happy being trevy

Trevy's current med sched... AM 150 mgs (3/4 tab) of Banzel - given at breakfast crushed and given in yogurt or oatmeal 100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup 1 Omega 3-6-9 - we're still expeirementing with the best method for force feeding. So far we've tried just squirting the oils into his mouth. He kinda hated that! Mixing it with yogurt. Worked for a day. Mixing with cream cheese. He LOVED that...but then I ran out & haven't made it to the market yet! And mixing with apple juice...and letting him straw suck it. This has been working well. He likes the straw factor. PM 200 mgs (1 tab) of Banzel - given with dinner crushed and mixed with yogurt or chocolate pudding 25 mgs (sprinkle tab) of Topomax - given with dinner sprinkled in yogurt or chocolate pudding 100 mgs (1 tab) of B-6 - crushed and syringed with maple How I'm feeling about... Seizures... Grrrrrrrrrrrrrrrrrrrrrr... Trevor has at least 100 seizures a day. Spread between at ...

I applied for respite several months ago... and after working through the multi-layered approval process... we've finally found an agency...and a CNA...that are a good fit for our needs. I really had two main goals... The first being... to sit through a whole church service. As opposed to chasing Trevy round & round the mulberry bush. He's just too immature to sit through any class right now. And Sundays were actually torture for me... between all the rescueing from staircases and such... and seizures. Gobs n' gobs of seizures. It was SO fun watching Miss. CNA do the chasing last Sunday! I still handle the seizures... But I also wanted... to have an opportunity to spend alone time with the rest of the fam. Especially...Toby & Bristel. I feel guilty sometimes. That they're missing mommy. Cause Trevy needs SO much of me. And what's leftover is either exhausted...sad...or cranky! Not that they've even really complained. ...

Yesterday's Inbox... Hello, Sorry it took me a while to get back to you, but I wanted to make sure I did a thorough search for the records before replying. I have not found the package sent by Dr. Neuro's office. If they can fax it to Dr. RockStar's attention that would be great or resend by mail. Thank you, Ms. Nurse Yesterday's Outbox... Thank you for letting me know! And trust me...the problem is SO not coming from your end! But I've just emailed Trevor's neuro and fully trust she will get this resolved ASAP. ...danielle ::druuuuuuuuuuuum roooooooooooooll:: Today's Inbox... Hello, We have received the records, and I will give them to Dr. RockStar for review. Thanks, Ms. Nurse

Ummmmm... in case you were wondering... or somehow happened to miss it... you have a SEIZURE DISORDER ! Gobs of unexpected SEIZURES daily! So for goodness sakes STOP WITH THE CLIMBING ON THE DINING ROOM TABLE !!!!!! Or at the very least...for the sake of your mommy's already prematurely age-ing face... stop the free jumping from the top of said table in attempt of grabbing the ceiling fan cord!

Trevy's current med sched... AM 150 mgs (3/4 tab) of Banzel - given at breakfast crushed and syringed with juice 100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup New AM addition 1 Omega 3-6-9 - we puncture the tip and squeeze the oils into vanilla yogurt. Our tabs are lemon flavored which when mixed with the yogurt is quite yummy! PM 150 mgs (3/4 tab) of Banzel - given after dinner crushed and syringed with juice 100 mgs (1 tab) of B-6 - crushed and syringed with maple syrup 15 mgs (sprinkle tab) Topomax - mixed with chocolate pudding or whatever other soft foods we're eating with dinner Effects we're noticing with... Banzel... VERY floppy for 2-3 days after each increase. MORE clusters with varying degrees of intensity for 2-3 days after each increase Stronger (although possibly less frequent? Then again if you have to say possibly...) clusters. We're now seeing him fall down with a cluster at least once each day. Although to the best of my knowledge t...

A friend FaceBooked me recently... "You definitely have something great around the corner, I can almost feel it"... she said... Feeling a little less Fortune Cookie...a little more Eyore... I rolled my eyes & sighed... If I were a stuffed donkey I'm sure my ears & tail would have been drooping too... And went to answer the just rung door bell... Where I found a care-package on the stoop! Filled with O's fan treasures... and little princess delights too! Sent by another IS mommy friend... and making my other Fortune Cookie friend look super duper smart! ::wink:: And even though it's been an Eyore kinda streak lately... I'm SO thankful for all my Fortune Cookie friends that shower me with love via emails...comments...phone calls...prayers...care packages! And help chase the gloomies away when I feel like I can't!

April 21st is 50 cent iced coffee day!

