i haven't pulled an all nighter in a long time. it was funner in college.

yes, i said funner.  i know, more fun is more correct.  or correct, period.  i'm just saying....

so here's the low down to get you up to speed--
Tuesday, Ridge had his 1 yr dr appt.  In size, he is off the charts...small.  He weighs about 16 lbs, and is 26 inches long.  perspective check: he is 1 yr old, and can wear 6-9 mo. clothes.  Am I freaked out? no, bc i can't make him 25 lbs overnight. i'm just giving you the report.  according to checklist information, he is behind in the facts that he can't walk, doesn't point, doesn't drink from a sippy, can't speak (except for mama), and probably some other stuff.  i'm extra not concerned about that, since he's like 5 months delayed on opportunity for those things anyway, since he spent 5 formative months in a hospital bed.  but now you know.

Tuesday, he got one immunization. I'm not necessarily pro or anti vaccines.  Ridge can't get live vaccines because of his steroid therapy.  So we got one shot.  He's supposed to get his final HepA at 15 mos of age.  IDK if that will happen, bc.....Wednesday, we found ourselves in the hospital with a hemoglobin of 7.7.  He was given blood once on Wed. and once on Thurs. and Thurs. night, we went home.  Record short stay for us.  Friday morning, his hgb was still 11, which is what it was when we left the hospital.  Friday night, a diaper caused concern, we checked hgb, it was 9.6.  To the ER we went.  at 11:30 pm, hgb was already 8.0. He didn't receive his blood until 2:30 AM, and I am certain he was close to 6.0 then, bc he was getting gaggy/vomitty, which happens when he is low.  So we were up till about 2:30 AM Friday night/Sat morning, then he started getting blood and the four of us went to sleep at the hospital (don't worry about sawyer being up at the hospital, awake that late.  he was partying it up with some leftover baby shower food that one of our favorite nurses got him.  he was happy as can be to be eating cookies at 2 AM).  I had to get up at 4:30 the next morning bc I was participating in a craft show that day in Noble.  So I pretty much got zero sleep, which hasn't happened in forever.  I wake up 1823487910 times every night to feed the baby or to his monitor going off, but I sleep off and on from about midnight to 9 AM, so i'm good.  but an all nighter like that was bru-tal. Anyway, Ridge got the blood that night. He got blood again Saturday morning around 10 AM, he got blood again yesterday evening around 7 PM, he's getting blood now at 10:45 AM on Sunday.  The bleeding isn't over.  This is by far the worst he's been in months and months.  No vomit yet, but he's wanted to at least once, and he did gag up a little bit of banana that he was eating, and up with the banana came red blood.  I can't stand it when it comes up.  It's gross enough and disturbing enough and wrong enough when it comes OUT, but when it comes UP, I just can't deal with it.  I CAN, and I DO, but I hate that.

So why the bleed?  If you haven't gathered yet, this disease is rare. It is random. And we don't know for sure why he ever starts to bleed. He HAS been immunized before, but dynamics were different/med doses were different, so I tend to think this immunization was the culprit (It wasn't a live vaccine, we know he can't have those)....but I could be way wrong.  So anyway, he is on transfusion number 6 since Wednesday.

Lord, I am ready for the day that we don't spend so much time in the hospital.  But I am thankful that we don't have to live in the hospital anymore.  No matter where we are, my prayer is for Ridge to no longer have these bleeding issues.

The other night, I got to share Ridge's story/God's story with a group of ladies (freaked out much? 350+ of them! I was NER-VOUS!).  The following evening, my friend Kelly, whom I have never met in real life, but right along with my friend Andrea, whom I have also never met in real life, I consider a lifesaver and someone who is an instant friend and who one day I hope to meet in real life, when our kiddos are stable enough to travel without us (me?) fearing-- ANYWAY, run on sentence....restart: My friend Kelly and her husband shared their daughter's story (of living with MLT) with their church youth group.  One thing she told me, later, on FB, was this :  It is hard to recap it all. I feel like I barely survived it the first time. YOu know what I mean? Man I do not want to go back to where we have been. 


A to the men!  I don't know how we made it through the first year with Ridge, but we all survived.  Right now, times are bleak.  But she is so right- I do NOT want to go back to where we have been.  Thank you, Lord, for bringing us this far.  Carry us some more, bc today is a dark day for us. 


Have a happy Mother's Day (I know, kind of bleak way to wish you happy mother's day, but I truly mean it....moms have the hardest jobs ever.)

winner!!!

while it is sooooo true that we love her, this contest, i promise, was soooooo not rigged- sawyer picked this name out of a clump of wadded up papers with names on them.....

the cute scrapbook goes to momma of 3, one of our favorite people....


VANESSA!

congrats, friend.  let me know if you want me to mail it, and where, or if you want me to bring it next time i see you.  whatever is fiiine by me.  fb or text me your address if i'm mailing it, though.


lots of you played that time-- thanks! i have one more prize ready but i will keep finding more! :)

miss montana's in the mail...so i guess i should give something else away?

Okay, let me preface this giveaway with the honest truth....not that there is really any other kind of truth....
i really secretly like/want to keep what i'm giving away.  yukon is the greatest-- at the beginning of each school year, they host something called The Breakfast.  Organizations/businesses around town sponsor a table/tables and serve the teachers breakfast and usually also hook us up with some sweet prizes/goodies!  This past year, I didn't get to go bc I was with Ridge in the hospital, but the year before, my friends and I sat at the CNW West table, which is where Sawyer used to go to daycare, and we won something super great if you are a mom.  That's why I don't want to get rid of it.  But I'm not going to lie-- I have/had every intention of using it, then we got a Mac, I've been digital photo booking everything, plus with Ridge in the hospital so often and my sewing/crafting other things, I just haven't gotten a chance.  So please know, it is very bittersweet to be passing this along to you!  I think CNW would agree it would be better that someone be actually getting to use it than it just sitting on my shelf going unused, me looking at it every day thinking, I SO need to work on that!  BUT alas, let me just say Bdawg and I have been married almost seven years....and I haven't even finished one of these from our wedding/honeymoon yet.  So you gotta know, I don't think I will ever get around to it, no matter how much I want to and no matter the fact I think it's just about one of the cutest things ever.  So, friends at CNW who read this-- please know, I LOVE LOVE LOVE this prize.  LOVE it.  That's why I know someone else will too, so I gotta pass it on, share the love, pay it forward, whatever you want to call it.  This is so not a trash to treasure giveaway (hannah montana)....this is a treasure to treasure giveaway, IMO. 

