happy being trevy

As I was re-working (editor's note: sometimes I despise blogger!) the first post of the day... I was also sipping my 2 nd cuppa joe ...cleaning Trevy scrambled raw eggs from the kitchen floor...and IMing another IS mommy. I'm SO sorry Amy...if I seemed to be moving slow! I used to be an excellent multi- tasker ...but these days I have Foggy Brain. My java was in no particular hurry to hack into my sluggish- ness ...but I found myself able to chat AND edit AND...check out a beautiful website too! Nathaniel's Hope is without a doubt the most beautiful... inspirational ...example I have seen of a family offering Hope to other's through their own heartbreak! And the irony did not escape me. Right on the heels of a post (see the post below) calling all IS parents to rally together in support of a common goal... I find myself eyeball to eyeball with an extraordinary example of what hearts motivated by Hope & Support & Comm Unity ... ...can accomplish!

Is how I felt while sipping my morning coffee and digesting the below statistics put together compellingly by Marissa's Dad & re-posted by request from Marissa's Bunny . He calculates... • There are approximately 305,297,000 people in the USA •14.02 children are born (and survive three months) per 1000 people in the USA every year. = 4,280,000 babies will be born and survive to three months old Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher. So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate: • 856 kids a year are diagnosed with infantile spasms. Infantile spasms resolves itself into something else at approximately 2 and a ...

Posted by another IS parent on my yahoo support group was a simply lovely story of a family who turned their Special Needs sadness into something beautiful... ...for parents everywhere! As a mommy of children both special needs and typical...who struggles with the meds on a daily basis these days...I'm saying thanks! Thank you to the Kramm Fam for turning your struggle into a wonderful tool to help parents...like me...living in the land of yucky-but-necessary meds! Hmmmm...here's hoping I'll no longer have to head-lock Trevy for his B-6 ....

A list of random things that made me smile this weekend... The unadulterated glee in J's voice. He was quite pleased with his 1/2 priced meat bargain find. I've delegated BJ's runs to him. My freezer hates me for it! ::smile:: Bristel's made-up words like - pink-a-lish The way Toby practices his spelling list! Hopping around the room like a baby kangaroo. It's annoyingly cute! These shoes! I've been waiting months for the air to turn crisp...so I could sport them in style! Naps. Wait. Shhhhh.... Do you hear that? Me neither...isn't silence fabulous! The Yummy vs. Slummy Mommy debate ! Grams. And her Sunday afternoon babysitting so J & I can go window shopping for our we-may-be-placing-a-bid-on-it-this-week house! Two consequetive ACTH-injection free days! Glimpses of Happy-Trevy again! We've missed him! Seeing an older couple holding hands at the mall. And having J reach over for mine...becau...

I've... on occasion ...struggled with resentment. Or at least exasperation. It mostly hits me when I've found myself wishing a particular person got what I'm dealing with. The fears. The worries. The sadness. The guilt. Even the joys...that I take for granted less often now. People just don't seem to understand that Trevy is more than meets the eye . More than cute deep. If more than a cursory glance is given...it's obvious. And I've found myself fuming more than once in moments of frustration. Which is precisely why this has been haunting me for days...

If Trevy's not swinging from my leg fussing... it's definately not the time to relax! My home has been treated to a good stiff vacuuming twice today. Once the victim was Goldfish. Rainbow colored. The second...pretzel stix. Neither of which clean up easy! Although I've discovered seven year old...nor 17 month old boys are not opposed to munching floor smothered snacks ! ::smile & sigh::

So it begins. The first injection free morning in two weeks. And more seizures than I can remember. We've averaging 5 clusters...or 40 seizures...a day. Last time we weaned my stomach was in knots. Every little odd movement had me scooping my heart up from the floor. Where it lay a quivering blob of worry. Wrapped with a bow in fear & trembling. I don't think acceptance had yet taken hold. The worry (fear & trembling too) lessened to a dull ache over time. Although it never really went away. At one time I emailed a couple other moms whose children were on a similar IS path. I asked them if they felt as guilty as I did. It's bizarre. The way emotions assualt. On the one hand I was over the moon that Trevor was SF. On the other...I had this shadow of guilt. Knowing that so many other babies were still suffering. For me...that's the most maddening part of this disease. There are no answers. No directions. Nothing makes sense. Everything is muddled. Even the answe...

"Passion makes you crazy! But is there any other way to live?!" -- my newest fave quote...found hiding at the end of an email...from an amazing friend !

