My photo
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

Tuesday, December 29, 2009

port's in....

Ridge is finished w/ his port surgery.  He is finally awake (basically took the kid 5 or 6 hours to fully wake up).  He is fussy and probably in mucho pain.  It took awhile for the port site to quit bleeding-- like, insanely bleeding-- but now it seems to be "stable."  He has his central line still, and will keep that for a long while, and he also has his EJ iv....until we feel like the port is comfy enough to use.

Here's what little man looks like tonight:


and if you can't tell, he has a mondo bruise.  He's been having some d-sat issues probably bc of the anesthesia.  His hgb dropped 1 gram, but the resident told us that is normal w/ a procedure like that, so we don't have any reason to think he's still bleeding MLT wise right now.  Poops are yellow, but steroids are higher, so that's part of the reason.  We don't want to stay on those steroids at the dose he's at.  It's still lower than the dose he  USED to be on, but it's higher than what we would like for him to be on.

Doctor says after 48 hrs of having the port, if he is still doing well/stable, we should be able to go home again.
Good thing, bc apparently they are doing away w/ meal vouchers in this joint, and if i'm going to be paying good money for supper, or lunch, or even breakfast, i am going to be less than thrilled eating all of this cafeteria food.  With a voucher, the cost is somewhat diffused, so it isn't too bad eating here.  But I can go somewhere else for the same price or less if they aren't going to give out vouchers anymore.  Boo for that.


Keep Ridge in those prayers!

Monday, December 28, 2009

two is better than one...

quick update bc well...i just don't feel like being on the computer right now, really, but i wanted everyone to know what's going on.  a few pics are here.

if you hadn't gathered, we are back at the hospital.  we aren't 100% sure what happened, but ridge was having a massive, PICU bound bleed on Friday (Christmas)....we got him all recovered, WITHOUT heading to ICU, and he has been stable since Sat. morning.  We are still at the hospital, however.  We are going to do some "fine tuning" on some medicine issues and we are also getting....a PORT!  I am incredibly excited about this.  Ridge has a central line, and will continue to have that, bc it is necessary since he has a continuous infusion of Octreotide.  However, finding a vein for an IV is sometimes a very difficult process, and we did not have time to waste Friday on finding a vein.  After over an hour of trying, the PICU dr. came by and said he's set an EJ-- external jugular- an IV in Ridge's neck.  They got this one very quickly, but it is not really a place we want an IV all the time (as in, I don't want that being where they have to go for the IV every single time we need blood)....ANYWAY, so discussion arose about a PICC line, which is in the arm.  It is more permanent, and he could go home w/ it.  This is a great option.  BUT EVEN BETTER was the option one of our docs came up with today- "how about a port?"  a port is permanent, and isn't open to the world, and doesn't require any maintenance really on our end of things.  So we'd use his central line at home, but the port would be there, under his skin, for when we came in to get blood or when his central line clotted off, or whatever.  It would be a second access.  And it would save all that searching for an IV.  Our surgeons haven't ever put a port in a kid this small who ALSO has a central line.  But tomorrow, at noon, Ridge will be the first here to have it done.  But he's been the first for other things, now hasn't he?

So pray for us tomorrow-- that the procedure goes off w/o a hitch...and that things are as good as we think they will be! it will be an exciting day!

oh, and i don't know when we get to go home, so that's not included in the update bc i don't know when it will be!

Saturday, December 26, 2009

thank you

Thank you, God, for having the roads clear for us to make it to the hospital.  Thank you, God, for keeping Ridge alive while we waited what seemed like forever on the blood to make it to us.  Thank you for preserving his life.  Thank you for our ability to hold him in our arms.  Thank you for letting the picu doctor get his IV in, even if it does have to be in his stinkin neck.  Thank you for nurses who love my son and who take the best care of him we could ask for.  Thank you for nurses who take care of us, even providing us with some Christmas dinner.  Thank you for giving us two sorts MLT free days at home.

On a somewhat sarcastic note, God, thank you also for giving us the wisdom to bring our own meds with us and our own hgb monitor w/ the ridiculously expensive test strips, since half of Ridge's meds weren't ordered correctly and since apparently we are going to have to check his hgb ourselves.   Thank you for giving us the wisdom to bring that stuff.

Thank you for always taking care of our every need.

Friday, December 25, 2009

today...it's Christmas. it sure doesn't feel like it.

Well....check your calendars, people...it's Christmas day.  Amidst the carnage of the flipping Oklahoma blizzard, it's Christmas.  I am sitting in our familiar hospital room bc Ridge is bleeding again.  They can not get an IV in him and his hemoglobin is rapidly dropping.  I am super sick to my stomach over all of it.  We can stop his meds to give him blood but then he will start bleeding worse.  I think this probably warrants a trip to the  PICU which means we won't really get to see family for Christmas.  Even when they arrive, we won't all get to hang out together. No one's said we're going to the picu but i see no way we can avoid it.  I HATE THIS.  I think this sucks.  They are sending a picu nurse over to do an EJ  -- external jugular....an iv in his jugular. THAT'S not scary to me.  This all feels so hopeless. I'm so glad we celebrated our Christmas earlier in the week.  I think this Christmas is officially the worst one ever.

I hope you enjoyed time with your family today.  I hope you were all safe on the roads if you had to travel in bad weather.  I hope you got some good gifts, I hope you gave even better ones, and I hope you know the greatest gift of all for the season...and for the whole year round.

And I hope they get an IV in my kid, he stops bleeding soon, we avoid the PICU, and we can flipping outgrow this disease like nobody's business.  I HATE ALL OF THIS.

and although I'm saying with a huge Clark Griswold attitude today...Merry Christmas

Thursday, December 24, 2009

meds are here

BD from CVTC- thank you for being our santa and bringing us Ridge's meds!

all is well in our household again...for now!

Christmas?

Okay...I'm so not one for complaining since all of this has happened to us this year.  I'm all about finding our blessings, no matter where they are hiding.  But, if you are an Oklahoman who was glad to see this hideous blizzard, STOP reading now.  Because for just a minute I need to clear my head, my chest, whatever.  This won't change your life.  This won't increase your Christmas spirit (I don't think....I actually don't know where this post will endup)....

I hate this blizzard.  HATE IT HATE IT HATE IT.

