happy being trevy

Okay...so first let me just clear the air about something. I've mentioned already that I enjoy nicking. People. Things. Whatever. It makes me happy! And I deserve a little happy! So... all that to say ...some people may be mortified at the nick I've given Trevy. One of the nicks. He has many. But this one may cause some to cringe. You have the right to cringe. I have the right to happy. So we're kewl. K? My used-to-be-fave Trevy nick was Heavy Trevy . Or HT. Affectionately given to him by Grams. During his first stint with Acthar (ACTH). When he inflated like a puffer fish! Don't those cheekie weekies just bring out the baby talk in you? Who wants smoochie whoochies? Heavy Twwwevy want smoochie whoocies? ::Muah muah muah muah muah:: Yep...Heavy Trevy was a keeper nick. But alas...we've since entered the world of appetite (and yet ironically not seizure) suppressant meds. And the chubby thighs lost their pinchie winchie-ness. Which probably explains why we don...

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I consider each of my children a Gift. A blessing. Most days anyway! ::smile:: And even though my "big kids" have been SO resilient through this whole crazy ordeal. I still worry. Cause I'm bent like that. Which is why this post captivated & inspired me! And is now on my must read list for every parent raising blended needs children...

I suck at captioning photos...so I'll spare you! But I *heart* snapping them! And these are my fave subjects! Okay...so this set needs a lil' explanation... Toby "injured" his ankle racing around like a wild child. And Bristel enjoyed playing doctor to fix him all up for tonights game. Against "the good team"! Am I the only one who wants to pinch that cheek mug?

I woke up this morning with one. A stress headache. I've had it for days now actually. It's bosom buds with the perpetual knot in my tum tum. (listen people...I have THREE kids! I'm allowed to use the random kiddie word!) Course I always go a little mental when life feels heavy. In fact, it's a miracle I've lived this long without an ulcer! I think too much! WAY too much! I stress out too much! Seriously...WAY too much! Toby totally comes by his anxiety issues honest. I have a knack for mountain-ing mole hills! Which may be precisely what I'm doing with this whole travelling to Detroit thing-a-ma-bob. But until Dr. Rockstar has a chance to review these... ...and calls me back with a firm answer. And his secretary sets up a firm date for a consult. And our insurance gives us a firm green light for coverage. So I can book some firm tickets. And give our fan club a firm idea of what the heck is going on...in our journey to rescue that muchkin down there... I'm...

Dearest Sophie ... I just wanted you to know that Trevy's family will be praying for you especially this week! You are in our hearts and minds constantly. This is a big...exciting...scary week for your family! In large part because... You have an amazing mommy! Who passionately advocates...loves...and persues hope for you! She may not know this...but she has become a very special friend to me as we've journeyed together this past year. A friend who allows me to be open & honest...but always encourages me to cling to Hope! I know she's worried. And freaking out. And that's okay. Because now it's my turn to be the friend (at least one of them) who just listens...loves...and reminds her to cling to Hope... And as this new week dawns...I wanted you to know how special your mommy is! And how amazing & special you are! Hugs...and prayers...and best wishes for this week! XOXOXOXO... ...Trevy's mommy

I woke up this morning groggy. Seriously groggy. Like...I'm moving through water. Swirled with sand. Nose barely in the air zone. I've had quite a few of these days over the past year and a half. I think it's my internal defense mechanism. You know how some newborns zonk out when they're overstimulated. That's totally me when life feels overwhelming. I just shut down. And nothing comes easy. Choosing breakfast is enough to melt me down. Everything is a chore. I've read posts...and desperately wanted to comment. Tried even. Only to delete it in frustration. I'm a writer! Words should come easy! But on groggy days...they don't. When life is overwhelming me. Nothing comes easy. And I'm feeling very overwhelmed these days. Overwhelmed every time I think about the possibilty that our insurance may not agree that we have no choice other than seeing Dr. Rockstar. I'm not looking forward to sorting this out over the next couple weeks....