Here's what you're playing for:

In this box, which is cute enough to play for, in my opinion, is a scrapbook, a couple of sets of stickers/decals (idk scrapbook lingo, never learned it), some ribbon, flower petally things, stamps, ink pad, fringe-y stuff, cardboard letters, little pushpin/brad things....idk what all, but it's ALL cute.  and it's pretty big....the way it's packaged right now, probably about 24" high and 18" across, but I'm not gonna lie, it will probably be taken out of the packaging, put in the adorable box, and in a bigger box, when I mail it.  So if you're wanting it all cutesy packaged like it is in this picture, you might want to reconsider entering!  Anyway, the colors are a sage to lime green and a corally reddish pink.  other than the flowers, I think you could use it for a boy or a girl, but that's my opinion.


To enter, all you gotta do is leave a comment.  If you can't comment on the blog for some reason, which I still can't figure out, bc multiple times I've tried to comment as anonymous, and it works every time....so I don't know what the deal is, BUT if you can't comment, you can always gain an entry by emailing me.  I guess since not everyone can comment, I will only allow one entry per person, either by email or by comment.  The winner will be selected whenever we have time to select them, and it will be by random selection via my 3 year old.  Happy winning- bc I think this is a good prize! GREAT prize!

xoxoxoxo (esp to you gals over at CNW!)

breathless scumbag

I don't have a good title today. I don't have a lot of time today. Dinner's in the oven, I have a double date with two trig students in about 45  minutes to crank out some mega trig before their next test, and I have a pile of baby shoes- pile is an understatement!- on the table begging me to sew them.  Little ones, you will have to wait, bc I need to make some serious jewelry for the jewelry party this weekend and the craft show next weekend.  May is CUH-RAZY for me.  I think we have something every single weekend.  Busy busy.  But it's good to be home.  We spent a brief amt of time over Ridge's bday in the hospital.  We had fun, and I have several pictures to post. But not now.

Here's where I'm at right now: the same place I find myself pretty much all the time through this new life of ours...breathless. Somedays in a good way, lots of days in a notsogood way.  I  am out of breath from running all over tarnation- or at least from hospital to home to hospital...I am breathless from fear of "will this get ridge sick?" I am breathless from wondering, "do we get him his one year vaccinations or not? will that set him off? when can we try to come off the octreotide and get that stupid central line out of his chest? what if it doesn't work? will our life ever be normal? why why why?" breathless.

i am breathless when I stop and think of provisions made for us throughout this whole ordeal. breathless at the opportunities presenting themselves to us every day.  in love with how God is allowing me to make some fraction of my paycheck back through my business, which will soon be official when i fill out the tax forms.  i have always wanted to earn a living, or earn a something, from a talent i have-- i'm a crafty one of sorts....and i like being able to make fun cute things and let people buy them.  i am breathless at the opportunity given to me this past week by a local boutique being willing to sell my things there-- (thanks! xoxo!) i am breathless at my friend andrea, whose little boy also has MLT, and her words of encouragement, promising things WILL get better and we WILL be able to live a normal life one day.  i can NEVER hear her say that enough. never ever.  i am breathless at how much those stinkin nurses and techs love ridge...and even silly sawyer!  i am breathless at some of the friendships i  now have simply bc my child lived on the 8th floor of the hospital for so long the girls there are not only my son's caretaker, they are,well, my friends.  i can't type about that any more, bc i will overflow with tears. but 8th floor ladies, you gotta know there's lotsa love in this momma's heart for you. 

i am so unworthy. i am bottom of the barrel scum most days, but God is continuing to take care of us.  and when i am having trouble remembering that, He reminds me.

yeah....so that is all.

goodnight, fellow scumbags...or fellow non-scumbags.  love to you all!

hannah montana drama

Well, a couple of you almost convinced me to keep the movie. But, alas, we aren't keeping it.  To say thanks to all of you who daily read the blog, we're giving back...you know, "one man's trash, another man's treasure" type stuff.  And the winner, picked randomly out of a hat, proverbially speaking, by Sawyer, is....

Courtney Horne.

Courtney, remind me your mailing address and I will get that out to you as soon as I can! email me @ seesawridgeproductions@yahoo.com or you can just facebok it to me.


CONGRATS!:) don't worry. i have at least 2 more prizes.  More on that soon.

Dear sweet baby Ridge....

One year ago, you entered this world.

For nine months, I carried you...felt you kick and flip and hiccup.

I let you grow as big as you wanted (8 lbs 12 oz...)

I loved you before I ever saw you.

And when the doctor handed you to me, my first words, "hi, ridge!" were spoken through tears, and quickly, "he looks EXACTLY like sawyer!" followed.

You entered the world on your granddaddy's birthday, a special day indeed.  He would've loved you to bits.

You entered the world quickly, but not without being noticed-- through every bit of strength that epidural could muster, I still felt those contractions.  After they finally gave me the strongest whatever they could give me, the pain stopped, you arrived, and I threw up in front of your Aunt Binet'.  

You were born with lots and lots of black hair, and though your eyes were blue at birth, they soon turned brown...I'd always wanted a brown eyed baby.

Your daddy and your brother loved you from the start.  Sawyer wanted to name you Hollywood, and was disappointed, at first, that your name was not, in fact, actually Hollywood.  But he adjusted and he loves you dearly and is a great helper and playmate for you.  Your daddy is a tremendous baby holder, and you always sleep best on his chest.  You've looked just like him from the get-go.

  Here you are, one year ago (tomorrow)....one of the greatest, happiest days of my life.

