first anniversary

Okay....I don't want to say Happy Anniversary, bc it isn't super happy...

but for sure, without a doubt, July 28, 2010 is much happier than July 28, 2009.

One year ago tomorrow was the day we were admitted to OU Children's Hospital for the first time.  Prior to that, I knew something was wrong...but that was the day our world began to crumble out from under us.  Piece by piece it fell away....and piece by piece it is being rebuilt.  Slowly, but surely.

I ran into a former co-worker of mine the other day and said something about Ridge outgrowing this, and she didn't know that....so in case you didn't either-- Ridge will outgrow this.  Most likely by the time he is 3, possibly sooner, possibly later.  But it will happen.  We do have that hope.

And even in the midst of some of the darkest times, we still have hope.  Perhaps it is then that hope shines brightest.  My friend and I are reading David Jeremiah's book "When Your World Falls Apart" right now, and while I'm only a little over a chapter in, it is resounding truths in that "God is never closer to the vine than when he is pruning it."  I don't know why this disease was allowed to strike our family.  I don't know why we are walking this path.  But instead of why, the book encourages us to ask "What"-- "what" would God have us to learn through this?  And when this is all said and done and behind us, we can trust that we will be changed vessels.  Vessels on a new path and a new direction, and most assuredly, vessels who know what is important and what is not.  Without adversity, big or small, but from experiencing both, especially without large adversity, it is difficult to truly understand the power, hand, and grace of God.  Do I really truly understand it? Surely not.  But never before times like this did I know so much as I do now that I am not in control.  The Lord holds us in his hands and nothing else matters.  What would he teach us through this?  What lesson is it that we are required to learn through this?  Is there joy in that?  Not a lot...to me...yet.  But when we can shake this dust from our feet, the light on the road ahead will shine that much more brightly...with that much more hope...that we have arisen from these ashes and this dust and this life we never wanted to live to a life we never could have dreamed of living.  I can not imagine living through anything worse than this in my lifetime.  I pray this is my "big thing"...but I have no control over that- regardless of what comes our way, His grace is sufficient, for even us.

This road has been long.  This road has been difficult. And this road is still very much a part of our lives.  So are some of you.  Thank you over and over to the family who hasn't questioned our judgement on things and the family who has been supportive and encouraging in the spoken and written word, as well as in prayer, and in helpfulness.  Thank you to the friends/co-workers who have visited, texted, called, sent notes, donations, meals over the last year.  You helped meet a need that was and is there- thank you for being faithful.  Thank you to my newer friends, those of you with other kiddos with MLT, who have become a huge support group for all of us...it is so wonderful being able to talk about this with people who TRULY understand.  All of you- MLT families or not-- are compassionate and prayerful and giving and sympathetic, but it is only a parent who has walked this same exact road who can truly truly understand the atrocity this disease is.  And I couldn't be as together as I am (which is often not much) without those friends.  They have often been my lifeboat.  Thank you to our wonderful nurses, who take care of Ridge often like he is one of their own.   We have recently acquired some new nurses here at the hospital, so I will probably fail if I try to list you all.  But we love you all!  Thank you to our home health company- the nursing and pharmacy departments are awesome, and check in on Ridge weekly.  Thanks to the techs/support personnel on 8th east and west for taking good care of us-- man, some of those techs are flipping awesome.  Thanks to Child Life for loving on Sawyer and taking him to play and entertaining him (especially Ms. Whitney!).  Thanks to our doctors who let us be involved in Ridge's care- I know it is our right- but thank you for being so supportive and willing to roll with our plans a lot of the time.  Thank you to our church family...for the prayers that I know are continual....and for the cards that the Sunday night class made for us...those were just wonderful..and for the texts of encouragement...and thanks to our pastor's family for the visits and the unending support and love...and to our pastor's wife for recently trekking it over here just to be a walking buddy so I got out of the hospital room a bit.  We are so blessed by so many of you.