Ridge got to come home two days ago.  It has been the greatest two days-- well, one day-- EVER.  yesterday.  today, notsogood.  Not bc Ridge is doing badly.  In fact, I think he's doing great.  But because even with this awful blizzard in the forecast, our home health people who are wonderful already and aren't mad at us for calling eight gajillion times, well...they didn't send Ridge's Octreotide yesterday.  It wasn't due till today.  This is the med that runs in his central line.  It is a continuous infusion and is required to keep his bleeding at bay.  The last time he was without it, we went into a major bleed.  First of all, I'm not sure how we'll get to the hospital if he goes into a major bleed.  Second of all, even ambulances can't drive in this stuff apparently.  So what are we gonna do?  I guess cut off my arm and squirt my blood into his central line if he needs blood.  I know, I'm too extreme.  But any parent would do it if they had to, and you know it.  So anyway, now the super sweet guy who is delivering our Octreotide has been stuck on I40 for 3 hours or more.  Apparently he is driving a pontiac vibe, and it's just not able to handle the snow drifts. of course it isn't.  and he isn't able to be with his family right now bc he is stuck at a shell gas station waiting on one of Brandon's friends to go get our medicine bc Ridge HAS to have it.  Thanks be to GOD for this particular friend and his 4wd.  I can't stop crying like an idiot bc it's his Christmas eve, too.  He is giving up this time with his family, and our delivery guy is missing time with his family, and we have to have Ridge's medicine, and I'm super afraid someone's going to have a wreck, and just as afraid Ridge will not get his medicine...

I'm reading about people who are stuck at work, whose husband/dad/mom/wife/whatever are stuck at work or in a store or on the road or in a hotel w/ no food but vending machine food...and I'm just exhausted by it.  I know it's still Christmas.  The gift of Christ is still the same, still as awe inspiring and unbelievable....

but shouldn't we be with our family on Christmas?  I was overjoyed to be HOME with my family for our Christmas.  now all of these people who had no reason to think they'd be separated at Christmastime ARE separated at Christmastime.  I just think it's horrible.

I pray you have a blessed Christmas. Safe and warm and that you reflect on the birth of Christ.  I pray that there are no distractions in your night to keep you from the true meaning of Christmas.  But if you find yourself distracted by things like the weather and your absent family member or your son's medicine missing or that your husband forgot to give your son his 3 oclock meds even though he said something about giving the 3 clock meds and you thought he gave them and now the schedule is all messed up and our friend cant get the meds to us because he is needing an alt. route to get here....well, i don't know what to tell you to do there.  i know what i should say "textbook Christian" style.  But I don't know what to say.  Because I just want to throw up and cry and give up on all of it.  MY SON NEEDS HIS MEDICINE.  So come on Christmas miracle.  we gotta have one.

Wednesday, December 23, 2009

no posts for today, again, except this one

As I unpack things here and there from our long stay at the hospital, I am reminded of how much we are loved.  Thank you again to all of you who have offered up prayers, sent money, sent cards, visited, etc etc.  I know we will be in the hospital again, but hopefully NEVER for that many days on end.  I know it was 21 weeks, so that's...what, 147 days?  wow.  close to half a year!  sheesh. 

I unpacked a bag full of cards.  Cards from former students who not only sent several cards of encouragement, but also sent notes via email or facebook, and some even sent money to help out, which is extra sacrificial in my eyes because while I know they are now "adults" they are still in college and their generosity is just overwhelming.  Some of my students' parents have given money, given words of encouragement, offered up prayers for my son.  So many co workers have done the same- some coworkers I've never even met.  Churches we aren't familiar with....people we've never met....community members I don't know at all.  I came across a hundred (well, not really, but a lot) cards from my Aunt Denise, who sent one almost every day when Ridge was doing really badly and has faithfully sent them pretty much weekly since he's been out of ICU.  And every single one of them- not just the cards from her, but those are the ones I'm talking about here- were exactly perfect for our situation and whatever we were facing that week, that moment.  Everyone has been so good to us.

When Brandon went into walgreen's last night to pick up our five small bottles of medicine and one weird case of caffeine vials that I could barely even open (okay, i couldn't open it)....he told the girl at the counter he needed to pick up some medicine for Ridge Cary.  The girl got it, or maybe not, I don't know, but she looked at brandon and said, "Baby Ridge?"  He said, yes.  She said, "I was supposed to have Mrs. Cary in class this year.  I am so glad you guys are getting to go home.  I will be praying for your family." I probably quoted that wrong- but... I love that girl. I don't even know who she is or if she will read this.  But I wish I could have her in class- I wish I could be there this year.  I love our community and I love our students, and I love that Yukon knows Ridge as Baby Ridge.  I don't know how long he will be "baby ridge" to this community, but I am glad he is for now.  I am glad everyone is so excited right along with us that we are home. 

My sweet boy is crying now- but he's crying at home.  So I'm gonna go hold him. At home. In our recliner. In our living room. In our house.

How great is our God?!?!?

no posts for ...today?

idk how long it will be before i post again, bc i'm taking, or planning to take, a small sabattical (i know it's misspelled) bc...WE ARE HOME!

hgb when we left hosp according to our monitor- 12.9
hgb this am- 12.7
so we're home at least for today!

if we are home tomorrow there is a chance of a news interview, i will try to let you know if that happens or not.

YAY for being home.  we had our "worldly" christmastime this morning.  wherever christmas morning finds us, we will be celebrating the birth of Jesus, and hopefully another day at home!

Monday, December 21, 2009

no...not mastercard, but we might need one.

heads up-- you might want to pause the playlist for this post, you might need your sound for something else...

so i'm borrowing some slogan-age here....and i'm honestly not a fan of credit cards, or debt in general-- in fact, i am a fan of dave ramsey-- but i think the mastercard ads fully fit this post....

one bag of octreotide (these are changed every 24 hours people)...$500*
a month's supply of Ridge's oral medications AFTER insurance has paid...$226.30
cardiac and apnea monitors AFTER insurance has paid (per month)...$60
pulse-ox monitor rental per month....$150**-- this is a REDUCED rate (which we are grateful for!)
hemoglobin monitor....$600**
hemoglobin monitor test strips/microcuvettes....$159 for 100, so about $600 per year**

*insurance will cover some of this
**insurance will cover none of this

being home for the first time in five months...as a family of four....priceless!