From that day forward, we have loved you.  Not without trial.  Not without frustration.  Not without pain and tears.  But we have loved.  We will continue to love.  Every minute of every day with you is a blessing, and though your incredible spoiled nature (thanks to your parents and all the nurses who love you dearly, as well as the rest of your family members) makes it nearly impossible to ever get anything done without holding you, you are a miracle among us.  Not until six weeks into your life did we even have any inkling that anything was amiss in your little body.  And oh, how most every moment since then has been bittersweet.  Hospitalizations are always a pain, because we want you home, not in the hospital.  But at the hospital, some of the people who have come to love you and come to defend you, jump at the chance to take care of you.  Being home is always such a blessing with a small lining of fear...how long this time? Will you be bleeding tomorrow?  Will you get sick if I take you here/there/wherever?  

And please know, sweet baby Ridgey, that you are loved by everyone around you- family, friends, nurses, community....

And you have a mama who couldn't be happier that your first, and only word, is.... "mama".

Oh, Ridge....never could we stop loving you.  I carried you in my belly for nine months. I will carry you in my heart for all my lifetime.  And one year ago, on your BIRTHday, you were covered in love at the hospital. This year, on your first birthday, you will be covered in love at the hospital.  And it, too, while bittersweet, will be one of the greatest, happiest days of my life.  Your momma loves you....with all her heart, and, as Sawyer says, with all the corn.

Here you are, about one year from your birth.  My sweet baby. 

Happy first.

i've got a present....for you! or you? or you?

Now, I'm going to admit I didn't do an A+ job of it, but Monday, I cleaned out the garage.  I did throw quite a bit away, but anything on shelves or in boxes pretty much got to stay where it was.  HOWEVER.....some things were salvaged.  Not for me, but for some of you.  Seeing as to how this is the week of Ridge's numero uno birthday, and we have toys coming out our ears, and gifts galore....I don't need some of this stuff.  So the first item up for grabs is sure a funny one.  So here's some background:

We've been in the hospital a LOT since July.
Most of that time , I was the parent with Ridge, bc BDawg had to be at work.
When neither of you are really at home, things get overlooked.
Which is why I even have this prize to begin with.
We USEDto be members of something called....The Disney Movie Club.  It was great.  Except for the fact that if you didn't want the movie of the month, you had to call and say you didn't want it. Or send in your form and check the box that said you didn't want it.  And if you neglected to do those things, you got the movie...AND paid for it.  No more of that malarkey.  We cancelled that right quick two years later when we'd forgotten to take care of that a few times.  Most of the movies we received through this little trap DMC had set for us our error are movies we will watch, do watch, have watched, whatever.  So they were like presents we didn't really need to buy but we bought them, like it or not, so we were happy.  However....I was not aware of our (probably) LAST accidental DMC purchase.  Until I cleaned out the garage.
It was with great splendor and excitement I reacted when I saw the corrugated cardboard box.  I knew there was a movie in it.  Both boys were home with me that day, so I was super excited to have found some leverage for the 3 year old.
The package was dated sometime in November.  What a treasure! Six months in the making!
But our loss is your gain.  Because God has given me two wonderful young boys.  They will get older. But unfortunatelythankfully, they will never turn into the tweenage little girls who would be interested, ecstatic, super happy happy happy to watch this:

It's all yours, people.  Leave a comment.  Or send me an email.

I will put all your names in a proverbial hat, Sawyer will draw one, and I will send you your prize.
Don't worry. It's new. In the box. Still shrinkwrapped.
Happy....whateverday to you!

(Contest open until I close it, and anyone can win, family is not excluded, although I'm most definitely certain none of my immediate family will be needing THIS).

i suppose it's time for an update

wow.  not a lot to say, but i know it's been FOREVER since we've posted anything too new or pertinent here.

so here's the newsy notes:

1. Ridge is home. We were in the hospital last thurs (4/8) through Monday (4/12) because he was having a bleed related to the cold/congestion/respiratory virus/whatever he had.  strange to think that a cold would make someone have GI bleeding, but this disease is a mystery.  It is of utmost importance we try to avoid Ridge getting sick.  Which is why at the sign of any illness any of us have been around, I became a total freak.  It is so hard to decide whether getting out for this or that is even worth it when something so minor can set Ridge off. I think he got two transfusions this time.  His hgb isn't super high, it's in the 9's, but we are home anyway, because all we'd be doing at the hospital is sitting and waiting.  So we're home.
 2.  Ridge is on the last four weeks of his steroid wean, providing nothing major happens in these four weeks (bleeds/illness/vomit/fever/etc.)  So hopefully, in four weeks, he'll be off the steroid, and be able to function a little better under stress/illness.  Who knows.  His steroid, currently, is in tablet form.  We mix it in with some baby food. He's not dummy.  He knows it's in there. And steroids taste nasty.

3.  Ridge is small, still. Hopefully as he continues to come off the steroids, he will grow.  We try to feed him as much as he'll eat....He will have to take pediasure instead of whole milk at one year of age, in order to get some complete nutrition, plus several cals/ounce.  He hates the pediasure.  He just wants to be breastfed and eat baby food.  It's frustrating that he won't take it.  Pray that he will respond to it, or that we will be able to give him the whole milk with supplementation or that he would just start to grow!  He's a tiny thing.

4.  He's a tiny thing who will be ONE year old in SIX DAYS!  Unbelievable.  In some ways this year has flown by and in other ways I feel like I've aged ten years and that Ridge should be five by now or something. 

5.  Sawyer is a big boy.  He is no baby anymore. He's a great helper and mostly obedient.  He is good at going to bed most nights, and is super pumped that tonight is pallet night, and that Cox On Demand has all THREE of the Teenage Mutant Ninja Turtles movies on Demand.  We've gone through two of them, tonight we'll be watching numero tres.  Uncle Garret would be so proud. :)  I am working with Sawyer at home, trying to teach him to write his name.  We worked with the letter S some this past week and he was a good and patient student. I don't know how he is for his super sweet teachers at school, but for me,while he can have an attitude at times, when we were "learning," he was soakin it up.