I know many people I spoke of don't even read this blog, but it's no matter-- we have many people to thank, and much to be thankful for.  A baby who is still here with us a year later....when a year ago we were just starting this road and weren't sure at all if he'd survive.  As any mother can imagine, it is difficult when a child struggles through a medical condition.  As a mother with an older child who is medically "normal," it is, in my opinion only, bc this is all I know, incredibly difficult to watch my youngest have these medical issues.  I know God has allowed this to happen. I know He will carry us through. I know He has a great plan and purpose.  I know it.  But I also know I want to be home, both of my boys in swim trunks playing in the sprinkler, or snuggled up with me for a nap, or out to eat without worrying too much about germs....and I know we will get there one day.  But not today.  This year has been so difficult in so many ways.  From thinking your baby is completely normal, to finding out he is incredibly extraordinary in a way that society deems sometimes as "having something wrong with him/unwhole/busted/broken/imperfect/whatever term you want to use here"....that is difficult as a mother.  Because to me, Ridge is exactly as God made him, though I hate that he has this disease.  He is made in God's image as is Sawyer and as is every child/person....But I see him through a different filter than a lot of the world does.  Thank you for seeing him through that filter.  If you don't, I implore you to rethink.  Do I like this road?  No, but it is the road we've got in front of us.  You didn't choose your lot any more than I chose mine, and while we need love and prayers and encouragement and support, we don't need the world to be sad for us or pity us or feel sorry for us-- because this is our life.  We must learn to live it, even love it.  I'm not there yet.  But I'm trying.  We can't control our circumstances, but we can control our reactions to them. I'm working on THAT too. :)  So just as some children have birthmarks or no birthmarks, hair or no hair, 10 fingers and toes or some other amt of those, attached or unattached earlobes, so our baby was born this way...as were others...and some were not.  He is normal.  He just has this one special, awful, extraordinary thing about him, a thing that God will use for good.  This thing that God will use to bring glory to Himself.  This thing that God will use as a work in my life and in my family's life.  I want this to be behind us.  Today.  But I don't call all the shots.  I just petition to the One who does.  And never will a moment go by that that prayer is not on my mind-- Jesus, take this thing from us.  But as He allowed it to enter our life, so I know He will remove it in his time.  And what a glorious day that will be-- when Ridge is able to enjoy life to a fuller extent than he has ever known.  But until the Lord says, "Today. Today is the day," we will keep trudging and trusting and knowing that He has a plan.  May we be willing to bend where we need to bend and break where we need breaking and trust with a trust that is more than we have ever known.  And as we walk through this fire, may we all escape unscathed, and be able to say without a doubt, "The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the power that saves me, and my place of safety."

So...one year down.  Hopefully, this time next year, I will be writing something saying this is all behind us. Or perhaps it will all be so far behind us, July 28th will come and go, and I won't even notice what day it is.

Blessings-

ridgey

we got off the octreotide...so we have no bags...no tubing....just a port and a central line hanging freely.  so we are semi-normal.  this was a couple days ago, and ridge is bleeding again....but let's focus on some positives here:

you might've been in the hospital too long if....

I wrote about some of this awhile back, when we were living in the hospital. I will try to come up with some different material this time....

Sure-fire ways to know you've been in the hospital too long...

1. You know the code to the laundry soap locker, albeit written on the laundry key itself, by memory. And when someone walks in the laundry room and sees you getting soap out of that locker, they tell you that isn't for patients.  (In our defense, our PICU nurse way back in August last year DID tell us to use that soap, so that's the soap I always use.)
2. Things (SOME OF THEM) have lost their gross factor.  Like....oh, who am I kidding? almost everything is nasty here.  But when I was opening that locker in the laundry room, I thought, how many people touch this? I don't even care.  But that's it.  The washer still grosses me out, even when I bleach it myself.  So does the dryer. And the chairs in there. And the door knob.  And our room is still nasty, and I clean it myself.  And even after it's been cleaned, if I swiffer it myself, I get things like this, repeatedly:

don't vomit.