I have no idea how we will pay for pretty much any of that stuff.  I have no idea why it costs so much.  I think it's all pretty stupid.  As if it's not trying enough to have a sick child, let's make sure all of your necessities cost a bajillion dollars.  Obviously I'm a worrier.  Obviously I know God will somehow provide bc he always has and always does and always will.  But seriously?  Some of those prices, if not all of them, are seriously jacked up.

One of Ridge's meds, before insurance, was going to cost $800 per month!  I just think all of that is so....tragic.

This morning as we hooked Ridge up to his new Octreotide setup, I was in love.  In love with being able to tote my baby around w/o an IV pole.  As the other monitors arrived, I was not in love.  Not in love with him being on monitors....not in love with not being able to see his exact heart rate.  Not in love with feeling tied down.  As I found out some of the costs, I was even more not in love.  It would honestly be CHEAPER to live at the hospital.  i am so so so excited to go home.  But some of that joy is kinda gone because of the stupid cost and the stupid monitors.  And the not knowing if he even really needs to be ON all the meds he's on.  And of course leaving is bittersweet bc we have so many new friends here and I really will miss our nurses.  I know we will see them again, soon, and probably often.  But I will miss seeing them every day.  Because in a weird way this hospital has become normal and they have become friends/family.  What the heck am I gonna do all day? :)

Money just makes me sick at my stomach sometimes. ick-o.

We will go home, on my birthday.  I keep forgetting it's my bday, bc really I just think it is so grand we are going home.  Yes folks, amidst crazy insane medical bills, right around Christmastime, in what seems only like a dream, the Carys are going home.  pause that playlist i've got at the bottom of the screen, bc i've got something to say:




WE'RE GOING HOME!

Sunday, December 20, 2009

tuesday's child is full of grace...

but that doesn't matter so much to me bc neither of my kids were born on a tuesday.  HOWEVER, we might be getting to go HOME this tuesday! here's hoping and praying.  Tuesday celebrates my 28th bday, so i could totally handle taking my baby home for my birthday.  tomorrow we have an interview for something with OBI and we are supposed to be getting all of our home health supplies delivered to the hosp. so we can practice with them, and we are also supposed to be getting a delivery that i am to take by the doctors (a Christmas present for them!!!) so it will be a CRAZY morning here.  if we get to go home on my birthday, we will also be going home on our "Christmas"....at least the present part.  We've decided Santa can drop everything and visit us whatever day we go home because who knows how long or short we will get to be at home.  So Tuesday has the potential to be a wonderful exciting day!  We shall see.  How nice it will be on Christmas day, if we have already had our present/gift part of Christmas and can just focus on time as a family and on the thankfulness we have this year for being home (hopefully!), being together (for sure!), and having a Savior whose birth is most worthy of celebration (DEFINITELY!).
Oh what a day! we shall see....

Friday, December 18, 2009

remembering....

Today...my husband is older than 30. ha ha haaaaaaaaaaaaaaa.

Yesterday, I wrote about this not being the first birthday my husband has spent in the hospital.  The majority of my small group of followers knows that two years ago, Brandon's dad died.  Today is the two year mark.  Right around Christmas, and right after Brandon's birthday.  So December isn't always a fun month.  So anyway, that's what we remember for Dec. 18th- the day Brad left this earth and went on to Heaven.

It feels kind of wrong to say I wish he were here- not because I don't, bc really, I do wish he were still with us.  Wrong only bc for whatever reason, God allowed Brad to be taken from us and taken TO Him.  And in that I'm not divine and all, I feel like it isn't my place to say I wish he were here  NOW since NOW he is in Heaven, and from what I figure, while on earth I know he loved life and loved his family, he is probably having a TREMENDOUS time in Heaven.

I am so irritated bc I just typed the rest of this post only to have it deleted.  So I will try to duplicate it....but I'm sure I will fail.

I don't understand why things like this/that happen to people like Brad.  I don't know how I feel about "God allowed this to happen" mentalities either.  I mean, obviously, God ALLOWED it to happen, but it's a little bit of a tough pill to swallow taking it to "this was part of God's plan." hmmmm....I'm not philosopher, and I'm not claiming to be, but I don't get that, and I don't really buy it.  But maybe it's true.  But I'm not swallowing that.  I just think it's something I can't understand.  I think God obviously KNEW it was going to happen, and he will use it for good, but seriously-  just don't get it.  I know it didn't surprise God. And I know that because Brad chose Jesus, he's in Heaven right now and wouldn't come back to earth to live even if he had a chance to.  So that's good enough for me.  I know he's happy and he's living a "life" better than even the great life he had here on earth.  So I will just remember him-- how he made me feel like another of his daughters, how he loved on Sawyer, how he had fun with his own kids, how he loved his wife, how he was always willing to help out- setting up stuff in the superheat for Sawyer's birthday party, installing our new dryer (even if he did scratch it), buying and delivering a freezer for Brandon and me, how he had a great smile and gave great hugs and how I don't think I ever met someone who didn't like him...how he was honest and didn't stand for things that were wrong.  How he knew his faith and was willing to be bold in it.  How he spilled some lime cilantro stew in the backseat of his truck and it was all orange (though it did wash out)....I also won't forget that the "bigness" of the things in our life the night we found out he had leukemia- like the fact our babysitters dumped us leaving us without childcare for a week before Christmas break and I was in tears over this, calling my in laws to see if they could help out, not expecting to hear what I heard on the other end of the phone- the bigness of that stuff in our life, it just disappeared in comparison.  How five and half days later, he wasn't even with us anymore.  Those are facts, but they aren't fun to think about.  So instead I'll remember how he didn't like the way it sounded when you squeaked a balloon.  Stuff like that.   And I didn't even know him long enough to have a ton of memories- but I don't have one bad one of the guy.  And I think that's pretty good.

So that's what I'll think about.  I also know that he wouldn't want us to be sad, though there will always be some sadness because he's gone...but he's gotta be happy right now--- up in heaven, dancing on the streets of gold...well, i doubt it bc I never saw him dance...well, maybe he's two steppin' on the streets of gold. who knows....but he is complete now.  He is where he was destined to be, because he made the choice to follow Christ with his life.