6.I've been busy.  I am about to post some photos over here:  crazydayphoto.blogspot.com
I am having a jewelry party at the home of a friend and would-be coworker if I were at school this year...that's in a couple of weeks. I've got a couple more lined up during the summer.  I am also going to a craft show in Noble May 8th.  So those things are exciting.  It's hard to find time to get everything done, but I love my work.   I've also been overly privileged to be asked to speak at Southern Hills Baptist Church May 4th. I don't have a lot ready, because our life changes so rapidly, I feel I will probably just have to let loose from the heart of the moment that night.  It's been a long time since I've shared in a large group, so I am excited and nervous.  I am excited to get to share this testimony of our lives....I am more excited for Ridge to one day be able to stand and share his faith and his testimony of how God took him through something so ridiculous as MLT....and I pray and hope every day that when Ridge stands before people, a miracle in front of my own eyes, that  he will not even have any recollection how scary this beast of a disease can be. 

7.  I have some stuff to type about b-dawg and more updates on myself as well, but it will have to wait for now.  Gonna upload some pics and get back to work before pallet night starts!

wordless wednesday

{more pics at the photoblog}

easter easter!

It's easter Sunday.  12:16 PM.  Here's how we've celebrated today, so far.

A few days ago, we colored eggs.  You can see photos of those eggs here.

The Easter Bunny came to visit last night.  I don't have photos of that.  Ridge got a mega blocks truck that has a few mega blocks, not many, bc Sawyer has a gajillion, and bc we don't need any toys.  Sawyer got lots of candy and Silly Putty-- two colors of Silly Putty...which he promptly mixed together against my instructions.

We tried to go to church. We got all dressed and ready, pictures later, i don't have energy to upload them now.  Everyone looked snazzy.  We got to church, fellowshipped a bit, enjoyed seeing everyone, enjoyed singing hymns about the risen Savior....then Sawyer couldn't be still.  couldn't be quiet.  so we went for a walk, me and the boy, and had a talk, me and the boy, about being quieter in church.  during said talk he sits down and a strange odor permeates the area.  time for him to try to potty. i'm exasperated by now.  he won't potty.  we go back to the church service.  sawyer is better behaved.  ridge starts to cry. brandon takes baby out trying to get him to sleep.  the message begins.  all things go quiet.  except....for the loud RIPPING sound coming from sawyer's backside.  It was NOT his pants ripping.  I quickly remove him from the room, and now all four of us are in the foyer area.  Ugh. it was a disaster.  So we left early.  It was a downer for me, I was ready to be back at church w/ our friends, our church family. I'm sure it's funny.  But it isn't right now.  I left out the best part-- me catching Sawyer with his finger in his undies TWICE, "checking for poop."  WHAT? who the heck taught him THAT nasty move?  dis.gust.ing.


The Easter Bunny hid Easter Eggs while I finished making lunch. We shall go find them a little later. 

Lunch....here's the best part about spending holidays alone.  Granted, home cookin' from our mommas and grammies would be best, or if i had enough energy to make a big meal, that'd be great too...BUT here's the greatest thing ever.  I'm married to a country boy. Not that I'm a big city girl, myself, but moreso than my spouse (obviously I'm more of a girl than him, I mean the big city part).  ANYWAY, he loooooved beans and cornbread. I like it so so, but it's not my fave, and I'd never pick to have that.  SO we rarely have it.  But bring on his birthday, or Christmas, or Easter...and that's what he's gonna ask for.  So what normally would be in our reserves for poorer times in life are reserved for holidays.  AT least for this season in our life. And that's perfect with me.  Easy easy stuff.  Plus Sawyer wanted brownies for dessert, so I made those...and no one was in here, so I took a spatula to the extra batter and did away with that all on my own.  It was necessary.

this afternoon brings hunting of eggs and planting of flowers and a garden.  wahoo.  happy easter, world. 

it's friday, but sunday is comin'....

How deep the Father's love for us
How vast beyond all measure
That He should give His only Son
And make a wretch His treasure
How great the pain of searing loss
The Father turns His face away
As wounds which mar the Chosen One
Bring many sons to glory

Behold the man upon the cross
My sin upon His shoulder
Ashamed I hear my mocking voice
Call out among the scoffers
It was my sin that held Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection
Why should I gain from His reward
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

Why should I gain from His reward
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom

i have lots to say but my refrigerator is smelling up the room right now....

Brandon's home for lunch. I was gonna try to get a post in while he's here.  He opened the fridge. whatever is in there is stinking it up. gag.  nothing old is in there, so i have no idea what it could be. i don't know if i can handle it.  sick sick sick.

Icko.

Okay, moving right along.  If my enter key will work.

My college girlfriends and myself are reading a book together right now.  Or I think most of us are reading it anyway.  Anyways, my pal Weird Emily sent us all a copy.  And I'm delayed because of our last hospital stay, but even though I'm behind some of them in  my reading, this book is just great.  It's by Jane Rubietta, and it's called "Come Closer."  Lots and lots and lots of good stuff in it.  Last night, while I was actually getting to enjoy a bath, sans a three year old with a raisin up his nose, and sans an almost one year old splashing around from the sidelines, I read the next chapter.

I'd just shared a few things with Bdawg, and this chapter was perfect for those issues, as well as all the junk we're facing/we've faced the last year.



stupid enter key. i guess we need a new keyboard. anyone got one for an imac that they are ready to get rid of?  it doesn't have to be wireless, ours right now isn't. 

maybe the problem is with blogger, not the keyboard. idk.

Anyway, so last night I was reading a chapter entitled "Come for relief."  Let me just share the good stuff, or the stuff that was the "goodest" to me.

"some days are like [this]: plowing uphill hauling a watermelon of fear, sin, regrets, and other leftovers.  I'm not much fun on those days."

"Heavy-laden.  Everyone is, and it reaches far deeper than tiredness or too much to do.  With all the weights we carry about, we should be professional body builders competing in the Ms. Olympia contest.  We feel it in burning shoulders, stiff necks, aching backs, breaking hearts, and thundering sighs.  The weight wedges itself between us and our loved ones as we wonder, "How can I possibly give adequate love and care to these people right now?  I haven't an ounce of emotional energy for them."  So we avert our gaze, pick up our packs, and keep trucking."

"What do you gain by hauling around those weeds?  Colitis.  Migraines.  Fear of intimacy. Loneliness and isolation. Unhappy children.  A disgruntled spouse."

" [God sent his Son] to show us how to live, really live, in the midst of a world that demands perfection and performance."


