard of it either. Until an IS daddy friend emailed suggesting I look into it. He'd recently aquired their service after his own lil' Explorer escaped! What a great idea. And thanks for the tip NE!

See... this is exactly what happens when you OVER SCHEDULE yourself! You have mushy brain from all that baseball and sun. And in your mush-i-ness you forget to check your planner. Which if you had ...would have reminded you that your new Speech Therapist was coming for her first visit early Monday morning. Like still in PJs early! Nice first impression, right! Least I was wearing my cute jamies today. ::smile:: As for my impression of our new Ms. Speech... LOVED her! So many times...sharing Trevor's diagnosis and how it is/has affected him...feels like climbing Kilimanjaro. I get winded from all the repeating of medical history. And heart sick...because the body language I'm reading reveals that it's just not sinking in. And I give up cause I feel like the goal is unattainable. It takes special eyes to see past the cute. I hate that brick wall feeling. Today was different though. She asked tons of questions. Including his specific diagnosis...which was written down if I...

I've been hoping to capture a more right sided cluster. To show Dr. Rockstar. This did not end up being very right-sided...but Trevy was so extraordinarily amazing that I wanted to share it. How can he smile? And no wonder I don't much. How can he be SO sweet? He's amazing...all these little courageous kids are amazing... The video is actually in reverse order...with the cluster first. And the pre-cluster aura after. The music transition is the que. I was tempted to not include the pre-cluster video...but he was smiling and just so beautiful that I had to! The ques he gives are VERY subtle. Well...not to me. I'm really just saying that for your benefit. His little face muscles get tight. And he will start picking and becoming quiet and focused. And it's the weirdest thing...but after the cluster passes he's always starving? This cluster (1 of 6 clusters so far today) was on the milder side. Although you'll see him lose his balance a couple of times. And if ...

Oh...I'll totally be using this one again! SO many times I'm stumped. Or at least too tired to try harder. But then sometimes...a stroke of genius just sneaks up and slaps me in the noggin'. And this idea was grrrrrrrrreat! See...it's all fine n' dandy that Toby's a big-number-44-name-on-his-jersey-trophy-sportin'-All-Star . But the thing is...after every single game. Without fail. And lately even practices. He just has the worst attitude ever! Snappin' at his sister. Growling at me. Throwing things. Stomping. Slamming. Snarling. It's like an 8 year old temper tantrum or something? I'm thinkin' maybe next game to sit near the other 8U mommies and chat it up. Maybe it's just a boy thing? Misplaced adrenaline? Too much sun? Or whatnot? The thing is... ...it's just not cute. And I'm not going to put up with it. I'd already drawn that conclusion. Way before we ever set about adding babies to the family! I want a home filled up wit...

Cause it'll be all baseball all the time this weekend. Seriously! Not a bloggy moment to spare. Grams is due to arrive 8am- ish (Thank God for Grams'!) to watch the lil ' ones. I told Jonathan last night...it'll be like a date! I'm easy to please...Little League games are right down my alley! But can you really blame me? All the cute boys... Anyway ... Dr. Neuro emailed to say Trevy's co2 levels are back in the normal range ! Yippee! I am just SO SO SO happy to hear that! I've been fretting. I did not want to pull the Topomax plug...for the first time in a long time we're in a good place. Seizure wise. Which also struck me today. How somewhere over this past year I changed from chasing Seizure Freedom...to being okay with Seizure Relief. There was a time when I wouldn't be content with less seizures. Had to be all or nothing. And now here I am all happy that I don't have to axe Topomax ...cause it's giving us less seizures. Spe...