So for now, I will remember all the good things I do know.  Like how my husband, who I used to think looks just like his mom, has now begun to look often exactly like his dad to me.  And how my littlest boy is often the spitting image of my husband, and is just as often the spitting image of my father in law-- his granddaddy.  And I will remember today was the day, two years ago, one of the greatest people I've ever known left our lives to join the saints in heaven.

Thursday, December 17, 2009

birthday birthday



We will dig into this atrocity this afternoon in celebration of my husband turning the page into his fourth decade.  He is turning 30.  Everyone who wants to dispute the math there- to 10 yrs old is one decade, 20 is 2, and now he's ending his third decade at 30...so yes, he is beginning the fourth decade of his life. weird.  i'm still partying along in my 3rd decade.  Thank goodness.  :) jk, honey.  SOOO...
The cake looks crapperific.

I'm not really that bad. and the cool is marked out on purpose.  i thought rad sounded better, and more era-appropriate.

see, i'm actually a decent cake decorator.  don't employ me to make any cakes for you unless they are for children though.  here is sawyer's bday cake pics:




It was a monkey party. And I iced two cakes like monkeys, and every single one of those cupcakes.  So see, I'm not really terrible.

ANYWAY, to my husband, on his 30th birthday....
Love you!  I'm glad to have spent the last six and a half years as your wife, and I am glad that you are such a great dad to our kids.  Thank you for standing by my side and backing me for the most part, no matter what.  Thank you for painting a picture of loyalty.  Thank you for teaching Sawyer and I'm sure Ridge as well one day how to be respectful to their momma.  You are my greatest friend and I wouldn't want to be walking this road without you.  Sorry you are spending another birthday in the hospital, but I hope and pray that this year it is a super fun one, that you enjoy time with me and the boys and that you like your ugly cake and your not so ugly gift, and that for at least a moment today you feel a little "normal."
As normal as an adult can feel.  Since you know, 30 makes you an official adult and all.  Since, you know, we can remember our parents being in their 30s.  yeah, you're a grown up now...officially.  I wish I had a certificate to give you.
Love you! And don't worry-- sawyer said it best.  Last night I told him, "tomorrow, Daddy's gonna be OLD. He'll be 30!"  Sawyer replied, "but even if he's old, will he still be my daddy?"  to which I responded, "sure he will.  he will ALWAYS be your daddy."  and that's how this post ends.

Tuesday, December 15, 2009

I don't know....


I know I want to post something but I can not wrap my brain around what to post....this morning, I was listening to the Casting Crowns Christmas CD (wow...that's some alliteration) my gal pal Emily sent me.  Well, she sent it to Brandon and I...and I did leave it in the car for him to listen to on his way to work.  But ANYWAY, this song is on it:
"While You Were Sleeping"

Oh little town of Bethlehem
Looks like another silent night
Above your deep and dreamless sleep
A giant star lights up the sky
And while you're lying in the dark
There shines an everlasting light
For the King has left His throne
And is sleeping in a manger tonight

Oh Bethlehem, what you have missed while you were sleeping
For God became a man
And stepped into your world today
Oh Bethlehem, you will go down in history
As a city with no room for its King
While you were sleeping
While you were sleeping

Oh little town of Jerusalem
Looks like another silent night
The Father gave His only Son
The Way, the Truth, the Life had come
But there was no room for Him in the world He came to save

Jerusalem, what you have missed while you were sleeping
The Savior of the world is dying on your cross today
Jerusalem, you will go down in history
As a city with no room for its King
While you were sleeping
While you were sleeping

United States of America
Looks like another silent night
As we're sung to sleep by philosophies
That save the trees and kill the children
And while we're lying in the dark
There's a shout heard 'cross the eastern sky
For the Bridegroom has returned
And has carried His bride away in the night

America, what will we miss while we are sleeping
Will Jesus come again
And leave us slumbering where we lay
America, will we go down in history
As a nation with no room for its King
Will we be sleeping
Will we be sleeping

United States of America
Looks like another silent night



This song is also on my playlist now.  However, on the CD it's the Christmas version, but I can't find that for the playlist.  I forgot how much I love that song.  I don't know what deep thoughts to put to it, bc well, all you have to do is listen to it to be slammed around a little bit.  Also on my playlist is this song:




It's still a mystery to me
That the hands of God could be so small,
How tiny fingers reaching in the night
Were the very hands that measured the sky


Chorus
Hallelujah, hallelujah
Heaven's love reaching down to save the world
Hallelujah, hallelujah
Son of God, Servant King,
You're here with us
You're here with us


Verse 2
It's still a mystery to me, oh,
How His infant eyes have seen the dawn of time
How His ears have heard an angel's symphony,
But still Mary had to rock her Savior to sleep


Chorus
Hallelujah, hallelujah
Heaven's love reaching down to save the world
Hallelujah, hallelujah
Son of God, Servant King
Here with us
You're here with us
(Ohh, mmm, here with us)


Bridge
Jesus the Christ, born in Bethlehem
A baby born to save, to save the souls of man


Chorus (2x)
Hallelujah, hallelujah
Heaven's love reaching down to save the world
Hallelujah, hallelujah
Son of God, Servant King
You're here with us
You're here with us


Again, really, what do you say to that?  I am holding a fussy baby so it is a little bit difficult to put my words to "paper" right now.  But I can not imagine life without Ridge, ever.  And how amazing, that God, in His love for us, sent His Son in the form of a precious baby, a baby who lived and grew and died for each of us....and lives again.  I know Jesus our Savior is no longer a baby, but at this time of year, it is awe inspiring, at least to a parent, I would think, to imagine Christ as a baby.  Christ being born, given earthly life, laying in a manger, staring up at his momma.  What was He thinking?  Did He know who he was, even as an infant?   I don't know. I guess maybe it doesn't matter.  But it is just....amazing...to think of Jesus- God and man- as a baby.  Innocent (always), pure (always), but a baby- a baby who needed his momma, a baby who needed to be held, a baby who needed to be changed, a baby who grew into a child who learned to walk and talk and had to be taught things, even though He is really our Teacher.  I don't know, probably everything I'm typing is nonsense, since the precious baby on my lap is a little bit gripey this morning and did just poop in my lap.  Here's hoping it's not all over me.  My children, of course, are not the greatest babes to ever live- neither are yours, nor will they ever be.  Because Christ came and lived as a man, and will forever be the greatest human to ever live.  But as I hold this incredibly obstinate child who is about to get a diaper change....does he know...as he lays in my lap (lies in my lap?)...the greatness in store for him?  Does he know what the Lord has destined for his life?  Does he know the testimony his life can/could/will/should be? He is destined for great things.  So is the baby/toddler/child/teenager you hold in your lap, arms, or at a distance.  Thank you, Lord, for your every day miracles.  Help me, help us, to be faithful to You with those you have entrusted to us...