3. You know what you want and when you want it.  You know what time (most) things are due.  You know how to do most everything that is being done to your child, and it makes you somewhat antsy when others are doing it, even though you love those said others.  And you know when to refuse things.  As in....a recent ER visit (which took FIVE HOURS to get us admitted.  sheesh people, really? the kid needs blood.  ridiculous.  it also took THREE sticks before the nurse conceded to let someone else try to access Ridge's port.  No wonder we are freaked out by germs/port infection/whatever.  Props to the ER, however, on being able to find Ridge's veins on the first try, usually.  But we'll leave the port to the people on the 10th floor.)...ok, recent ER visit.  XRay lady comes in (she doesn't have xray vision or anything, so even though that reads like she is a superhero, she is not)-- and says, "We're here to do a chest xray" to which strong Bdawg replies, "uh...why?"  and she says, "i don't know." and he says, "yeah, we're not doing that."  "well, i can find out why for you." "no, we just had one three days ago. we aren't doing that."  and we didn't do that.  i hate xrays and ridge has had a billion of them and i don't want to do anymore. unless we have to. and we didn't have to.  so we didn't do it. at all.  and the world stayed together.

4.  You get mega annoyed at stupid rules.  And rules that haven't been used before, but are now being used, even though you've been here a year and "that" has never been done.  Things like the pharmacy making you send your $6 a day medicine to them, so that they can make a barcode for it, so that you can have your own medicine scanned so that you can give it to your child...although you give that medicine every time you are in the hospital, and NEVER has pharmacy asked for it.  And on a side note, when we were LIVING here, they carried that medicine.  But now, they never have it.  Well....if you want to be able to scan it....get it so that we don't have to use ours when we are here. Seriously. That's stupid.  Really Really stupid.  There're a lot of stupid rules.  But that's one.

Now I'm all distracted so I can't type any more lists.  But here's the updates.

Ridge's port is infected. Again. Or still.  So we are running antibiotics.  Maybe we will have to take it out- major surgery- or maybe we won't.  It is being discussed.  I am over it. Whatever we have to do, we will do.

Meaning, whatever is BEST, we will do.

Tomorrow, we go to zero on the octreotide.  Yes, people, that is right.  We will have to keep his central line awhile, especially if the port is removed.  But not forever. Maybe we won't get to have summer water fun, but 2010 WILL bring a bath for Ridge.  Lots of baths.

Ridge is growing. 2 lbs and 2 inches this month.  And jabbering twice as much, at least.

We are leaning heavily towards homeschooling S-Puppy this year, bc if we are in the hospital this much, it will be difficult to pick him up from school at 11:30ish, so I have ordered some materials and we will be starting a trial soon.  I am kind of excited.  And kind of freaked out.  It will be a new adventure.

And now a few pictures to entertain you.

We took Sawyer to the Children's Museum in Seminole the other day....

he had fun.  

We also had a family karaoke night the other night. BDawg and I had fun.  And this is the only picture I have of Ridge from recently.  And it's hilarious.  He looks so tiny!

And Noah was born this month.  Here are some pictures of his cuteness.

That's all, folks.

needed that....

So, I finally got to see baby Noah today.  I got up and thought, I gotta see that baby!  It was a quick trip to Denton, two hours hanging out at the hospital, and then another quick trip back.  So six hours in the car later, I'm home.  But not for long.  Ridgey woke up with dark stools....His hgb wasn't great today, and his CRP, which marks inflammation, was WAY high again.  So here we go again. Bdawg is at the hospital with Ridge-puppy and S-puppy is here with me, and we're about to hit the road.

I am was so discouraged.  I'm over this...I hate it, and I want it to go away. Forever.  I pray and I pray, and here we are, back at the hospital.  So I got this great text from my pal Kelly over in Alabama, "When anxiety was great within me your joy brought consolation to my soul."  It is in these desperate times that people speaking scripture over you is so necessary.  So thanks to her, I got in the car with sawyer from Panera Bread in Denton, found my old school CDs and started jamming out and bawling and singing as loud as I could in the car.

