happy being trevy

He's been awfully cranky. But he's also cutting teeth. Two at a time is his pattern. I figured that explained the grumpy. But it seemed like the cranky- ness continued coming up a notch. A little worse every day! Until I finally noticed why. Dr. ENT had warned me. But still... it's nasty! Trevy has an ear infection...again! That's 12 since November. Although...it's the 1st since his tubes. Those very tubes allow the yucky to drain out for all the world to see. We're talking Go Tell Aunt Rhoady Groady ! Brown slime spilling out the ear groady ! But it's nothing a round of anti- biotics can't fix! And our early morning walk in with Dr. Pedi was VERY valuable. After reading Trevy's BEAM report she wants him to start receiving more services from Early Intervention. Just when I had started giving up on trying to bridge the gap between Trev's cute & the reality of his challenges too! More on that later though... Tonight...I'v...

"My hope for each of you is that you find your place in the world, because it is waiting for you to find it. May you discover your place, and do what is good and honorable and just, and be battered but not broken. May you know and be known. May you find grace when you need it most, and reject bitterness when it is most tempting. Most of all, at the end of your journey, may you find peace." -- Tony Woodlief --

I get it. Why it's hard for some people to wrap their minds around Trevor's IS diagnosis & our obsession with what the future holds for him. I mean, look at him. SO beautiful. Healthy. So NOT sick. On the cover anyway. And really he isn't. Entirely. I get that too. But Trevor is more than meets the eye. He is an IS baby. Just a few months ago his baby body was wracked by forty plus seizures a day. Just a few months ago our lives crashed into a world we had no idea existed. Just a few months ago we were forever altered in the deepest core of our beings. Just a few months ago we watched as a combo of Hope & Nasty was injected into our baby. The hope hanging in the air was tangible. So was the nasty. Would he be a miracle? Would he not? We stood there...frozen. An undone mixture of faith & fear. You don't have the luxury of hindsight when you enter IS. It is a land of little to no answers. No assurances. A lot waiting. A lot of testing. A lot of doctor spea...

It's like a super EEG That's what Dr. Neuro said. She didn't do it justice. ::smile:: There were more electrodes. Heavy duty glue to hold them in place. Data was recorded in a multitude of stimuli. Or is it stumulus? Darkness. Brightness. Flashing light-ness. Creepy twilight zone noises were funnelled through head-phones. Among the most promising things this study can reveal will be if Trevor's brain deciphers a difference between noise & language. That'll be huge for us to know...cause right now nobody is quite certain. He likes to play his cards close! Anyway...here's a video of Trevor listening to the twilight zone music. Unbelievably...we caught a smile too! His courage melts me!

I'm sure I sound like a broken record but... Hospital days are excruciatingly exhausting. Emotionally. Physically. Mentally. But mostly emotionally for me. And right now I'm just way too zonked to gather my wits & thoughts and do justice to all that we learned today. Without a doubt my dreams will be saturated with AEDs & seizures & babies screaming & bizarre buzzing noises... ::smile::

So...here it is. B.E.A.M. day. For so long it's been looming...now it's just one more sunset away! I'm not exactly sure why I have butterflies in my tummy? But there they are...tumbling around making me nauseous. Feel free to analyze! ::smile:: I think I already mentioned that Dr. Neuro also referred us for a 2 nd opinion with her mentor - from Boston Children's. He not only agreed...but freed up a slot just for Trev! How great is that?! Plus...we have a whole hour & a half. Just him. Us. And Trevor's chubby charts. My heart is really hoping he'll have some advice or ideas outside of what we already know? We were tossing around the idea of taking the big kids with...and making it a family day. There are lots of cool things to do in the big B. Buuuuut ...with it being such a long day & Pop-pop on the mend...Grams offered to keep them for us instead. (Jen...I'll pick your brain next time!) Have I mentioned that I love my mom! Couldn...

I was wrong. When we bumped into Dr. Genetics at the zoo she didn't have results sparkling in her eyes. I guess it was just recognition. Which is nice, I suppose. That she'd know our family without sporting her white coat. I know it was my imagination because I finally called last Friday afternoon. She had just gotten the results in that day. The first line of genetic testing (for us...there seems to be no real protocol ) was called micro array . This stuff is WAY over my head...but from what I understand they harvested several vials of Trevy blood & sent it off to a lab to be studied. Insert mental picture of a creepy dungeon filled with wild haired crazy eyed professors! They were micro-scoping for chromosomal oddities. Trevor's DNA came back "normal - with slight variants ". Again...over my head. ::smile & sigh:: Dr. Genes said the abnormalities found were the kind she sees often...but that Jonathan & I will most likely need to contrib...

It's always fun stumbling onto nifty things. Like SeizureTracker ... an on-line tool created to help parents living with epilepsy stay organized with their child's medications, too many to count doctors appointments & seizure activity. The kinesthetic in me went wild over the colorful graphs ! And LOVE that the info is all stored on-line...allowing you to provide Dr. Neuro the opportunity to follow your child's progress alongside you. I give it two thumbs up ... ...for whatever that's worth! ::grin::

meet the big monster and the medium monster and the baby monster is it just gonna be one of those days? Just in case...I think I should brew pot number two!