Saturday, December 12, 2009

pics

new jewelry/scarves posted on the photoblog

here is a cutie pie for this post though:

Friday, December 11, 2009

thoughts for the week

I want to recap my week as best as possible....so you can see how exciting our life is, I guess...

1. Sunday (okay Sat. night) I went home with Sawyer.  Sunday morning I went to get a box of cereal out of the pantry, and those of you who are not my FB friends don't know what I found there....unless you read my twitter updates.  As I went to grab the cereal, I saw a scurry.  As in, something scurried.  The something was very obviously a mouse.  I slammed that door as fast as I could and didn't look back.  ICK ICK ICK.  After Brandon set some traps ...actually maybe I did blog about this?...anyway, four traps and two days later, no mouse had been caught.  So I moved one trap under the kitchen sink.  Why? Because I found a nice little mouse nest being made.  I'm paranoid anyway, but everyone knows that traditionally speaking, mice do not travel solo. So I was sicked out.  Not as sicked out at that point as I was the next morning when I saw I'd caught the sucker.  So Brandon took care of it later that day and set 3 more traps under the sink,leaving one in the pantry.  Three days have gone by and no mice have been caught.  So I guess we had a lone wolf  mouse.
2. My days run together at the hospital, so let's just clump Monday through now here on this part of the post.
Ridge was having some dark poop Monday.  Things were not looking super.  Tuesday he was obviously having a bleed and there was talk of transferring to the ICU so that we could increase his meds but he'd have to be NPO and anytime he can not eat, he bleeds worse.  So they wanted close monitoring...so I packed everything up and got ready for the move, only to have it cancelled- THANK THE LORD-- because Ridge's hgb had gone up.  He ended up dropping more and needing blood but probably that was bc they had to try to get an IV in him and he screamed and cried the entire time, like any baby would, but crying always makes his bleeds worse or brings a bleed that might be at bay back to "life"....side note- sometimes it is impossible to get a baby to stop crying. Thank God he doesn't have colic bc we'd be in big time trouble with MLT.  So they got the IV. He got blood Tuesday night.  Wednesday things were rocky but turned around and yesterday yellow poop had returned.  We shall see what today holds.  That's it for Ridge updates.  Oh, his teeth are coming in well and he's super happy most of the time.  What's new there?  Now for Sawyer.  He is hilarious.  He also has the worst morning breath of any person I've ever known.  And some genius decided all kid toothpaste w/o fluoride has to taste like fruit.  Well THAT doesn't curb the gag-me-dragon-breath at all.  So....stinky he is. He also has found a love for the Christmas classic- Home Alone.  The kid has stayed up uber late the last two nights watching it.  I thought he'd fall asleep, and so did Brandon the night he let him watch it...but no, we were the ones who crashed.  Sawyer woke me up saying it was over. I can't believe he can stay up for the entire movie when we don't start it till bedtime. No more of that.  And apparently he thinks it's funny.  Brandon caught him laughing at all the right parts.  So that's cool that he's old enough to "get it".

I took Sawyer to see the Yukon Christmas lights last night. We drove around through the park.  This year, he absolutely LOVED it.  It was so fun.  If it hadn't been colder than a well-digger's hiney we'd have walked around to see the other half of the lights that you can't drive by closely.

Sawyer also said some funnies this week, but I can only remember one.  One night, as our nurse and blog-reader Susan was about to leave the room, Sawyer stopped her and said, "before ya leave or leave to go home, can you..." (are ya ready for this?)...."ITCH MY DADDY'S FOOT?"

We've been here toooooo long if our three year old thinks the nurses are here like as our...personal assistants or something.  :)

3.  Brandon has to buy my Christmas presents this weekend.  So that's exciting.  We also both have birthdays w/in the next two weeks.   He'll be the big 3-0....scary.  We shall see where we celebrate....my bets are on still being in the hospital, but as of now, I'm okay with that.  Ask me tomorrow when I'm throwing up at the thought of it.

4. I miiiight have found a little job.  I've put in my resume and teaching certificate to an online school for a grading position that God literally threw in my lap.  My mom sent me a text the other day to call Soand So at 555-1234, except a real person w/ a real number...about a grading job.  So I did.  Turns out the connections between Soand So and myself are many.  Not only does my mom confer with people who know Soand So, but my dad grew up in the same town as Soand So's mom, and he even took Soand So's mom on a date in HS! ha ha ha.  AND Soand So lives just a street or so away from B-Dawg and I! hilarious.  So thank the good Lord that she thought of me when it came to this job.  And prayerfully, I will be able to get that job to help replace some of my lost paycheck.  Not that most teachers would choose a job in education that consisted ONLY of grading. ha.  But I know an open door when I see one, so thank you JESUS!  Also, I've been quite busy with jewelry and knitting- several customers are out there!  So if you would like to be a customer of mine, you just let me know what I can do for you!

5.  I don't know when we are going home.  Good thing for today is, I'm okay with that.  I do know that when we go home, we will want a few days to ourself as a family of four.  I know everyone will be chomping at the bit to visit, but we know we may only be home a day or two, so we are asking friends and family to be considerate of that, for a few days, at least.  Hopefully we will be home long enough to have a couple of good days of visiting over the Christmas break.  As aforementioned, Brandon and I have birthdays, so we will be trying to work out dates and all of that to celebrate. Maybe we will have a Christmas, welcome home, 30th birthday and 21st birthday (yes, me :) ) extravaganza.