Cause I'm not really sure. Even writing this post has been tricky. And listen...I can flip a phrase or two. But this one is tough. I mean...when you get an email like this... Hi Danielle, I hope all is well… yes I read your blog from time to time and I am sorry for being such a pain about letting Toby play all-stars. As you see he fits right in there and is one of the stronger players on the team. In my job as Northeast Regional Sales Director(You have to love titles) I travel frequently to many places all over the world and I am truly blessed to get to see some wonderful places. Through my travels I accumulate many frequent flyer miles and many times they go UNUSED! I would really like it if you would let me use them to help out with Trevor and getting you to Detroit. Please accept my offer and let me know how many tickets you need and the exact dates and times you prefer. We’ll see if we can get them for you. I have TONS of miles so I would be very happy to have them used in a ...

Bristel was perched on the couch...looking out our big window... and suddenly started yelling... Mommy...a daddy robber's coming! A daddy robber's coming! Took a minute to figure out she meant a daddy "robin"! As in the bird. And not the guy trying to steal our Samsung. ********** Toby's AllStar team were the champions of their first tournament! And word on the street is...it's the first time our town's AllStar team (of any age) has ever won a tourney! First inning warm ups Captain Slugger took one to the face. Rewarded with a bloody and broken nose to compliment his trophy! Ahhhhhh...the memories of boyhood. We'll laugh about this someday...right?! **************** Quite possibly the best compliment I've gotten. Ever. " I have a crapload of respect for you!" Taken from a recent email...that made me smile. ********** The Scene: Toby walks into the living room while I'm sweatin' to my morning workout. Panting Me: Wanna join? Gaw...

**editor's note: the punchline will most likely be best understood by girls. And of those girls...the ones who've been there done that ** Med Time is becoming increasingly traumatic. I'm not sure exactly when it changed (again...we've had bad med routines before) in the past months. Maybe it's the Topomax lifting some of the seizure fog? Revealing Opinionated Trevy. Who is great fun. 'Cept at Med Time. Which is NOT fun. Ever. In fact, lately as soon he gets wind of in-coming meds - loud protesting and running away ensues. I've been meaning to take a video clip. Hard to manage, though. When it takes one parent to force feed. The other to play straight jacket the toddler . Hard to manage indeed. But possibly great You-Tube fodder!? Anyway... This morning Trevy figures out how to just hold the spoonful of AED cocktail in his mouth. Without swallowing. And slowly drooling maple syrup dotted with Topomax sprinkles out the corners of his mouth. ...

Okay...so this post will be a bit ranty. Sorry. Just the way it is. So with all the SouthWest ads on tv you'd think we could book a cheaper flight from here to Detroit. Evidently...Detroit isn't a happening place. The cheaper tix will run us around $350 per person. That's with a two hour layover somewhere. Extending our travel time. Which isn't fun solo...and I don't anticipate it being more fun with a toddler. Who is really a baby. Cognitively speaking. Wish the airlines could nix his ticket with that in mind. Not that I've called and asked yet. It's just...ya know...doubt it. We can get a direct flight. Two hours from here to there. Straight up! But it'll cost nearly $500 per person. I know... I know... I was all big talk about making payments for his brain surgery...if came to that. But it just sucks that the cost of travel rivals that of an over-nighter inpatient. Sooooooo...I thought I'd send an email out the the Epilepsy Foundation. I mean...th...

We SO did not know what we were in for when we signed Captain Slugger (aka Toby) up for baseball this year. No longer was it the lazy parent Saturday routine. No Sir-ee! It was a 3 game a week-er deal! Plus practices! And it was NOT easy! I mean...I'm sure that's a hefty load for any parent. But seriously...with a Seizure Boy in the mix...I think I have whiners rights! But then I look at him. My big boy. So cute in his uniform that I just wanna run on the field to pinch his boot. Or give him a smoochie. Or stay glued to the dugout so we can cuddle against his will. And embarrass the heck outta him. In those moments. The cute moments. It feels a little bit easier. Worth it. Now that we've entered the Little League three games a week phase of life...it's different. Balancing everything I mean. Seizures have a way of always tipping the balance scale. Just when you feel like you've found your footing. Blam! Something shifts. And somehow it always seems to tip in th...