Bristel has been such a super hero princess! She only got misty eyed when the dentist had to take an x-ray. Everything else was cake! Dr. Toofer said what with the swelling and newness of the trauma...it was hard to say just how much damage was done. And scheduled a follow-up for next week. Bri-bee did lose a whole tooth. Roots to tip! Makes me a little queasy lookin' at it... I sent the kids on a scavenger hunt yesterday afternoon to find the missing chomper. And they did...jammed between the back step! The accident itself happened out front... I'm no PI or anything...but the back step tooth leads me to believe that Bristel cracked her mouth again when she passed out! A second tooth was chipped. Which was probably the chunkies I saw coming from her mouth. I know...lots of gory details! ::smile:: And a third was moved. It's now pointing towards her tonsils... The doc doesn't really want to remove the tooth. Evidently it's better to leave it for nature's course....

I always thought it would be Trevor. My seizure boy. Having a smack-down with the ground. Resulting in lost teeth. I was wrong... VERY! Busy in the kitchen. Being all June Cleaver. Cause I like making dinner for my fam . And eating it together. I guess I'm an old fashioned girl. Rockin ' a nose ring. Anyway... I heard the blood curdling scream. And went running. Leaving the corn muffin mix sitting in the bowl ready to be stirred. Honestly...my kids scream all the time. Over nothing at all. So I wasn't prepared to see that ! Bristel crumpled in a heap right outside the back door. I learned later...from Toby...that she had fainted there. I thought the accident happened there. I picked her up just as she was coming too. And the screaming resumed. Opening her mouth wide enough for me to see. All that blood ! The missing tooth...or teeth . I'm not entirely sure. I'm too afraid to take a good look. I'll let the dentist do that in a few... Chun...

I'm the nick-er type. I just love giving people nicknames. It's fun. The only time I use any of my children's given names...is when they're being naughty! Which lately...has been quite often! But I digress... I've nicked all of Trevy's doctors too. Nothin' fancy. Just whatever comes natural. Dr. Neuro. Dr. Pedi. Dr. Ortho. Dr. Boston. I like Dr. Genes...that was cute. I'm not even sure when I started mentally nicking him Dr. Rockstar . He's pretty much an IS hero. In fact...I hardly had my steady IS legs before I first heard his name. And one thing became clear quickly. Everybody trusts him! Especially those who've been given the privledge of seeing him in person. And further...how many Dr. Neuros make themselves accessible via email? To non-patients??? Within hours... minutes even ...of clicking send???? That is amazing! He's kind of a legend... A Rockstar . Moonlighting as a pedi neuro. ::smile:: (editors tip: cli...

Always... Always... Always... Ask for copies of your child's records! Don't be like me. And wait (because it's easier than facing nasty office administrators) until you NEED it! EEGs come on a disk. As do PET scans & MRIs. The notes from the neurologist are typically in paper format. I request being "cc-ed" into those. Which usually means...an envelope in my snail-mail box a month later. You can also ask for a print-out of the EEGs. I find it super handy to actually see with my lil' eyeballs what Trevy's brain waves look like. With all the data my brain is trying to process...I need to have information in every way, shape & form possible to help with absorption! Anyway... If you're not sure how to collect your child's records...my suggestion? Ask the person with whom you have the best rapport! He/she'll know how to get you the copy in the easiest way possible! And save you the stress headache of asking the resident meanie....

This week has been swimming in tears. We got the call last Tuesday. That Jonathan's dad had passed. Was released. Walking with Jesus. And tears flowed... ******* " When words fail, tears flow. Tears have a language all their own, a tongue that needs no interpreter. In some mysterious way, our complex inner-communication system knows when to admit its verbal limitations...and the tears come. Eyes that flashed and sparkled only moments before are flooded from a secret reservoir. We try in vain to restrain the flow, but even strong men falter. Tears are not self-conscious. They can spring upon us when we are speaking in public, or standing beside others who look to us for strength. Most often they appear when our soul is overwhelmed with feelings that words cannot describe... Did you know that God takes special notice of those tears of yours?" --- Charles R. Swindoll exerpt taken from For Those Who Hurt "You keep track of all my sorrows. You have collected all my t...

Did you hear about Marissa's Great Toy Give-away ? Nanny-nanny-boo-boo I'm gonna beat you! ::wink::