Babu (otherwise known as J's dad) is visiting all the way from Tanzania. And since there are no distinct seasons there...and since we have three (hyper) active grand kids AND seasons here...we decided to celebrate with a trip to the corn maze. I relented with the house arrest...so we could all bond in the labyrinth of green stalk-y- ness . I've been very strict with the ACTH home-bound mantra...but I figured it was in the fresh air so not too germy ? Yep...I'm fairly certain Trevor single- handedly broke every one of those rules. okay so maybe not the smoking...but definitely the running...totally the throwing of the corn...the yelling... ::smile:: That smile. On that baby right up there. The pure joy. The unmistakable where has this been all my life ! Made it SO worth the potential germ exposure! Bristel grabbed my hand & held on tight...announcing that corn mazes are creepy ! Look Bibi...there's Babu ! We hugged & kissed Babu good-bye tonight. He...

As I was attempting to pull Bristel's hair up into two cutsie ponytails this morning... I noticed something was slightly off. It was like...like...someone had cut her hair or something? And I mumbled as much out loud. To which she replied with a grin... I did it Mama! ::giggle:: I snapped it with my school scissors ! ::waving rock paper SCISSOR fingers in front of my nose::

Because not everyone who follow's Trevor's Blog has a child with Infantile Spasms ...and because a friend recently inquired... I thought for educational purposes it could be interesting for the public at large to see what exactly I'm speaking of when I rage on about Trevy's ACTH. During round one of ACTH the vials were shipped in padded envelopes...and we actually had to hunt down a medical supply store to find the syringes/needles/alcohol swabs/and all things injection related. It was quite a complicated (stressful) process. Compounding the stress our insurance would only agree to ship one vial at a time. Which led to the inevitable outcome of PharmaCare forgetting to process an order on the right day of the AIG set timeline. Fortunately I called immediately upon non-delivery & we were able to sign for the vial in the nick of time for his next scheduled injection. Although the case could be made that when one (or insurance) is spending $30,000 per vial ...they...

bring on the enemies! This *sin in a jar* (as nicked by the visiting Babu) was unexpectedly found on my door stoop... sent just for me by an amazing mom ...and friend! Who also happens to be a mad custom cake maker ! Love you Sharon!

I couldn't resist adding this and that post from a fellow IS mommy/friend's site to wrap up the day's thoughts. I've always heard that word pictures are the best way to communicate... Shanna...you proved it!

My mornings these days are blended with seizures...seizure meds...a grumpy-clingy baby...two big kids who also need tending...hubby that needs smooching on his way out the door...and all the other fun-stuff that assaults house-managers across the globe. And in my crack of dawn frenzy I neglected to add that two other bloggers were given the nod in Ms. White's post. Jen ...another IS mom. Passionate advocate. Friend. And yes ...random provider of links. and... Lisa ...whom Ms. White assumed to be an IS mom. She is not. Although she is also a victim of Questcor's greed. ACTH once used in treatment of MS is now priced out of her reach. When we met at the JEC hearing I asked - Do you not use ACTH by choice or because of price? Lisa answered - Because of price. I moderate too. And have chosen to re-post Lisa's comment below...because it deserves to be noticed: "Yeah, I saw that same post by noticing a couple of visitors from her site. I tried leaving some comment...

You never know who's lurking. I stumbled onto this post last night. My response fluctuated between flattered & irked. Flattered that the author feels I've done a good job using the tools available to a mommy in this Questcor issue. Irked to be labeled... "They could have shown kindness - if not to the community, than at least greased this squeaky wheel ." Seriously? Squeaky wheel ? I like to imagine I'm more of a raging mother bear....or a roaring lion-ess...a Sarah Palin... Or... perhaps not as sexy ...but what about the thought of a mother holding a sick baby...demanding the only humane answer - immediate (not delayed until insurance approval) affordable (not to be mistaken as free) access to the medication that could provide her baby a miracle. But alas in the eyes of profiteers I'm more squeaky wheel... not so much the sexy. More a pest...not so much a parent with a point. More a PR mistake...less a heart-prick that something about this is just n...

The beach has always been a quick cure for the crankies...which we have plenty of these days... Bristel is such a poser ! but when you're this cute I suppose it's okay to flaunt it? I am SO lovin' the monkey leash! The Amazing Seaweed Girl! she's cute AND edible! Right Trevy? When all was said and done... the beach was definately what we needed... for a cranky break!