6. Please keep Ridge in your prayers, but pray for all of the families here at the hospital this Christmastime.  This morning there was a code blue serious situation down the hall, and of course I don't know anything about it bc it's none of my business, but I know it was scary and LOTS of nurses and other personnel were down in that kid's room.  It is no fun being in the hospital ever.  Least of all near Christmas.  And no one wants to lose their child ever.  Especially around Christmas.  It's not fair to have to watch your child suffer a disease or an illness that they, you, the doctors sometimes, have no control over.  It isn't fair for a parent to ever watch their child be sick, hurt, suffer, die.  I get it-- these are circumstances I can not control and I know that God has control over each and every situation.  I know that.  But it still just doesn't seem right that any child should have to suffer.  I know these are opportunities for God to show himself mighty and for God to work miracles and for God to comfort.  But these are times of desperation as well.  Times of frustration.  Times of confusion.    Especially now at Christmas.  It is so hard to take everything in with as much joy as you "normally" would.  It is also near impossible to understand anyone else's gripes or worries.  Now don't misunderstand me-- anyone struggling with financial, marital, superficial, academic, whatever kind of worries-- I know those worries are GRAND on your plane, in your frame of reference.  So they are important.  I get that and I know they are your "world"...in your world.  As I sit here with a child drooling all over my arm as I try to type- a child who has maintained a hgb of 10.1 for more than 48 hours- none of THOSE worries bother me.  I worry about how long I will have to live here.  How long my child will suffer from this stupid disease.  How much of my other son's childhood I will miss- HE will miss.  These are big worries to me.  These are also small potatoes compared to the mother several doors down who is probably wondering if her child will live or die today.  I try to remember that-- worries that seem so stupid and small to me are large to some of you and some of the world.  Worries that seem humongozoid to me are nothing compared to what some people worry about.  None of us should worry about anything but we do...so I'm not even going to go there- I know I'm gonna worry.  I know I'm also going to pray.  Home for Christmas or not, we will have Christmas.  We will be together.  Barring something completely unforeseen, this will happen. My kids will be with me.  My husband will be with me.  Ridge will have a first Christmas.  He will be alive.  We have much to be grateful for.
Don't gasp here- but last night I let Sawyer watch a Charlie Brown Christmas...and it was the first time I'd ever watched it all the way through that I can remember.   And as I watched Linus share the true meaning of Christmas, I couldn't stop crying at the stupid Charlie Brown movie.  Because crappy tree and all-  ugly pale walls, hospital bed, hideous uncomfortable blue couch and all- Christmas will still be here.  And it will still be the celebration of the birth of a Savior.  And nothing else will matter.  It might be there- in the back or front of our minds- but it won't matter.  Because all that will matter is that heaven came down to earth so that we on earth could be given the chance to one day go to heaven.  And that is what matters.

As does the smaller fact that I think someone just put some yellow poop on my leg.

Thursday, December 10, 2009

nobody....

nobody guessed correctly, but some of you were in the right ball park.  while i want to leave it open as a contest for a longer amt. of time, i'm not going to bc only seven people tried to guess in 24 hours, so really...how long am i gonna have to wait for a winner?  we'll try something else another time. :)  so right ball park= poop.  speaking of poop, ridge's was pretty yellow today. hooray! but we aren't going home this week bc he was having black poop and looooow hgb for a couple of days.
anyway...so the getup brandon was wearing in the earlier post was definitely poop related.  someone else guessed fishing something out of the toilet.  no, but it did have to do with the toilet.  everyone, well almost everyone, thought it had to do with RIDGE's poop issues.  no no no.  i know i talk mostly about ridge and his progress...but truthfully, if you don't know yet, sawyer is a riot. and sawyer doesn't like to poop.  and sawyer "vaporizes" his poop, according to my husband, until it is the absolute last possible moment before it's gonna be in the elmo undies.  so we'd stuck sawyer on the potty, and it wasn't 2 minutes later we hear "I POOOOOPED!"....and....as ALWAYS....it was smelllll-y.  so, brandon got all dressed up to go wipe a hiney.

good guesses, people. 

Wednesday, December 9, 2009

giveaway...this won't happen much!

first person to comment and correctly guess why brandon is in this getup wins a free button bracelet.  if you try to comment and it doesn't work,  you can email me your guess @ needstobebusy@yahoo.com.  if you want to scope out the button bracelets, go to the photoblog, or just check older posts on this blog. get your creative juices flowing.

Tuesday, December 8, 2009

quickly

Ridge is napping for who knows how short, so i will be quick as possible.

1. as earlier posted, ridge is bleeding.  so far today two very full black tarry diapers.  guh-reat.
2. his hemoglobin went from 9.9 two days ago to 9.2 yesterday to 8.5 today. super.
3. his IV was bad last night so he will need a new one for getting blood today.
4. the doc this week- one of our faves!- wanted to up the octreotide before upping the steroids in order to hopefully stop the bleeding.  this would mean ridge be NPO (no food by mouth-- but npo is abbr. for the french of this or something...why french? i don't know.  i'm just passing this info on).  ANYWAY...NPO for like 3 days.  no good. but our best option, really, since the steroids could be contributing to the pneumatosis crapola-alis intestinalis.  welllllllllllllllllllllllllllllllllllllll....THAT would mean a big fat trip to...you guessed it...COME ON DOWN TO...the PICU!  barforama.
5. so i called b-don (you know, my husband) to come pick up some stuff in case we moved before he got up here after work.  you know...bc we live at the hospital so i have like 8,000 pounds of stuff in our room (not really, but does anyone watch that show HOARDERS?  bc they literally took that much pounds of junk, trash, and DEAD CATS SHE DIDN'T EVEN KNOW WERE THERE out of this lady's house the other day).  anyway, he loaded a bunch of stuff up, and right before that, our lovely nurse for the day, breanna, checked ridge's H and H (hemogl. and hematocrit)....on b-dawg's (you know, my husband) last trip to load our many things into the car, the dr. met him in the hall and told him to turn around.  he then told us the HandH came back w/ a hemogl. of 8.8.  which is...HIGHER than earlier today.  which  makes sense, since ridge looks like this today:


you can't see it in the pics, but he's pink.  he is also trying to stand up.

okay so..i think i'm at
6.  they got an IV.  praise JESUS!  hallelujah and glory be.  not kidding at all. and it's a good one.  super good. super great.
i think that's all i have to update.  i have several pieces of jewelry i made this weekend that i need to post but can't right now. gotta get some things done before the kid awakens.

oh, and i don't know if he's still pink bc he cried his eyes out, SCREAMED his face off, getting the IV.  he always does. and the crying seems to make the bleeding worse.

anyway, keep sayin those prayers for this baby boy!