From the Message Bible, which I'm not a huge fan of, but is interesting to read sometimes: "Are you tired? Worn out? Burned out on religion? Come to me.  Get away with me and you'll recover your life.  I'll show you how to take a real rest.  Walk with me and work with me-- watch how I do it.  Learn the unforced rhythms of grace.  I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly."  Matthew 11:28-30

So I'm reading that, and I'm wondering, if Jesus won't lay anything ill fitting or heavy on us...on me....where the heck does it come from?  He's willing to take our burdens.  He WANTS us to give them to him.  I found great despair and great hope at the same time in this thought.  I know God didn't GIVE us these hard times, but he ALLOWS us to go through them.  yeah yeah yeah, consider it pure joy....these trials are a testing of your faith....I know.  It's a hard pill to swallow that God won't lay anything heavy or ill-fitting on me.  I know, the Message isn't a translation, it's a paraphrase, so they might have gotten it wrong there, I don't know, I haven't done the original language word study with my Zondervan concordance and I probably won't.  Anyway, God won't lay it on me?  Well it's there.  And it's heavy. And I promise it's ill-fitting.  So while those words tasted bitter in my mouth, truth was sweeter- God DIDN'T lay that on me.  I don't know why under heaven he has allowed us to walk through such fire without totally taking it away, bc that's what I want, I want it to just go away.  But someone else created this ill-fitting circumstance.  This thorn of the flesh.  All I can do is try to cast my burdens onto the Lord, though, bc He is strong enough to carry them, and I promise you I am not.  Jane Rubietta paints a picture of hefting all of your concerns onto a bowling ball and then throwing it down a giant hill with a huge thrust of energy.  How relieving that would be.  That's how we are to cast these concerns on to God.  But as I was reading that, I kept thinking, I can't.  I CAN'T.  I don't know how to give it to him.  So I'm reading a little poem at the end of the chapter.  It states :"Give it up. Give it over. Everything.  Whatever binds you, whatever stops you, whatever weights you haul around with you.  Pass me the ball and chain and let me carry them for you while you breathe deeply." Later she quotes Galatians 5:1 "It was for freedom that Christ set us free; therefore keep standing firm and do not be subject AGAIN to a yoke of slavery" (emphasis mine).  And then she asks us to imagine casting all the junk we're carrying onto the bowling ball and hefting it over the edge....and I note, in my book, "I don't know how to let it go."  So then I read further, where she has written a prayer...I'm kind of mumbling along, trying to mean it, but not really feeling it.  Then I get to this: "My bag overflow, and the bottom is ripping, and I long to set it down.  But I am afraid to let go, and I am afraid I am too weary, too discouraged, to even come to you, [God].  Could you, please, come to me? Amen." 

So that is what I asked.

Are you weary?  So much so that you just don't even know how to relinquish those worries?  Me too.  So I hope this was comforting, uplifting, whatever to you. because it was to me. 

i have the most boring life on planet earth.

Okay, there are a bajillllllllion ways I could start this post.  But I choose to start it this way:
   For every one of you who has ever said I should write a book, I used to think, "No way."  But tonight, the scales have dropped from my eyes, and I have seen the light....the light that has exposed the truth-- I have enough material to write a book.  Any gaps that baby ridge's story has are EASILY filled by sawyer.  and gaps being filled is an excellent way to describe what sawyer does.  I'd also like to say, this post is going to make you laugh.  Possibly spit-milk-out-of-your-nose laugh.  I warned you.  In a very appropriate phrase, I warned you.
  before i go on, if you want to catch your breath and gain a lot of composure, bc you are about to lose it with laughter, check out the photo blog's new pics.
   ooooook.
so, tonight, after my sister in law and her hubs left our house to head back to tx, i finished proofreading a senior paper for our pastor's son.  normally, when i finish a project on the weekend, i move on to another one.  but tonight, i wasn't feeling it.  so i held ridgey, and kept feeling.....i can't believe it.....bored.  for the first time in a LONG time, i felt free enough to feel bored at home.  and while i am thankful for that, i also wanted to do SOMETHING.  now, i have a lot to be doing, but none of that was my priority tonight. i wanted to hang out with the fam.  so...i mentioned, several times, bc i was competing with march madness and two children, "I'm bored."  finally, bdawg passed me the remote and said i could rent a movie or whatever.  i fed the baby instead and decided that gave me at least an hour and a half before he'd eat again, so i was gonna take a long bath all alone....that's like my life long dream.  well, i always take a bath alone.  but just because no one's in the tub with me does not mean that no one busts in the bathroom saying, "MOMMY!" or "he won't stop crying, i gotta leave him in here with you." or whatever. And I get it, that's part of being a parent. I can take it.  But tonight, it looked like there was hope on the horizon.  I lit my little candles, got my book all ready, drew up the bath water.....i was ready to go.  I got all settled in, but before I did so, I told Brandon I'd be out in a while, and if Sawyer wanted to finish that trail mix in his bowl on the bar, he better do it. 
  i had been in the bathtub all of about five seconds fifteen/twenty minutes (I know, call me a lush if you want, but if i'm gonna be in solitude in the tub, i could sit and soak for two hours.  i like to read, i like to nap, i like to just sit and have QUIET!  ask my sister in law who endured a trip back from Babies R Us today-- i took the scenic route on purpose and enjoyed every minute of it-- not only bc I was with her but bc I was WITHOUT kids for awhile. i love the boys, i do. you know that. but....well, no buts. i'm just sayin, i like hanging out with adults, too.) SO anyway, in busts BDawg with the Ridger.  I said, "You have GOT to be kidding me." and HE said, "No. Tell that to the other one who just stuck a raisin up his nose."  anyway, I responded, "I guess take him to the ER if you can't get it out."  So Ridgey splashed his hand in my bathwater.  Ridgey ripped up the magazine beside the bath and put pieces of it in my bathwater.  Ridgey was all smiles and livin it up.  The whole time I'm hearing some sort of barbaric yelling going on in the other room and I am trying my hardest to imagine calm....serenity....a nice relaxing bath time.  yeah yeah yeah.  so i finally get out, it's quiet, so i assume brandon and sawyer have headed to the ER.  So I start getting ready for bed, and bdawg busts in with Ridge's meds for the night. I ask "did you get it?" He says, "no, but I gotta give Ridge these meds" so I say, "i'll give the meds, you get the raisin." To which I remember, he's already taken the tweezers (eek!) and been unsuccessful...what's he gonna do?  I'm the queen of google, but my husband isn't the King of it...but this time, he came through- he said, "well I read you're supposed to pinch one nostril shut, breath in their mouth, and hopefully it will blow out the other nostril.  So i've done that several times, but he keeps breathing it back in.  I could see it, but now it's so far in there I can't see it at all."  So...I sent him away. I gave Ridge the meds, I was all ready for bed....so Ridge and I just chilled in our bedroom, looked at some old pictures, facebooked from the ipod....just hung out.  All the while, I'm hearing things like, "stop breathing it back in!" and other yelling I can't decipher.  Finally, Sawyer AND Brandon come in the bathroom/bedroom.  The raisin is still MIA.  So we're discussing what to do.  I suggest ER, Brandon says, "well, apparently this is pretty popular (not that I doubt that), and raisins top the list." I told Sawyer he's gonna have to go to the hospital to get it out, and he says, with a huge look of terror, "Are they gonna have to cut me? are they gonna cut my nose?" the tears are in the works, and I quickly do damage control with "no no no- no cutting! it will just be scary, but it won't really hurt."  to which brandon has to apologize because apparently in that barbaric yelling, things like, "if you don't be still we're gonna have to go to the dr. and they are gonna have to dig through your ear and cut your nose off to get that raisin out." were said.  So, with good reason, the kid is terrified.  Okay, crisis averted. So I look at sawyer and I say  (you better get ready for this, people), "WHY did you put a raisin in your nose?" and without missing a beat, he replies, "I thought it might tickle." pause pause pause (while brandon and i stifle our laughter bc we don't want sawyer breathing too much and getting that raisin stuck somewhere) "but it did NOT tickle."  
i have one funny kid.
Bdawg and sawyer left for the ER, exam was done on the kid's nose by two docs, no raisin to be found.  conclusion: he probably swallowed it.  watch for signs of infection in the next few days.
my conclusion: sawyer wanted the insurance company to know we had another kid.