The scene: I walk into the dining room & find Bristel surrounded by (empty!) specimen containers. Me : Bri-bee whaddya doing? Bristel : Building Cinderella's Castle! Okay...so you know you have a sick kid...on a dangerous med...when you have enough poopy-collectors around for your daughter to build a fairly decent replica of Cinderella's Castle with them! ::laugh::

The scene: In the living room...on my knees trying to scoopy-poopy into a little specimen container to be labbed for blood. Just one of the many potential side effects of ACTH. Bristel dances into the room mid-scoopage. Bristel : What are doing mommy? me : Ummmm... (realization dawns before I have a chance to answer) Bristel : Ooooooh my!

I'm happy to report...so far today has been a better day. Trevor only woke three times last night...which is closer to normal. And he's been in a happy mood. We were even able to get a good Blood Pressure...with minimal fussies. I can finally breath again now that we gave him his first dose of Zonegran. I always hold my breath until the first dose of anything goes in...I'm crazy like that. ::smile:: My sappy just swallowed me up yesterday. I'm reminded of quote from my college days: Great expectations...lead to great disappointments Subconsciously I expected that Trevor would respond more quickly this time. He didn't. I expected that the spasms would mild-up immediately...like last time. They haven't. Although it's more of a mix. Some are milder. Some are very noticeable. But we did end the day with at least 30. I expected my heart to be stronger this time. It isn't. And all of my expectations culminated in a very melancholy day. But ...

Trevy is really really strong. And puts up a mean fight. So we use a little trick the nurses taught us. We criss -cross his arms over his chest...and swaddle him up in a big blue blankie . I then lay on top of his torso making sure his very grabby hands are locked under the my tummy pressure. This allows freedom for both of my hands to pin down his legs. Wrapping my palms right around his knees works best. And then Jonathan quickly does the jab job. He's getting really good at it too! I know it sounds barbaric. Everything about this is barbaric! And to alleviate the stress...as soon as the shot is over & the band aid is applied...I pick Trevy up & we proceed to beat up the blankie ! We kick it. Punch it. Throw it around the house. The whole while saying - Bad Blankie ! Like a charm the tears have been replaced with some smiles! Trevy likes to play rough! And mommy feels better taking out the stress on the blue blankie !

Isn't it crazy that the same child... can take the same drug... for the same thing... and somehow not come up with the same results? I tried not to let my heart get the best of me. I tried not to imagine how things would work this time around. Because as much as I like to know ...I knew better than to start guessing. I'm way smarter than that. And yet somehow I couldn't help myself. I allowed myself to play with the idea that we caught it early...and to remember that Trevy responded so quickly last time... And I just couldn't help it... I allowed my heart to hope...to dream...to embrace...the idea that this time it would work for good! Faster even! And that would explain why I'm being swallowed up by melancholy. Not only is Trevor miserable. Inconsolable. Not only do we have to pin him down for 5 weeks of morning sticks. Not only are we living with the perpetual pit in our stomaches. A thousand not onlys... have led to a different outcome. On day four o...

One of the side effects of ACTH is extreme hunger. I don't think I've heard of even one child who has escaped this one... Trevor...is already feeling the pangs. And was on an all day mission of grabbing anything edible within reach... including Bristel's sippy cup. Bristel is not inclined to share...and snatched it back quickly. Now typically Trevy would fuss for a sec...and then move on to something else. He's better at the sharing than she. But today was different. Today was ACTH day. And so there he stood...24 lbs of steroid fury...sucked in a big breath...and proceeded to howl at the top of his lungs like a mini-S asquatch ! again & again & again & again... I'm not sure laughing was such a good idea. But the rest of us did anyway...

We survived. Not without tears. Mostly mine. I held up fine until it was over. But no sooner did J withdraw the needle than my emotions leapt up & ambushed me...and I bawled my bloody eyes out...scooped Trevy up & squeezed tight. It's quite possible my hug hurt more than the jab?! Trevy had no tears...just plenty of mad. Boy was he mad! The wrath of a 17 month old! He got over it WAY before me though! I'm tempted to not say this out loud. And yet somehow I need to. I need to in case there's another mommy struggling with the same thing. Or maybe it's purely selfish and I just need to for me? Because confession always makes me feel better in the soul. At any rate...after a cluster of 40 back-to-back spasms (that we saw) in the hospital...I stopped counting. I just couldn't bring myself sit & stare & tally. Tally how many times his little developing brain was being shocked. And wondering what that was doing...or damaging? I have a weak stomache. But...

