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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Saturday, August 29, 2009

yay for yellow poop....wouldn't THAT be an awesome tshirt slogan? :)

Here's some updates.

1. Ridge's poop is lightening up. I don't know if it's "yellow"...but it's not dark like it was yesterday. Weird. Great!
2. Ridge is really happy. Smiling, laughing, not starving all the time, trying to roll over...and still the cutest ever.
3. Few spit up incidents. SOME, but few. And most of them have been just clear/white liquid (normal for those of you without babies...or those of you who had a baby that didn't ever spit up...yeah..sure...)
4. Met w/ our doctor yesterday morning and learned this: a) we will probably be here @ least four more weeks. 2) she actually called and spoke w/ a doctor @ the hospital in wisconsin where this MLT was discovered. he said most of these kids have blood transfusions 1 or 2 times a week for around the first year of life. he also believes the disease gets better w/ time/age, the first year being the worst. he believes steroids are good for active bleeds only. he keeps the kids on octreotide (we're on it)...and he didn't really support a couple of the drugs we'd thought about trying (we being the doctors and ourselves in agreement); one he thought was okay but didn't work in everyone and had some bad side effects in some...but there is a drug i'd asked about that he thought was promising and he'd had success maybe we will start that. there is also a doctor in ohio who is writing a grant and awaiting approval for another drug to be used in these MLT cases...and our doctor was very excited about it looking promising. so we are excited. and d)i can't remember what else i learned. but i learned some more . sorry i don't remember it right now...but i had to have a d) point....and only some of you will understand why/get it. to those of you who do, i tip my hat to you. if i were wearing a hat.
5. i went home last night. sawyer stayed up WAY later than me...i don't even remember turning off the tv. friday nights are no bedtime nights usually, or at least later bedtime it was okay. he watched several ninja turtle episodes (thank you uncle garret...or aunt binet' for forgetting it or leaving it at our house :) )....and i recall him waking me up and asking to watch i rented a free mickey cartoon through cable....i vaguely remember doing that and arguing that he needed to sleep, but i was too tired to fight it, so i just went to sleep. i don't remember turning off the tv very well, but i do remember at some point he turned over and went to sleep. sheesh, the kid was probably awake a LONG time...but i was out. i asked him this morning if i was asleep while he watched his movies and he said, "yes, you were sleeping."....i'm just glad he didn't wake me up repeatedly....
6. this morning, i took sawyer shopping for shoes. he'd never been present with me when i buy his he's never tried shoes on, other than when they've already been bought. this was an adventure...i picked out a few pairs i liked for him...and he stood on the little seat that he was supposed to sit on to try his shoes on....when he stood up he found/saw some other shoes he liked....he said, "I want those orange and white ones!" they were these bulky, skater like shoes-- tony hawk, to be exact....not too ugly on the shelf, but looked MONSTROUS in size when he tried them on....good thing he decided he didn't like them. the whole time i was praying that he didn't see the toy story light up shoes...but he did. why did he see them? b/c the box was bright blue like sky with clouds and all the toy story characters on it. and of course they had his size. and of course he tried them on b/c i let him. and of course, THOSE shoes weren't "too tight"...and of course i'd said my entire life i'd NEVER buy my kid character stuff, at least clothes-wise...and of course, i HATE light up shoes. but sawyer wanted them. sawyer didn't GRIPE about them, for the first time in MONTHS he didnt' gripe about some shoes being bought them. actually, sawyer's Nanny and Rita kind of bought them, b/c they gave me their Kohl's cash, and the shoes were on sale good enough that the Kohl's cash paid for kind of they were free. thankfully, b/c they are dog-ugly. here, i'll show you a picture:

see those cute nikes? THOSE are the ones I like....liked...whatever.

so anyway, that's our weekend so far. and to all of you friends, family, and people who love sawyer enough to buy him things-- this is not free range for you to begin buying him oodles of character apparel. for the love- please do not...these shoes are enough. unless you buy him can go CRAZY buying him character pjs. i'm ok with it. but all the stuff people will see him wear in public...let me choose how embarassing i'm willing to go. :)

that's all i know so far. more tomorrow if time allows.

love to you all--
the carys


Amanda said...

SO happy things are looking up finally! The goofy character clothing love must be genetic. I am Cary by blood and my youngest used to dress up in costumes (Power Ranger, Spiderman or Chiefs fb uniform) and accessorize with shark flippers, fins and goggles (think kid in Big Daddy movie). He thought being in costume meant others couldn't see him. Before I had kids I used to giggle to myself when I saw outlandish things "other people's" kids wore - they had the last laugh!

Christine said...

I continue to pray for you guys. So glad to hear the improving news about Ridge. Also, thanks for sharing the story about the shoes-too funny!
:) Christine

The McCoys said...

I love that the Lord is providing some answers and options. I pray for your continued strength. Just know you are speaking volumes about trusting in the Lord even when it seems impossible.

I love the story of the shoes. You know I have the same rule about clothes and shoes...note to self...don't take Dylan to Kohl's :)


Mila Kociuba said...

dear mrs. cary...

i just wanted to say i'm so glad i had you as a teacher last year ( and that you were a good teacher at that!!) i'm taking concurrent algebra this year at yukon.. and to be frank, if it weren't for you i wouldn't have one clue what the heck the professor is saying... so i owe it all to you.
hopefully i'll be able to adapt to his teaching ways....someday. haha

i'll pray for you and your family. the way i see it is that the only reason God put you in this situation is because He knows you can handle it. it may sound weird but i love you mrs.. cary.. ha.

and i hope for the best.

sincerely, mila.

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