Monday, December 7, 2009

day by day by day by day...

i'm way tired and don't want to type a lot tonight.  i'm home. here's the update- ridge is having a bleed. before you go gasping, just remember, this is part of normal life for him until he outgrows this and/or is healed from this.  it's just annoying that it KEEPS happening.  even though that's how the disease works.  so anyway, dark diapers- check. brown to pink to red and all in between including clots in the spitup- check. plus he's getting FOUR teeth.  ick. craaaanky baby.  pray that this bleed would stop.  pray we could go home at the end of this week or sometime next week if not this week.  pray pray pray.  pray this bleed would fully stop bc it doesn't really seem like he's been totally w/o a bleed for several weeks. 

i have other things, some which are amazing, to update you on, but i am so tired. i am going to sleep.

good night.

Saturday, December 5, 2009

trying to grasp it all....

I apologize the playlist has changed for the night.  for awhile. for i don't know how long.


One of our nurses had part of this song posted as her facebook status the other day.  I have had it in my head since then.  I've loved it since I first heard it months and months ago.  And it is what I need right now.  I need it to play and play and play and play and play. So it is.  I hope you love it- whether it's an old favorite or this is the first time you've heard it.


I don't know where to go from here.  Do I want to be excited that we might be going home this week?  yes...but I am so scared.  I am excited.  but I am so scared.  more scared than bringing my first newborn home three and a half years ago.  I watched Sawyer run across the living room in his birthday suit tonight and I realized I have an incredibly cute son-- I have 2 incredibly cute sons-- but I can not believe how the time has flown with Sawyer.  He is growing.  He is a light in our life.  And I hate time passing so quickly with him, but I can only pray it passes quicker with Ridge.  i want MLT to be behind us.  I am glad that we are about to embark on some new territory- learning to really live, in the "real" world with this disease, disorder, whatever it is.  inconvenience?  not that RIDGE is an inconvenience- heavens, no.  That little boy is another light in our life.  I hate watching him get pale, watching him get or knowing he's getting an IV, imagining sticking him to check his hemoglobin levels.  I fear that I will not change his dressings right or I will not flush his central line enough or I will contaminate it and he will get an infection. I fear getting him around too many public places or too many people in general and him getting sick and possibly having a bleed at the same time or in some sort of correlation.  I want to be rid of the disease.  I want to have it instead of him.  I want it to go away.  go away forever. 
I know we were chosen to walk this road.  It is a narrow road.  A road less traveled.  It is our road.  We have a few families who walk it with us, and we don't know really any of them, other than one lovely soul who has been such a blessing to have to talk to. 
I heard a Jeremy Camp song tonight as I was taking a bath, in my house, with no 3 year old present, for the first time in four months.  "well I will walk by faith Even when I cannot see because this broken road
Prepares Your will for me"



aaaahhhhhhhhhh....


How can He love us so much?  How can I, we, RIDGE, be among the incredible few who walk this road?  I have my days when I want to scream WHY GOD.  WHY WHY WHY am I living through this? Why must I watch my child go through this? Why do I not get to have two normal healthy kids like what seems to be 99% of America?  WHAT WHAT WHAT?  I have my share of transgressions, I do.  But really?  REALLY?  This is my road?  This is my lot?  IS IT?  I have those days.  I have those moments.  And sometimes, mixed in with those very emotions, I remember, that for whatever reason, the Lord has set this path before us.  He set it out long before we were here.  And he will help us take every step we need to take. Because he loves us.  OH how he loves us.  So much.  And he will bring us through this....through the fighting, the striving, the tears, the joys, the sorrows, the bleeds, the sticking, the line clotting, the line breaks, the hard times, the good times, the birthdays, the Christmases, the events we have to miss because we are in the hospital or because we are too afraid to travel too far away for fear of Ridge's condition.  He will take care of us.  He will hold us as I lose my paycheck. He will provide when we see no way to pay the medical bills or the bills that are just regular people bills.  Sometimes, I think we truly will have joy in joyful situations.  It won't just be fake or going through the motions.  Because that's how it feels now.  I found myself wrapping Christmas presents and thanking God that Christmas is not about any of that junk because I had no joy in buying most of it or in wrapping it  (sorry family and friends- you are mucho loved...but "it" just seems so insignificant in light of LIFE)....I pray we will always, from now on, see the big picture.  That it is life, it is what God has set before us, it is compassion, it is helping our fellow man, it is LOVE that matters.  


And His is a love that I can't do without.  Because it is all that is holding me together.  And if you could see me in this very instant, "held together" is not even close to the term you would use.  I feel broken.  I feel out of place. I feel like I want to run away.  I feel like for four months I have literally been living in a dream.  Not a nightmare per se because it hasn't all been horrible.  But none of it has been real.  Not a second of it.  I don't know if I want it to be real.  I want it to seem like a dream for the next three years, four years, six years, however long it takes to get out of the "bad" part of MLT.  I will gladly sacrifice a few years of our life to get to something "normal."  It doesn't work that way.  I want to see the beauty in the "ashes"...I want to praise from the mire.  I want to rise above it all.  I want to escape the fire untouched....to crawl out of the lion's den whole.  


If His grace is an ocean...we're all sinking.  Oh...how He loves us.

newsy news

Ridge got blood last night.  It has boosted his counts some, but not as much as normal.  We shall see, but I'm betting we get blood again before we go home.  His central line is a little tough to flush right now, so hopefully we can get that fixed before we go home-- how annoying it would be to have to come straight back bc his line clots off.
Ridge got a tooth a couple weeks ago.  Bottom right.  The brother to it, bottom left, is workin on coming in.  And apparently so is the sister-- top right.  Brandon discovered that today.  So, when Ridge does something, he does it right.  Three teeth at once.  ridiculous.

go to crazydayphoto.blogspot.com to check out the newest craftiness.  there's a pic of sawyer, a hat that wasn't disastrous, a new bracelet, and a NEW craft for the Christmas season that some of you may not already own...and I'd be glad to make you one!
good day to you all!