Songs like:





yeah....In Jesus' Name, we press on.....dear Lord, with the prize, clear before our eyes...we find the strength, to press on....




And songs like:
http://listen.grooveshark.com/#/s/Good+For+Me/l9YSu


when the shadow of sorrow comes, I will fall on the only one I know is the Rock that can't be shaken...it is GOOD for me to lay it down at your feet it is GOOD for me to lay the good and BAD in your hands, My God, it's good for me to lay it down at your feet, it is gooooood for me.....


and songs like...



Deeper than my view of grace, higher than this worldly place, LONGER THAN THIS ROAD I'VE TRAVELED, wider than the gap You've filled....




Yeah. that's really all I need to say, people.

oooooover it, ridgey. plus a new baby.

not a new baby for me, let me preface that way!

moving on.
ridge was back in the hospital last friday.  we are still here. hoping to go home today.  i am so weary of this journey and often feel like i just to vomit over it all.  seriously.

but here's the latest story.
came in friday bc of fever. he was bleeding some too.  fever was treated as a line infection but all cultures came back negative.  so who knows- could it still be an infection? i guess.  could it be a virus? flu? sure sure sure. we dont' know. he feels better now.  he was and is getting four molars at one time.  however....get this.  even in all this illness, his bleeding wasn't terrible.  we maintained the new low dose of octreotide (probably only 2 more weeks on that, peeps!!!  then get the line out!!! so august/september- my baby will get a BATH!), and we did NOT put him back on steroids.  we increased his amicar a tad, and hellooooo-- one day later, one transfusion later, the bleeding stopped.  for reals, people.  his hemoglobin was the same, pretty much, saturday through tuesday. it dropped some tues. night and the diapers are some dark today. but we gave a transfusion today and are hoping we can go home awhile. we will continue on reducing the octreotide.

since we've been weaning the octreotide, ridge has grown 2 inches and gained over half a kilogram.  so that's....like....a little over a pound.  in two weeks...considering he still wears 6/9 mo clothes and has since he was 4 months old....i'd say we're improving!

he is losing hair, and we are not sure if that is just baby hair, or a reaction to coming off steroids, or something else all together.

please pray he avoids infections.  things that we are exposed to and we don't even catch/become symptomatic, he can still get and he can become very ill from them-- so if i'm around whoever and they have had the flu, or been exposed to it, and i become exposed to it, even if i don't get sick, or that person wasn't sick, ridge could still get it bc he is so immuno suppressed.  so health is so important...no sicky people can be around us, we have to watch where we can go, and even a runny nose could be a big deal to ridgey.  i hate it.

pray he makes his own blood so we can stop getting so many transfusions.  my friend kelly's little girl sadie, who has MLT, has been around 9.5 or 9.6 hemoglobin wise for about 2 weeks.  this week...she was 11.2!!! without a transfusion! praise the Lord!!! that's where i want to be.  so pray that for ridgey, too.

he is fussing so i better go.  the new baby-- my sister in law had a cesarean today, and noah bradley castleberry was born at 8:01 this AM, weighing in at 8 lbs 6 oz, 19 inches long.  THAT's who had a new baby. bdawg and s-puppy (sawyer) went to see him today.  so so sad that we couldn't all go.  makes it so bittersweet.  but i can't wait to get my hands on that baby!  i'm gonna wait patiently, but i won't be a good sharer once i do get to hold him.  just sayin.

day 2 [a.k.a i procrastinate]

One of my friends and I are going through...supposed to be going through...Beth Moore's "Living Beyond Yourself" devotional.  Today, I managed to get through day 2, week 1....although it was two or three weeks ago we began this attempt. Good thing we both lead very similar lives, so while accountability is there, it isn't overbearing! :)

More on all that in a bit.  First, brief recaps of our life right now.  And a promise to splice in more pictures in the future. I have some funny ones of Ridge.