I had a call last week from a friend. And fellow IS mommy. I was pretty much freaking out! She's local...and a year further into crazy insane IS-ville than I. And had called to see how things were going. Like I said...I've had better days... Not recently... ...but still. I said out loud for the first time... ...that in SO many ways Trevor's relapse was like the beginning of this nightmare reality...all over again. Cause let's be real...after EIGHT months seizure free...you start to think that nagging nausea in your core. That feeling of the breath of the beast on your back. Well...you start to think maybe it's all just in your crazy head. And every now & then you even start allowing yourself to entertain the thought that your kid might be one. A miracle . BOOM! The world crashes on your head. And shatters your heart. Again. Only this time...it's real. Much more real than the first time. For us. The first time our hearts were too numb with shock. And before ...

Toby: Mom...what's a sweet tooth? Me: It just means you really like to eat sweets... ::wheels spinning pause:: Toby: Well, I don't have a sweet tooth. But I sure do have a "meat" tooth! ************** Bristel would like to know if your... yester-night was pink-a-lish? ********* The Scene: (If you're not an Amazing Race fan this'll fly right over) So Bri likes to hang with me while I get dressed. And...there I stood...in all my matching "skippies" glory. When she exclaims... Oh mommy...you should be on the Amazing Race ! **************** Thank you Octo-mom for the following teachable moment whilst running errands... Bristel: I wanna get married and have lots of kids Toby: (in an I'm 8 therefore I know everything voice) You don't have to be married to have kids! Bristel: (with a gasp) YES YOU DO! Toby: Well that mom with eight babies on tv isn't! What was my response you ask? What nugget of parenting wisdom do I have to share?...

For those who haven't heard... Melanie...over at Better Than Normal ...is hosting a fab-o give-away! So hop on over...and join the fun!

I made a crisis call to Dr. Neuro today. Lots of seizure drama. Don't ask. Anyway...she happened to mention that she'd sent the package to Dr. Rockstar. Sometime last week. So when I got home I emailed him this... Dr. Rockstar... Evidently there was a miscommunication... I asked Trevor's neurologist to email you the PET scan. She instead send a cd/package...sometime last week. We're in week three of Banzel...and if it's making any difference at all I'd say his seizures are worse. We're still at a low dose...but it's hard to imagine it'll get better. It would mean the world if you could look at his PET. Our local neuro says the abnormalities...while unimpressive to her...are limited to his left hemi. ...danielle Literally minutes later he responded me this... I have not seen the CD. Nurse: could you track it down? And I have to say. It's this weird sense of comfort. Fear. Hope. Angst. Emotion explosion all tingling through me. An...

Two websites I'd encourage you to check out... First up... TherExtras A wealth of information for mommies & daddies hungry to learn how to proactively care for their children! Beware though...you may be lost for hours to the detriment of your home (my children's ability to trash the house behind me as case n' point) exploring the various links! And on a personal note...Barbara...I'm not sure how or when you stumbled across my little piece of cyber space. But from the deepest part of my heart...I am so happy you did! So a big fat thank you! And if you're ever in coastal New England...I hear there's a cute little family that would love to give you a squeeze! Next up... EpliepsyMoms.com How am I just today finding this site???? With the free registration comes the founder's down-loadable 6 Critical Facts Moms Need to Know When Dealing With a Child With Epilepsy...But Don't! It's a really good read! I'm excited to explore more of the site. Afte...

Sooooooo... All that Topomax drama was compounded because I had to run Trevy to the hospital for a follow-up ultrasound. Many moons before IS...Trevy was diagnosed with grade IV kidney reflux . Which we were encouraged to (and did) surgically correct (when he was just six months old) pre-return to The Bush. Tanzania. Not knowing that just a month & a half later seizures would turn that idea on it's head. We still have annual ultrasounds to make sure his kidneys are growing correctly. Yada yada. It used to be SUCH a big deal to me. Today I'm much more concerned with how his BRAIN is growing! Anyway... I was already frazzled...and just didn't have time or energy to deal with the added stress of working through all the prescription drama. Buuuuuut... Since I very publicly ranted. I feel inclined to publicly share the rest of the story. Because after all the initial miscommunication...the pharmacist (without sarcasm intonations or devil's red coloring) ...my...

Seriously... Sometimes I wish drugs were as easy to come by here as they were in Tanzania. There you just walk into a Chemist...tell em' what you want. And bango. You leave with the stuff. Here on the other hand... I feel like I'm constantly banging my head against a wall. Made of pharmacist . (every time you read the word pharmacist ...appropriately colored Devil's red...please mentally add a dripping with sarcasm intonation for the full effect!) Like the convo I just had regarding Trevor's Topomax. Much similar to previous convos I had regarding ACTH...Zonegran...Banzel...yada yada... I was really hoping to start tonight cause we're awfully low on Vigabatrin. But the pharmacist ...all knowing that she is...won't fill the script without clarifying Dr. Neuro's orders. Which are to split a 25 mg sprinkle capsule in half. For starters. And slowly titer up. The pharmacist says it's impossible. I'm like... lady...when your kid's having...