Friday, December 4, 2009

goodie basket!

Thank you 91/01 Sorosis- Hollis- for the goody basket!  It was a hit!

more jewelry....and a little ridge update



Ridge got blood today.  he seems to be doing well!  we are still set to go home end of next week if all of our supplies are in.  We ordered the hgb monitor yesterday and paid for it...charged it....but people have been so generous...so it will be covered, if not by insurance after a battle ensues, then by the generosity of our community and our friends.  my mom's school's NHS had been raising money for a new mascot costume and a family in need.  They started doing this back towards the beginning of the school year.  Yesterday they presented mom with a check for Ridge (she had no idea all this time that the family was ours!)-- the check is just enough to cover the cost of that needed hgb monitor!  so thank you, weatherford!  Thank you EVERYONE who helps us out financially- but I thought that was a neat story- too good to pass up.

we are in the process of trying to figure out social security/medicaid/etc. to see if some of these additional costs can be covered with them. we shall see...

i just typed a lot more then the computer shut down. i don't even remember  what i had typed. oh well!

here are some pics of my recent adventures....email me if you want one/some/any/have requests...
needstobebusy@yahoo.com








Thursday, December 3, 2009

xray it is

Okay here's what we found out about the xray (if you are like "whoa, what x ray?  well, i briefly mention it in the post below this one, which actually came before this one...but ANYWAY, Ridge had another set of skeletal surveys yesterday just to check everything out).  Okay, so the "pneumatosis" crapola-alis is "stable" so no worries there.  the bone lucencies (i know i spelled it wrong)-- the bone LESIONS basically that we haven't been sure about this whole time- are they MLT? are they something else? who the heck knows?- anyway....deep breath here...they are notably BETTER.  why? how? the docs sure don't know. they sure weren't ever expecting that.  they were expecting nothing from them, or for them to get worse or cause fractures.  what what? they are BETTER?  hmmm?  how the heck?  oh, you and i both know how that happened.  one doc today said, "well...if they are related to the MLT as we believe the are...if THEY are lessening/getting better...perhaps that is happening to his other lesions.  We have no evidence that any of the other lesions are getting WORSE."  he didn't actually say it exactly like that i'm sure, but he did say something to that effect.  affect? i always get those words confused.  Anyway, I took that as good news.  of course it was delivered as neutral news, but i took it great.  also, they did a CBC for whatever random reason today even though he had one yesterday.  and well, his counts today were exactly the same as yesterday. super! 

so i don't know why RIDGE was so grouchy in light of all that good news.  Of course, maybe he was irritated like I was/am over stupid insurance/bills/ridiculousness that i don't want to accept.  doubt it.

happy? mmmm....notsomuch

ridge used all his happy squealy-ness up last night.  then he tossed and turned and fussed to be held all night.  then he was grouchy all day.  i'm zonked.

so the insurance company doesnt want to pay for our hemoglobin monitor.  so we got it ordered (a whole other fiasco) today.  good thing it's necessary...bc i wouldnt pay that much for something that wasnt.  i'm not typing well, ps, bc i have only 1 usable arm- baby is on my other one.  insurance also doesnt want to, isnt going to cover ridge's pulse oximeter monitor.  great.  apparently rental of those things is a couple hundred a month and the toe sensors are at least $45 each-- we go through 1 or more a week!  anyone know anyone wanting to get something like this off their hands?  i'm not worried-- people have been so generous-- we will be okay-- it just seems like a ridiculous amt of money.  but it will probably be cheaper to buy one than rent it.

my thoughts are sporadic.  brandon and sawyer just got here, so i'm checking out for awhile.  will post more as soon as i get a chance!  here's what's coming: the good news about the xray ridge had yesterday. i'll get to that asap.

Wednesday, December 2, 2009

trying to keep busy!!!

no ridge update.  but i've been finding some things to do--i thought i'd show you some more of what i've been up to- not a lot, but a few of you have requested things, so i am on it!  here is some of what i've done the last two days-- two of the earlier posted necklaces are on here, so, sorry to those of you who have already seen those!  I've had some emails/facebook messages of people interested in some of these items (THANK YOU).  If you see anything you like, or have a request, you can email me at needstobebusy@yahoo.com.



 (it looks like a bead is missing left of the pendant.  it isn't.  it wasn't.  it's hiding.  but this picture freaked me out so i double checked.)



This...is a bracelet. Made of buttons. I think it turned out way cute.

This is another one (below)...




I love this scarf.  It is already wrapped and secured w/ that button and can just be slipped over your head.  It's warm and snuggly and soft and, well...it's cute.

This scarf....is a wooly grey and is nothing fancy but would match a ton of stuff and is also very cute.  The picture cuts the end off-- it's just plain straight across.

See how busy I've been?!?!  I would love to find more to do-- so let me know if you are in the market for anything!

Sorry this post isn't about everyone's favorite baby (ok....maybe that's a little stretch)...I promise to post about him soon!

here we go again....

I hope not anyway.  Ridge's counts were great from 11/21 to 11/27.....then 11/29 his CBC was lower.  12/1 it was a little bit lower.  They ordered another one today to double check his platelet counts because he was due to have an MRI today.  His hgb yesterday was 9.0 and today it was 8.7.  His platelets were about the same from yesterday to today, and yesterday's anesthesiologist said he/she would be okay w/ the platelets around 47/48K where they were, but of course, today, the anesthesiologist on service today...said no. They had to be 60K.  We don't do platelet transfusions just to do them.  So we are not doing the MRI today.  And apparently, though the stools have not been black, Ridge is bleeding somehow/somewhere because why else would his hgb be dropping?  Yesterday he had one incident of spitup that had red in it- but not a lot of blood like we've seen before.  This is so annoying.  Anyway, he only has the one line going in his chest and that is for his meds.  He needs an IV in....and no one can seem to get one in bc he is so fat.  So pray that someone today (hopefully?) can get one in bc he is going to need blood in the next day or so probably.  No one has told me this but I see no reason why we should be hindered from going home because of this.  This will be under control in a couple of days so then we will be back to "normal"- whatever that is.

Anyway, say a prayer for Ridge and everyone who will be working to help out today!
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