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

Sunday, October 31, 2010

what's going on

So today is Sunday. Halloween.  I think it's been at least a week since I updated, and it bothers me I am so bad at blogging nowadays. Sorry.

Last weekend I went to see my college girlfriends for a mega baby shower.

Here they sweet sister friends:
two babies in their mother's arms, and two babies in their momma's bellies...and contrary to the appearance of this photo, there is NOT a baby in MY belly.  suck it in, alisha.
We had so much fun and it was sad to leave, because it is a rare sweet treat to see one another.  We were sans one other friend who was on her way back from while it was a great time together, we wish Lu could've been there too!

Saturday while I was gone, Ridge started bleeding and had to go back to the hospital.  We didn't know why he was bleeding, other than he was still cutting some teeth.  So he got blood a couple times, the bleeding stopped Tuesday, and we went home. Tuesday in the night, he spiked a fever of 101-102.  So we had to take him in  (anything over 100.5 warrants an ER visit for US, because Ridge has a central line and it is always assumed fever means line infection.)  Line cultures were drawn, peripheral cultures (IV stick) were drawn...blood was given...tylenol was given....and we just waited it out.  He didn't seem to have any infection, there was no growth on any of the cultures.  But...being there this week meant we missed out on some of the fall festivities in the community.  Thankfully...we are always at CHILDREN'S the $$ i spent on costumes this year did not go to (as much) waste.    Friday the hospital had a party (Sawyer didn't want to we didn't)...and they had trick or treating in the halls...the kids both donned their costumes (one wasn't as willing as the other....) and we got lots of goodies (not so much candy bc they didn't really hand out candy at the hospital)....all in all, it was a good time.

Saturday, I had some errands to run, so Sawyer tagged along.  First stop: EARLY VOTING! I didn't know you could do that until this last year or so!  Much less stress (um, last presidential election I went on my planning period to vote and it ended up taking me THREE HOURS to get through the line!)...however, it meant I had to go to El Reno for this general election (early voting has to be done @ the county election board) just so happened, El Reno's trick or treat through the businesses was that day (I don't know the technical name, sorry!) when I got Sawyer out of the car, he said, "WOW mom this is gonna be FUN!" Sorry, kiddo, THAT isn't what we're downtown for :( .  But I got my vote on, and we headed to finish up our errands.  While all of this took place, Ridge was getting blood and getting cleared to go home.  He developed a rash during the transfusion.  It was assumed to be a reaction.  Benadryl was given. He seemed fine.

So last night, we were all home, and we went trick or treating!  First time for both of the boys!

Buzz Lightyear...and an alien from Toy Story.  See those two pumpkins? there is a third one on the ground by the bench.  Stupid me left them out last night, and after trick or treating, only one of the three remained. Dumb kids, stealing my pumpkins. 

So this morning, Ridge still had the rash.  He feels fine, is afebrile (no fever), so the rash was just....annoying (to us, not him).  So I got my research on (bc I think parents need to be involved in their kids' health-- I will never again take at face value what a doctor tells me WITHOUT first and second doing research myself.  I don't think this is OCD or weird, I think this is GOOD PARENTING.  Doctors can be wrong.  Doctors can be at a loss sometimes.  It's okay if I research something, ask about it, and am wrong/get laughed at/people think I'm weird. Because today...I might've been weird, but I AM RIGHT!)  I thought Ridge probably had Fifth Disease.  It's just a virus, in the same type of family as other rash viruses like Chicken Pox, Roseola, Measles, Hand Foot Mouth...It starts with a fever/stuffy nose/red cheeks (check, check, check).  Then, a rash appears on the tummy/back/feet/hands...but at that point, the child is no longer contagious.  Most everyone has had fifth disease...and once you have it, you are immune.  You haven't had it?  You  might have. Not everyone even knows when they had it/if their kids had it, bc not everyone shows symptoms.  It's a mild virus that lasts not long at all, there is no treatment bc it is a virus, and the rash might hang around a few weeks, but isn't usually problematic and certainly isn't contagious (again, once the rash appears, no longer contagious).  Brandon had put a call in to one of our GI docs, the one who'd seen Ridge all week. He shared the symptoms, answered a few questions, and also asked if it could be Fifth Disease, bc I wanted to know.  The doctor said I'd done good research bc that's what she was going to suggest.  :)  Yes, I am proud of myself.  All this to say-- PLEASE, parents, NOT bc your pediatrician/doctor isn't good, bc I am CERTAIN he/she is WONDERFUL, but bc YOU ARE THE PARENT-- please please please be actively involved in your child's healthcare.  Ask questions at visits, DO RESEARCH/READ UP ON THINGS beforehand, and after a diagnosis/visit, do more research. Make sure you agree-- bc sometimes, doctors are wrong.  Sometimes they just don't know bc there aren't enough symptoms yet.  They are human. Wonderful humans who take great care of our kids, but they are still human, and your child isn't THEIR responsibility.  Your child is YOUR responsibility.  Knowledge is power and you have the ability to read up on things and be educated and involved in your child's illnesses/well checkups/vaccines/etc etc etc.  I don't have kids in school yet, but as a former teacher, I will go out a step further and add that this advocation/involvement extends to the child's education-- while teachers might be facilitating classroom education, it is not their responsibility to get your child where he/she needs to go -- they are there to help in that process, sure, but as parents, we are also supposed to be training our children in the way they should go.  I know...soapbox.  But before Ridge, I took everything our ped said and just ran with it. I got the vaccines at normal times.  Sometimes it might be a ton of vax at a time and I didn't know. It wasn't that I didn't care, I DIDN'T KNOW. I am PRO vaccinating...but I am MORE pro EDUCATING.  I think you should KNOW what you are putting in your child's should know what the symptoms of an illness your child has mean-- and it's okay to know before you go to the doctor. It's okay to think Sally has strep throat and ask if it could be that even if the dr says it isn't that.  It's okay to ask for a strep test, or bloodwork, or whatever.  I'm not saying be paranoid.  Goodness, no.  BE INVOLVED, though! God gave you that child-- if anyone should know what goes in his/her body, or why something is going wrong in his/her little body, or what's going on at school, it should be US-- the parents!  These precious babies are entrusted to us and we need to take the best best care of them-- we make sure they are clothed, fed, and loved-- but what about their medical care? Why do we so often just allow someone else to make that decision for us?  Because they have MD by their name?  Good reason- but it doesn't make us exempt from being EDUCATED CAREGIVERS FOR OUR CHILDREN! 