Shortly after 11 am yesterday I signed the electronic notebook for the first installment of Trevor's ACTH. I hate when they won't ship the whole course together. I thought our insurance company was just stingy last time. Evidently Medicaid isn't willing to ship $150,000 all at once either. But I'm sure it really has nothing to do with the price tag... And I suppose I should be thankful that the delay was only four days from submission of need...to standing over our baby with a gleaming syringe. But somehow it has felt longer than last time. Just as stressful. Just as scarey. Just as sad. And I still hate having to live today. But I hate his spasms more . And so J & I will take a deep breath...and inject our son with a cocktail of Hope & Nasty. Again.

Mr. Bailey, I did receive your recent email with the offer to speak about our journey since Trevor's diagnosis. I chose to take some time to think it over & to seek counsel from trusted friends. The feedback was mixed...as were my emotions. And in the end I never arrived at a peace point in my core. I did not mean to leave my answer hanging. I just wasn't ready to move forward one way or the other. But during these ensuing weeks a conclusion has been drawn for me. We had been seeing some questionable movements from Trevor. So mild even the doctors were not convinced. But I have learned to trust my instinct...and pushed for testing. I spent every moment of this past week hoping with each beat of my heart that this time my instinct was wrong. That Trevor's Spasms had not returned. But...as I know you are already aware...a VEEG confirmed our worst nightmare. For the second time in his 17 months of life we are holding our broken baby boy. With shattered hearts. And unrestra...

Trevor didn't really do too badly on ACTH last time. He was ravenous. Grumpy...but manage ably so. Really...the worst side effect he experienced was high blood pressure. It was elevated enough that he had to take Enalipril for the duration of his treatment. Anticipating the same this time...I've been hunting down an at home BP unit. Which any CVS carries. Except the pedi kind... of course . And our insurance...ironically will cover home nurses up the wah-zoo...but not a BP unit. Seriously! Thanks to another IS mommy I found a little company in Minnesota. Which... as coincidence would have it ...happens to be the State that Senator Klobuchar hails from. You remember her right? She chaired the JEC hearing I recently testified before! But back to the business at hand... I found this company: Pediatric Home Services 2800 Cleveland Ave. N Roseville, MN 55113 So I called. Not expecting much honestly. I've had one too many frustrating medical conversations to think it would be a b...

It almost feels like a dream or something. Something that I can't quite describe. Jonathan says...it's easier for your heart to die the second time around. I just feel numb. Detached even. In the moment anyway. Earlier at Dr. Pedi's office I cried. So did she. I guess it must be hard on the heart to watch a mommy trying to come to terms with life. With unexpected sadness. Honestly...after 8 months...we were really starting to believe this might be behind us. The IS anyway. We always knew we'd probably be dealing with other seizures...given Trevy's consistently abnormal EEGs. We just didn't expect this. My heart certainly wasn't prepared. And I was hoping to God that I was just a loon. I'd much rather be a loon. Trevor's spasms are still mild. Although more frequent. He's having clusters of as many as 35 back to back seizures. I know this might sound crazy...but he knows . He knows when he's about to have a cluster. I know he knows ...becau...

I want to thank all from the IS group who have been an encouragement to my daughter. As the Grandma of Trevy, I have felt so helpless and a lot of times am at a loss for words. The only thing left often is to pray for my precious grandson, daughter and family. The Lord has been so faithful in using each of you to offer encouragement and hope. Thank you from the bottom of my heart. You have been a tremendous blessing to all of us. Love from Trevy's "Grams"

That's the thing with Teaching Hospitals you know... they come equipped with teach-ees. Today...we had a newbie doc (the where's the nearest exit eyes gave her away) doing rounds with an Observer. Capitalized for emphasis. Trevy was sleeping so they whisked me off to a conference room to take his history. Which I'm quite certain I can be heard dream reciting. She was VERY nervous...but did a good job overall. Especially when factoring in my tendency to scare people with my intensity. It's the Michelle Obama factor. ::grin:: Here's a snippet of our conversation that I just couldn't resist sharing... She: Any complications at birth? Me: The cord was around his neck...and he was blue...but started breathing on his own rather quickly. She: The cord was around his neck? Me: Mmmmm hmmmm She: Do you know how many times? ::pregnant pause:: Me : Ummm...not really...I was at the other end! Observer: Doubled over at my clever wit