laugh it up.

finally have an update....

on the photo blog.  

The reason that's in magenta is because you can click it to go see that update.  But you probably knew that.

better!

finally! friday to tuesday....and i finally feel ALMOST back to normal.  i'm trying to type this blog while dancing to old school new kids on the block and keeping ridge bouncing in his exersaucer....he's still getting mad.  we'll see how far i get.  i look like an idiot, i'm sure.

Ridge has a nasty cold, really snotty.  hopefully this will not cause him to have a bleed.  illness often makes these MLT babies/kiddos bleed.  I've been wearing a mask and sanitizing my hands like crazy for the past six days or so.  he doesn't seem to have caught the gi issue i had.  Ridge...has the wave down.  He can wave wave wave.  He likes to bounce. he likes to stare out the window and yesterday he thought it was hilarious when he was INSIDE looking OUT the window-- because i was OUTSIDE cleaning the windows, looking IN.  and he was laughing it up.  this morning we went on a long walk outside in the fresh beautiful spring air.  a little sun.  a little sprinkles.  a lot good.  he finally crashed after about an hour of walking.  good for me. good for him.  my spring flowers are working on blossoming...if they can jump out from all the leaves on top of them.  i love spring.  ridge turns one a month from yesterday.  he can't talk yet, but he jabbers a lot.  so i guess he CAN talk.  but nothing i understand.  we have been avoiding public-ness for a long time bc of germies/illness, which means even church.  but with easter coming up, i think if we are all well and not at the hospital, we will try to don our new easter duds and go celebrate with our church family.  by nature we aren't an Easter/Christmas only church going family-- we are an every sunday, try to be there for most things, family.  so this disease and low immune system of ridge's has really been odd in that respect.....sorry that paragraph just rambled rambled about so many different things.

sawyer is doing well.  i'm praying every day we don't bring any bugs home (as in, viruses) from school....i've recently learned of a family with a little girl about 3 months younger than Ridge with MLT and they also have 2 other older children.  They have begun homeschooling their kids to limit the amt of germies that come home.  Seeing as to how sawyer is only 3 (almost 4!) and will only be in pre-k next year, we are all signed up and enrolled and hoping for a pre-k slot, but also praying about homeschooling.  for those of you who don't know, I have teaching certificates pre-k through 12th grade.  i need to renew them, i think....reminder.... anyway, i am beginning to wonder if i did all that studying and prepping to teach lower grades for a reason-- because as far as public school goes, high school has my heart.  so i wonder-- i don't doubt-- God knew this day was coming....anyway, i have great faith in our public school system, and i long to be back at work, but not yet knowing if i can do that next year, or the next....or at all  (i am trying to have faith that it WILL happen, i WILL be back in a classroom working with highschoolers in AP calc....YUKON high schoolers...bc there's nowhere else i want to be!)...anyway, this is just something we are praying about.  it will seriously cut the germs down by multitudes in our house, and i would get to spend time with sawyer that never before would i have gotten to spend with him, since i would not have chosen to be a stay at home mom.  who knows- i'm not saying it will happen, i'm just saying i think it's a great thought.  so keep us in your prayers! sawyer's doing well.  he seems to be outgrowing (for now, i know) the rebellious stage and is pretty much obedient most of the time. he loves to hug on me and scratch my back and lots of times over the last several days has told me he's sorry i'm sick.  he loves picking out his own clothes, so i've rearranged his closet where he can reach his school clothes  (picture this: sweatpants with a church shirt...bc this was frequently happening).  he told me the other day, "when you get better, and aren't sick anymore, we need to get the clothes out of my closet that are NOT cool."  WHAT?  how does HE know what's cool?  so i promised we would. i can't WAIT to see what HE says isn't cool...i'm sure the Toy Story shirt will definitely be cool.  whatever kid.  :) love that boy.


so that's not a big update.  we're doing well today. ridge goes for another pentamidine injection tomorrow. pray that goes well. we stop his octreotide for an hour to do those, so it's a tad nerve-wracking to me, but last time it went great.

take care!

spring...BREAK?