Ridge-- The first step in the Octreotide wean has been fine.  He has been on this dose BEFORE, way back when we were in the hospital, so I wasn't overly worried about the first stage of the wean.  I am a little more worried about the next phase-- it will begin on Wednesday or Thursday of this week.  He also comes off his steroids again today (we put him back on them when he was bleeding badly a couple weeks ago).  The steroid absence alone will most likely result in SOME bleeding/oozing, but combined with the Octreotide wean, it will make it difficult...impossible...to really distinguish what the culprit is.  Who cares, really, though.  Apparently, he will bleed regardless, unless we keep him forever on the steroids.  And I just don't know if I can do that.  Ridge is free standing more and more, and can now walk if we hold his fingers.  He's the cutest little thing ever.  He looks so tiny standing up and bouncing, or walking along holding my fingers.  He jabbers, but still, his only word is "mama."  We are working on getting him to use a sippy cup.  He just likes to bite it.  He loves potatoes and he loves bananas.  And he loooooves cookies (animal cookies/gerber graduates/some other organic cookies-- i'm not giving him oreos or anything like that, people).  He knows what the word "cookie" is when I say it.  He can clap, dance, "frame a pretty picture" with his arms around his face, try to blow kisses, but really this comes out more like smacking his temple...so he's a little off there...he can reach for things if he wants them and you have them...he is changing a lot.

Sawyer-- is one crazy boy.  He's a boy-- not a baby, not a toddler, not a little boy, he's just phasing into a boy. And it makes my heart sad sometimes.  But it makes me very happy that he can express himself incredibly clearly, and he can help out tremendously around the house and with Ridge.  He is curious about things and asks a lot of questions. He makes messes a lot, so a new rule was implemented "We won't get on to you about getting all of your toys out, as long as you get all of them out and leave them in your room.  At the end of the day, you have to clean up your own room. Your toys can not be out all over the house- ONLY in your room."  If you know me, you might or might not be surprised that I AGREED to this rule...but I did NOT suggest it.  I have been good to just ignore the complete littering of toys covering the ENTIRE carpet in Sawyer's room...covering the carpet, the bed, the dresser.  I really have not scolded even ONCE.  However, someone else has....which cracks me up.  I can't think of a lot of other updates on Sawyer, but he's a lot of fun...and so big.  It is sad to me that he is growing up....

BDawg is still glasses-less.  I adjusted just fine to the change.  I even mowed the yard, since he couldn't bc of his lasik.  I know, those of you who know me, are impressed that I mowed-- late one evening, the sun wasn't even out, so it wasn't even beneficial in trying to get me a tan!!!

We got to go out for our anniversary- dinner and cupcakes and then a trip to the furniture store (i know...we're so old).  It was so great getting to just sit and talk (this is when the whole, "sawyer should be able to make a huge mess in his room" discussion took place.

Me....oh, nothing new with me.  Busy busy...I am getting a lot of orders for headbands and hats and such.  This weekend I made pico, and black bean and corn salsa....and one night I pan seared tilapia, which Ridge looooved....Last night, I grilled steaks (I worked the grill!), and man I wish I had the pics uploaded- these steaks were HUGE!  I shared some of mine with Sawyer, and then, I can not believe I ate the rest of it, or that BDawg ate the whole other one-- seriously, they were enormous, at least 16 oz, Brandon says.  Huuuuuuge.  I felt sick after, and still feel full even this morning! Ha.

We watched the fireworks from our front yard bc our neighborhood is close enough to see them....Sawyer got to work a sparkler or two, and did a lot of those "popping" type fireworks- no fire involved.  But, my dryer did catch on fire the other night.  It's okay now, so don't worry too much.

I feel like that was some pretty good updating.

So I will leave you with some depth...not really from me, but from my day 2 devotional.