I kissed my big boys good-bye at the crack of dawn. They looked so cute sporting their O's gear. Jonathan's a fanatic. We've chatted on the phone several times already. Obviously we're the clingy type. ::smile:: Jonathan said when the stewardess came for drink orders Toby requested... Coke... the Classic kind, please! Which got a chuckle from the drink lady. Last we spoke...they had landed safely in Kansas City, MO. And were waiting for their ride. Jonathan's oldest younger brother. He mentioned this morning that the last time the whole family was together was for B's wedding. And that was in Tanzania. Before seizures. And cancer. Sadly...Jonathan's dad is in the ER right now. He hasn't been eating. Or drinking. And has pains in his chest. Which the doctors told them could mean more clots. Of course I'm wondering if it was a mistake letting Toby go. It's a nasty day here. Chilly. Rainy. I had my cell to my ear. Jonathan on the other end. Both of...

The following email dialogue I'm about to share is intensely personal. For me. Tears streamed while I composed. Because my heart is deeply deeply involved. I'm not sure that my heart is even completely comfortable with being so open. And yet every time I've swallowed the knot and been gut-wrenchingly honest. It seems I'll find an email from someone who was moved. Usually that's someone who also loves a child with IS. The passion that stirs my soul crazy for rescuing Trevor. Also burns in my heart for other families living the crazy IS life. It's all a giant learning curve you know. I never expected to sit here. Debating with doctors. Insurance companies. Making impossible treatment choices. Fighting for my son. And it sucks sometimes. Many times. And it takes tremendous courage. I used to down-play it. Like somehow it wasn't unusual. Important. Brave. But it is. And it's so incredibly hard. On the heart. Mind. Emotions. But it...

So we're in week two of Banzel. Current dose is... 100mgs AM & PM We just upped this morning actually. The only negative side effect that we're seeing so far is excessive wobbliness. I was beginning to wonder if it's in my head. Heads are tricky like that. At least mine is. But Trevy's teachers mentioned concern about his balance today at school. He was clumsy-er than normal. He's not the smoothest kiddo around anyway. But it seems that the new drug is messing with his equilibrium. I hope it's a passing thing... Still seeing gobs of seizures. Nasty nasty seizures. Stupid seizures. I said it out loud the other day... Stupid seizures! To which Toby responded... Mom...do you really think it's appropriate to say "stupid"? Eight year olds! As appropriate as you feeling comfortable correcting me while your head is buried in your GameBoy... I barked back. He agreed that I made a good point. While never lifting his eyes from his little s...

I've been waiting... somewhat patiently ...for Trevy's Dr. Neuro. The same Dr. Neuro that we're over the moon for. To send Trevor's PET scan results to Dr. RockStar. In Detroit. I've been emailed that it will happen. We spoke face to face. And was told it was happening. Went home from the hosptial. A bit destroyed by the EEG news. It's a mess. But optimistic for Dr. RockStar's eyes to check out the scan. It's been a looooong day. Dentist in the am. Easter Bunny (what was I thinking) in the afternoon-m. And 2 hours of baseball practice in the pm. Lookin' forward to freezing my bloomin' tushie off! Makes me feel SO Americana... Somewhere in between the Dentist & the Easter Bunny...Dr. Neuro left a message. Which basically informed me that she was working on sending a package to Dr. RockStar. Soon! But after reviewing the PET again...the left sided abnormalities were unimpressive . Which I'm fine with. Honest. Just send th...

We've had our times. Ya know. Like every good couple But today???? I'm thinking that maybe...possibly...he mighta sorta... "accidentally"... ::wink wink:: tried to KILL me! It all started with the sweeter than normal... "The ovens all clean for you, Babe" as he headed out the door this morning for work. I shoulda known. I mean whose hubby of over 9 years is that sweet. But clueless me instead set about making a super yummy dinner. In my super sparkly oven. We were having Mex-alish. As Bristel would say. She makes up funny words all the time! Like the other day...she came up with "yester-night"! Cute...right?! ::chuckle & sigh:: She's SO funny! Gets that from me... Aaaaaaanyway... I had the pan in the oven ready to go. And as soon as he called to say he was headed home I flipped the switch to bake. Approximately 10 minutes later is when I started to notice something strange. Smelly strange. So of course I went to check the Mex-alish dish. T...