I don't know how much of a break any of us got around here this spring break.  I am not yet back into the swing of things being home.  We came home from the hospital on Wed. afternoon, I worked on jewelry and an apron yesterday while daddy and Ridge watched March Madness and Sawyer went to the zoo with Gibby, et al. I wasn't feeling great yesterday and by last night I knew I was really not feeling well...at all.  I climbed into bed with Ridger, trying to avoid contaminating him, and around 2 AM I had to go lay on the couch.  I woke up several times in the night, and while the thermometer assures me I didn't have a fever, I know I did.  So I stayed in bed all day.  I germ-x'd my hands a gajillion times and wore a mask when I fed Ridge.  I am pretty sure I have the same exact thing I had two weeks ago, the same exact thing that landed Ridge in the hospital, at least that's what we THINK landed him in the hospital.  So pray that I get better, but mostly pray that Ridge doesn't catch this.  I hate going to the hospital. I hate living with this.  I try to keep a good attitude, but I am really in a place right now where I don't like having to have this abnormal life.  It's swallowing me whole it seems and I just want everything to go away.  So please pray we have another good stay at home. Pray Ridge will be healed of this stupid disease, and pray that someone somewhere out there in this day and age will please find a cure for this ridiculous disease.  We have so many resources at hand in our society, and in the world at large.  We have great minds all over the world working to find cures for cancer and other diseases that plague many, and I don't doubt that one day, hopefully, they will.  But MLT isn't a known disease. It isn't popular. You probably won't ever hear of another kid ever that you actually KNOW having an MLT diagnosis.  So it probably doesn't rank uber high on the list of diseases we need to find a cure for.  Pray for understanding of the makeup of the disease, the way it works, and how it could be treated.  What Ridge is being treated with now is managing the disease, but he is on some meds that he probably can't be on long term.  Well, he CAN if it's choose that to live, but I mean, things that are less than ideal.  This isn't normal to me yet.  Ridge is almost 1 year old, and this is still not normal to me yet.  Maybe it's because I'm sick today or maybe because I'm tired or maybe both or maybe something else completely, but I am just not able to shake it today.  I want my son to live a normal life. I want him to be free of this disease.  I want the other 30 kids suffering from this to be free of it as well.  I want it to be over.  So please pray for our peace, please pray for the doctors and great minds out there to find a medicinal cure, but if you haven't prayed this in awhile, or if you pray it every day- please, tonight, pray for a miraculous healing in our son's life.  I know God doesn't have to give us that.  But I'm asking you to pray for it anyway.

xoxo-
the carys

what a life

Here's the low down on what's going on in the Cary household.

Ridge has been having a rough go of it.  Black is back, and he threw up once yesterday.  Hemoglobin doesn't go up more than 1 gram after transfusing, and we're used to 3 or more grams.  They aren't giving him a lot of blood, which is also a little annoying.  But there's probably a good reason, but I know he's received more than this much before....After transfusing, he is dropping his hemoglobin rapidly again.  Today, however, even though his transfusion only took him from 7.9 to 8.9, and his first morning lab he'd already dropped to 8.5, he has stayed at about 8.3 all day, which is new.  His pneumatosis intestinalis is back but didn't get worse from yesterday to today...this is still concerning, however.  If he does not stop bleeding, and if the pneumatosis gets worse...or maybe not and, maybe OR...he will have to be NPO (no food by mouth) for 1 to TEN days and on IV antibiotics and increased octreotide.....scary times, friends.  we don't wanna go there.

Sawyer is sick with a 103 degree temp and a sore throat.  My throat has also been sore, but I have a gigantic ulcer I think to blame on the upper inside of my cheek.  I also had some bad tummy bug or ate something wrong yesterday and was sick through the night and part of the morning.  Just awful.

Today at school, a lot of teachers, as well as Sawyer's class (which he couldn't attend bc of his outrageous fever), all wore their TEAM RIDGE shirts. A friend sent me some pics via email- it was good to see.

I have had  a hard time being separated from family this go round...all 4 of us should be together, no matter where we are....and it is hard that we are all sick except brandon and we can't really be together.  I've definitely had some meltdowns in the last couple of days.  Meltdowns for missing Sawyer and missing Brandon, and missing being home and being normal.  Meltdowns for having to live with this in general.  I know we have friends and family who will do anything we ask of them, so this next statement won't sound logical...but this road is so lonely.  We are blessed with people who pray for us and with us.  With people who would, and do, take care of Sawyer, or bring us meals, or do pretty much anything we ask.  With a community and with coworkers who rally behind us.  But it's still lonely, because for all of you good listeners out there, I know that even though you try and even though you want to, you can't understand how this all feels. If that sounds unappreciative, please know that isn't how I mean it- you bend over backwards to love us and to be an ear for us, and to let us cry on your shoulder or yell or vent and you are understanding.  And I couldn't make it without being able to have these meltdowns to some of you.  I just know that before living through this, I didn't know a family's pain and desperation in situations like this-- yes, I hurt for them, prayed for them, and would've done whatever they asked of me.  But I couldn't feel their pain.  And I guess, I am grateful that most of you can't.  It's hard enough to feel this for my child. I guess I wouldn't want to have to feel this despair (at times) for every hurting family- it would be too much to handle.  Anyway, it still gets lonesome.  But for all of you who go the extra mile for us, know you make it much more bearable.

Music has always been able to speak my thoughts better than I myself can speak them.  Tonight, as I was driving back to the hospital, I heard this song, which I'd heard a bajillion times before but never really listened to.  Totally how I feel right now.  Verbatim.  So I will leave you with the lyrics, and I will change my playlist so you can hear it.

Thank you for the love.  Thank you for the prayers.  Thank you for being givers of hope for us in moments of my lackluster faith and my despair.  You are Ridge's cheerleaders, and we couldn't walk this road without people like you.

xoxo


Hold My Heart, Tenth Ave. North

How long must i pray must i pray to you

How long must i wait must i wait for you

How long 'till i see your face

See you shining through

I'm on my knees

Begging you to notice me

I'm on my knees

Father will you turn to me yeah?