okay. i'm stepping off...for now.

I am busy trying to finish October See Saw Ridge Production orders .... won't be done by Nov 1...but I do have several finished.

And...November 11th is fast approaching.  Blake Bolerjack/Soul'd Out Quartet benefit concert for Ridge is at Yukon Church that day.  Contact the church for more details. Tickets are $10 in advance, $12 at the door- proceeds go to help cover Ridge's medical bills.  A love offering will also be taken up that night.  We appreciate all the parties/people involved in making this possible.  God is good.  Because of the concert, there was a write-up on Ridge in the Baptist Messenger here in Oklahoma.  Because of that write up, a small church of about 25 people (my husband spoke to the pastor, who got our information from my dad, who is a BCM director at SWOSU, for those of you who didn't know) became aware of our story and wanted to help. They sent a donation that well surpassed their numbers...I can't believe a church that size was able to be so generous-- Thanks be to God!

I think that's it for now!

Tuesday, October 19, 2010

blah blahing for you

This post isn't going to have a central theme.  So if you are looking for anything other than a hodge podge, move right along, people, bc there will be nothing to see here.  But if random, sporadic subject changes are something you might be in the market for, keep your eyes peeled, bc you're probably gonna hit the jackpot here.

Ridge is walking like nobody's business.  He doesn't crawl. He walks.  He is jabbering up a storm, but not really saying anything.  I mean, we know he is saying SOMETHING, we just have zero clue what.  Sometimes WE might know what he is saying, but you would never know. It's like his own language.  The cutest language you ever heard.  Until he gets demanding, then it isn't very cute.

Ridge is looking more and more like a little boy. I was going to post some pictures but blogger's image upload isn't working right now.

Wait, maybe it is. I don't know. I will do pictures later.

Sawyer is getting his learn on at school.  The other night I told him we could go get fro-yo at Lushberries in Yukon (bc I had a rockin' groupon to there...) if he said his memory verses.  The kid didn't really want to, but he said all seven of them.  He's impressive.  Today he wrote 15 letters (that's all he knows so far) and we are working on blends heading towards reading.  He is very smart.  We have a spanish workbook and I discovered today we only have one more lesson!  Wow.  I can greet you, tell you my name and how I am doing today...I can tell you most colors...I can count to 10...I can tell you what a handful of foods are...I can tell you how to say mom, dad, grandpa, grandma, boy, girl....I can tell you a lot of clothing items...and school supply items...and we are about to move on to buildings/locations...then we are finished with Spanish.  but we both learned a lot! I got him some more workbooks tonight and finally found some lined kindergarten type paper at WalMart (barfo, I HATE walmart...too crowded for me...but I was there anyway, so there was the paper, so I got it).

What else....not a whole lot.  I've been sewing a lot.  I am finishing up October orders and hoping for just as many in November.  I also have several new items I hope to craft in December because I am taking December off in order to get some Christmas gifts ready.  I can't believe it is almost Christmas again.  I can't believe we might be home for halloween...and Thanksgiving...and Christmas.

It has been so so so good being home.  Ridge got blood last Monday morning at like 5 AM.  It didn't boost him too too high, only to like 11.5....and yesterday, a week later, he was 10.7.  That is very good, considering we take 3 mls of his blood every single day when we flush his line....and considering for about 24 hours he had some darker diapers (not black, but darker)....I am ecstatic for him.  And frankly, I am ecstatic for us. Granted, he still has a central line, and he doesn't have a lot of his vaccinations, so he is still "fragile"...but he is more normal than he's ever been.  He is wearing clothes that are actually the size of his age, finally....and he has the greatest smile and laugh ever.  He loves Sawyer, and Sawyer is a wonderful helper and playmate.  I hope my boys always love each other like they do now-- even though I know they will fight, bc they are brothers.  They love each other a lot. Ridge is a big time cuddler/hugger, especially to his momma.  His daddy usually has to ask for it, but Ridge will randomly just walk up and hug my legs.  Too sweet.