We retired Trevor's 1st pair of shoes. And while a clutter bug I am not...the temptation to bronze those little Stride-Rites has been nagging at me. Those once white now dingy super wide size fives. ::sigh:: They're worth far more than the craigslist price. Stinkin' cheapskates! ::kidding:: The new ones are cute too though. Actually they're exactly the same. Except still nice & bright white . Plus a whole size bigger. He's wearing a size 6 1/2 extra wide! Chubby feet run in our family. Adorable on the little ones. Excruciating on mommy who is ever searching for shoes to make her feet look cute. At last month's therapy session, PT recommended *cookies* to put inside his shoes. His little feet still curl inward quite badly. And recently he's been stumbling. A lot. Which would be cute but for all the crying & ouchies & even random nose bleeds! I gave it the month...but the pricey inserts didn't really seem to be helping. Actuall...

It occurred to me today that somewhere along the way I lost my sense of memory. I blame it on the kids. It takes a lot of brain cells to effectively care for three bugaboos. And in the process of learning love lingos & how to appropriately apply teachable moments ...all my memories have been squeezed into the inaccessible abyss of my brain. Shelved & smothered in cob-webs. Except for my strep-ories. Every year... like clock work ...I get a case of strep throat. And for some reason I can always remember the particulars. Like how after two years of praying & innumerable *scheduling* kits...the other kinda test finally yielded two blue lines! Baby number two was on the way! And down I went with strep the same day. I remember being worried it might harm her. It didn't. Funny...I remember that too. *smile* Then there was the time after the first rains in Tanzania. Boy was I sick. And insanely hot. Curled up in a fetal position on our bed which was strategicall...

(first...you make sure no one's looking...and then lick like crazy) (...should you get caught...smile & work the cute!) (then unashamedly resume batter licking while you wait...) (...for the final product. Yum-alicious!) (bonus picture...which mommy forgot to post with the zoo pix)

We have truly been humbled & moved by the out-pouring of support & compassion we've received from our sponsors since Trevor's diagnosis. Case n' point...this email we found in today's inbox... Danielle & family, Our Discovery Club kids were doing a missions project this year, and chose your family. Even though you are not returning to Tanzania, we still want to send a care package to you and your kiddos,but want to be sure we send it to the right address. Thanks so much for letting our kiddos be a blessing to you and yours. We’re praying for you. There aren't really words... ...but this *strepie* is sniffley & smiling!

My dad is doing really good. And true to form is determined to come home tomorrow! I on the other hand have Strep! Ugh... Again true to form...I'll be down for the count. For awhile.

5 am is right around the corner! That's when I'll be hitting the road. With my mom & dad. Headed to the hospital. Pop-pop is having major back surgery in the morning & I volunteered to drive them up & stay with Grams until she's ready to head home. And you know what that means...right? It's his turn to be home all day. Alone. With three kids! *grin*

The invitation was really for Trevor...but the rest of us were allowed to tag along for Dream Night at the Zoo . Anually, the first Friday in June finds Roger Williams Zoo hosting this special event just for children like Trevor - who are living with unexpected challenges. The smiles started right from the gate where staff met us with a stuffed monkey for each of the kids. It feels like a small small world when you bump into two of your child's special doctors in one night! Including our geneticist who had the look like she had just been thinking about us glimmering in her eyes. Could the results be in that quickly? But mum was the word...because after all the night was about having fun! The food was deeeelish! And there were educational zones set up for the kids to learn about all kinds of neat stuff...and even get tattooed! Jonathan & I got quite the chuckle from the *African* exhibit where there was serious embelishment going on. But we used our Swahili to *heckle* ...

Soooooooooo ...Jonathan is out of town today. Which means I'm home. Alone . With three children. Did I really voluntarily have three???? Toby's turning everything into a ball. I'd kick him outta the house if it weren't so wet & chilly! Bristel's following me around whining. She hasn't had a cranky-free day in weeks! Trevor's cuttin ' a tooth & clumsy (he's banged his head at least five times already) & down-right monster- licious . Ahhhhhhhhhh ! Maybe I should find the job after all!? And let J be Mr. Mom!

We have yet to find the under-lying cause of Trevor's IS. Like many parents, we may never know. It is an insane & scary place to be...this land of unknowns. It took awhile for me to understand that infantile spasms is simply a symptom of something else. Because Trevor's life is still unfolding, we have no idea how IS will impact his future. We only know how it has impacted his past & present. And because of that...we covenanted as a family that we would participate in any way we could to help provide information for future IS families & maybe stumble on answers ourselves. The following clinical trial is one way that we (and perhaps you) can offer hope to others whose lives have yet to be touched by IS. Who can participate in EPGP? Do you have a sibling with epilepsy? If so, and your epilepsy is not due to a very obvious cause, such a significant head injury, brain infection, or stroke, then you may be eligible to participate. **** EPGP is for men, women, and childre...

I just am. I've been trying to ignore it. Eyes wide shut thing. Sheesh ...the pressure of being an ex-missionary! But it's just the way it is today. The past several days if I'm being honest. Which at this point I might as well. I'm just in a funk. I'm not really sure when or why it started. Just kinda crept up on me. Funks are sneaky like that. Hunkdered in the shadows waiting for our guard to drop. Just a bit. Or for life to slow enough for us to be caught off balance. And then *pounce*. Clobbers ya. Right in your weak spot. And for a spell...it's hard to breathe. Or maybe it's just me? Maybe it's faulty genes? (thanks mom!) *sigh* We were kinda gutted today. Jonathan didn't get a job that we were really hoping would come through. We're still reeling in the wind from the slamming of that door. And it feels an awful lot like we're back to very scary square one. Which I'd like to say is okay. But frankly. I'm...