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

I've been so afraid afraid to close my eyes

So much can slip away before i say goodbye

But if there's no other way

I'm done asking why

'cause i'm on my knees

Begging you to turn to me

I'm on my knees

Father will you run to me yeah?

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

So many questions without answers

Your promises remain

I can't see but i'll take my chances

To hear you call my name

To hear you call my name

One tear in the dropping rain

One voice in a sea of pain

Could the maker of the stars

Hear the sound of my breaking heart?

One life is all i am

Right now i can barely stand

If you're everything you say you are

Would you come close and hold my heart?

Hold my heart

Could you hold my heart?

Hold my heart

i LIKE getting blood!

so.....ridge likes to pose while he's getting his blood.  he was quite interested in it all this time.  especially the lovely tube/vial/whatever of blood.  he was shakin that baby like crazy till i took it away from him.

for those of you who don't know, ridge started bleeding again monday morning, or at least that's when the signs of it showed up. so we are in the hospital, and hoping to get out soon! he's gotten one transfusion, and they will check his blood levels again later today to see if he needs another.  thanks for the prayers!

something to talk about....

I really don't have a lot on my bloggy plate right now.  Ridge is doing the same, other than I think  his platelets must be lower than they normally are bc this morning as i got him dressed SUPER early for us- 6:30 AM bc his diaper leaked pee in the bed- I noticed a large bruise on his shin.  He is also more mobile now, so that could be all that it is, in combination with his "normal" low platelets.  I don't know.  After changing him that first time this morning, I went to change the bedsheets, and when I went and retrieved him from the living room where Sawyer was watching Toy Story, I discovered he (ridge) had pooped his diaper, and IT was all over the clean outfit I'd just put on him. super.  So I changed him AGAIN and we got back into bed and slept another couple hours.  Upon waking, I noticed another bruise on his cheek.  All that to say, I think the platelets are low.  He'll get lab work this coming week, so we will see.

Sawyer and I have been sicky this week. Ridge hasn't seemed to catch it I don't guess.  I've had no real symptoms except horrible headaches and upset stomach.  Sawyer had issues with both ends....so who knows what the heck we have, had, whatever.

So since I have no real updates,  I don't have anything life changing to leave you with. this weekend will be filled with crochet for me, and hopefully a little jewelry making, and I am also hoping to get the boys' birthday invitation made.  They'll be having a joint party, Lord willing we're not in the hospital, in May.  And heaven knows I need to clean my house this weekend but I'm sure that will get put off.

Anyway, that's all I've got for you.  Anyone out there have anything they'd like me to write a post on?  I'm takin suggestions, so comment or shoot me an email.

have a good one.

finally! i really didn't disappear!

I haven't really felt like blogging. I also haven't had a ton of time.  But this morning, I realized it had been like a week since our last meeting, so I thought I should stop letting you down. :)

Not a lot of updating for us.  Ridge is super crawler lately.  He is doing really well with it, and no major issues with him running out of line yet- I am worried about that, but so far I have been able to keep up with him!  He is loving his baby food. 

We are all home today because Sawyer barfed at school.  Sawyer has spent the day resting and watching movies but has acted fine, so I am hoping he doesn't have a bug...but we shall see.  None of the rest of us has thrown up, so that's good.

So all in all, things are good.  Ridge's hbg has been fluctuating in the 10s some.  But yesterday, he was back up to 11.6 and today 12.6, so that is SUPER!  We had an ER trip this weekend because his central line clotted off- that was weird and frantic, but it all worked out and we didn't have to be admitted. 

Ridge is the happiest little thing- his smile is like one of those smiles that you think would make your face break off, but it doesn't. He always smiles that big.  And then you can't help but smile.  He's so sweet.  And mean. And fun.  And growing growing growing, at least in achievements.  We have two really great boys.  We are very blessed.  It's hard to remember that in the every day moments sometimes.  Sometimes I get really frustrated with myself, and this was true before THIS part of our lives even came to be, but I get frustrated because it is so easy to be overwhelmed.  In our case, with Ridge, and with it seeming like there is something EVERY day, and that there is never a day to just stay around in PJs and not worry about having to get out or people coming over to change dressings or deliver meds or us having to go to a dr. appt, etc etc etc.  It just always seems like it's something.  Again, this was so even before Ridge was here, but i didn't write this blog then, so we just have the here and now to work with.  So ANYWAY, it just becomes stupidly overwhelming.  Because you know what all of that hubub is called? LIFE.  it's life. it's my life.  It's the life God has blessed us with, and for whatever reason, we are the ones who are getting to live it.  But because I am selfish and stupidly human, I still get overwhelmed.  Oh yes, there are a lot of joyful moments, but there are a lot of sad moments, and lot of "I can't do this!" moments, and even the occaisional- I'm admitting it- "WHY ME!?!?!" moments.  I know I don't always approach the table set before us with as much grace and fortitude as I should.  I KNOW it but I sometimes just don't care.  But I am so so thankful that even when I just "know" things can't get worse and that we are never going to make it, blah blah blah, really, deep down, I KNOW that it's going to be okay. It's not going to be perfect.  It's not going to be a fairytale.  It's not going to even be normal.  But it is going to be what it's going to be.  God is going to take us through this.  I'm not always going to have the right attitude, but I'm not always going to have the wrong one either.  So, I want to share something with you.  If you don't have time to watch this, or can't bc it's blocked at your place of employment, or whatever, I posted the lyrics below. 


Let the Waters Rise
Mikeschair


Don't know where to begin
It's like my world's caving in
And I tried but i can't control my fear
Where do I go from here

Sometimes it's so hard to pray
You feel so far away
I am willing to go where You want me to
God I trust You

[Chorus]
There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees
So let the waters rise
If you want them to
I will follow You
I will follow You
I will follow You

I will swim in the deep
You'll be next to me
You're in the eye of the storm and the calm of the sea
You're never out of reach

God You know where I've been
You were there with me then
You were faithful before
You'll be faithful again
I'm holding Your hand

[Chorus]

God Your love is enough
You will pull me through
I'm holding on to You

God your love is enough
I will follow You
I will follow You




yeah. so that's pretty good stuff.