"Perhaps you continually struggle with the fear that if God had known some of the mistakes you were going to make and the sins you were going to commit, He never would have chosen you.  Scripture is clear-- God foreknew you from birth to death, yet He predestined you for His very own.  It's called grace....."

Do I really need to elaborate on that one??? How many days (every single one) do I feel like such trash because of something(s) I do or say, or my attitude in light of our struggles, or whatever it is insert your own whatever here. But rarely...ok, maybe more like never....do I remember that God already knew I'd be here.  He knew how I'd respond some days, and even if it isn't how I should respond, He still knew.  And He still chose me (you).  He still loves me (you).   He still saved me and forgave/forgives my sins when I ask(ed)-- just as he has done/will do with you.  "It's called grace."

"Remember this important fact about God.  He never asks anything of us to make Himself look better.  The demands He makes on our lives are NEVER for His personal gain.  We cannot make Him any more God than He already is.  He would be no less Lord of lords if no one believed.  Every urging and exhortation of God to us is for one major reason.  He desires that we have the pleasure of knowing, serving, and sharing Him.  God reserves the sovereign right to be sole authority over our lives for our good, for our completion, for the conforming of our lives to that of His Son."

Soooo...I can believe or I can not believe.  I can trust that God is/is going to taking/take care of us or that He isn't.  But it doesn't change HIM.  He is constant.  It does, however, change ME.

Good stuff.

Here are some things you can pray for this week, if you need some more things added to your prayer requests!!!
1. Ridge's Octreotide wean....that it would be successful.  That we would be able to be free of this medicine and free of the literal cord that binds him.   That we would enjoy a long time at home this time.  I hate going back to the hospital for more than a day at a time.  It makes me anxious and nervous and it is hard to enjoy time at home due to a fear that I will not be here at home long.  But that's another prayer request in and of itself!!!
2. That we would enjoy our time at home, especially with Sawyer.  I often hate how his life is so upside down because of all of this...even though I know he doesn't know differently.
3. My friend Emily.  Her husband Todd has been in the hospital previously with some major health concerns-- fluid around his heart, and possible lymphoma (but it turned out it ISN'T lymphoma, thank the Lord!) Anyway, he is back in the hospital for more tests/biopsies, trying to figure out what is going on.  She is about halfway through her first pregnancy, and I ache for them during this trying time in their life.  They are great people of faith with great friends/church family/family lifting them up, but please pray for them.
4. My sister in law is (possibly) having her first baby this week.  BDawg may be able to go see her/the baby, but because of Ridge, we won't all be able to go.  I am so so sad about this.  Pray for a good report at the doctor and that baby Whateverhisnameis will come this week if he is ready!  He is measuring very big, but we are banking on the U.S. being wrong....but either way, pray that all would go well.  They are trying to sell their house, move back to Oklahoma, and have a baby all at the same time....no small feat for anyone.

Well...that was enough of a post to get you through the week, I suppose! Sorry for so much writing!!!!  Have a great week.

dance dance

we stay up way too late in this house. it's ridiculous.  even the kids-- i mean, bedtime is early enough for us, and we do usually get sawyer in bed or laying down by 8:30 ish, but sometimes, in the summer, I look at the clock and can't believe it's 10:30.  or 12:00. whatever.  so last night, after I got home from a wonderful time at the movies with my friend Julie, the boys were still awake, so i held ridge and had a long phone conversation with my friend andrea....so all in all the night was good. after the phone call, and during it, ridge was babbling mamamamamama and laughing...so i turned on the radio when i hung up the phone...and sat ridge on our bed and let him dance.  he just bounces up and down on his knees, totally in sync with the music. it's hilarious.  

he can also free-stand now.  he can't walk, but he can stand for long periods of time w/o holding on to things.

he also started  a lower dose of octreotide yesterday.  please keep praying for us!!!  this is a huge step!

so, it seems we are all doing all right for now.  hope summer is finding you well.  

sorry for the short post!!!  i intended to write a lot, but got here, got caught up on the blogs i read, and then, was sort of out of time!