BDawg is just hanging out at work....he is getting to go hunting a bit more this season than last year, bc he has somewhere in Yukon he is allowed to hunt this year.  He is enjoying us being home I am sure, and is helping out a lot with the boys and the house and cheering on his Rangers....and we make a good team with the way things are right now.  He's a great helper, and goodness knows after 8 hours at home with the boys, I need his help when he gets home!

I am still wanting to write a book....haven't jumped on it yet, but thank you to all of you who have offered tons of verbal support!  You have made me feel more confident!

My brain is so full of so many things right now.  I have concerns...I have praises....I have dislikes....I have desires...wishes...prayers, of course, place my mind has gone a lot lately is to our sin and God's grace.  By our sin, of course, I mostly think about mine...but you have some too...bc you know, ALL have sinned.  That means you, too. :)

I think it was perfect timing when I heard this song, which I've always liked but hadn't heard in awhile, the other day:

I am who I am.  I like who I am, for the most part.  But, just like you, and everyone in the world, I have flaws. I have things I don't like about me.  Things that seem intrinsic within me....things that are my self, at war with who I am called to be. I bet you have things like that too...or maybe I just say that to make myself feel better....but no...we all have things like that.  These things I hate, these things that cause me to "miss the mark" (aka...definition of the word SIN), they are things that are not to be a part of my life....or yours...but they still creep up sometimes.  But ....  warts and all, Christ takes me in.  Which is a good thing, because none of us has any hope in our sin.  None of us has any true, eternal hope anyway, not without Christ.  And when I get the most down about my sin is when I feel like there are others with their own agendas, opinions, judgments about it.   Like I don't know it's there?  Um...duh.  But....My Savior's always there for me.....does that mean HE likes when I sin? Certainly not. I don't like it when I miss the mark, so most assuredly He does not, either.  I don't know. I am rambling.  Point, though-- why do I care if arbitrary people have issue with me, if I know I am right with God?  I'm not saying sin so grace can abound more, nor am I saying to be a whitewashed tomb....I just find a sense of freedom in being able to be who I am created to be.  Do NOT misunderstand-- not be who I am intrinsically-- because inside, at the root, we are sinners.  freedom to be WHO I AM CREATED TO BE-- in God's image, the woman He has made me to be.  Will I stumble?  Well, do you?  So sure, I will.  Do I have the capability to stand grasping the hand of the One who put me on my feet in the first place?  Yep.  Do you? Yep.  Am I forgiven in Christ? Yep. Are you? Only you can answer that.  Will I mess up again?  Yep. Will I get up again?  Yep. So when I see others around me doing that....that very same thing...what will I do? Push them back down? Shake a finger of shame at their face reminding them of their sin and the ugliness it is?  Sigh.  I hope not.  I hope I will help them rise out of the dirt, no matter how many times they fall in it.  Or I hope I will at least stand back and rejoice quietly if helping them rise isn't really what they need. I don't know. I just find it frustrating how pious we can be at times.  You don't have to agree...I warned you I was going to be fairly random tonight.

I don't really have a lot of sense to make, I'm just working through my thoughts and feelings and thinking on some conversations via email, facebook, phone, real  name it.

So what? What do I want to be? Who do I want to be? Who AM I?  Who are YOU?  I don't know.  I want to be as free as Christ intends for me to be. I want my chains to be removed- chains of sin, chains of concern for what you, you, you, her, him, whoever thinks about me, chains of what society says is right or wrong, chains of what "religious" people say is right or wrong...whatever. I want what JESUS says is right.  Not what you THINK Jesus says is right.  What HE says is right.  I want to be pleasing to him.  Not you. Not any of you, or any of "them."  Not that I don't value your opinion, because of course, I do. But I don't value your judgment (for those of you who internalize things- I'm not necessarily speaking directly to YOU specifically, so dont' get your feelings hurt. :) I'm RAMBLING, journaling, sharing my thoughts...).  I want to be able to look past the sin of my fellow humans, even if I can't see it, because it is most definitely there, and love them the way I know Christ loves me.  I want my relationship with Christ to be right, of course, but I do not want sin and Satan to have the power over me to let my sin weigh me down anymore than this: through the conviction of the Holy Spirit, my sin be brought to my attention, my self be bowed down, and forgiveness be sought, and granted, through the Love of Jesus Christ.  Because He HAS overcome.  Sin and death has NO power over me.  Because I am in Christ Jesus.  So even though I fall, every single day, He WILL raise me up. Every. Single.Day.  And I'm hard enough on myself. Sin is heavy enough. You're hard enough on yourself. Sin is heavy enough. You don't need me adding to your load.  So I hope I don't. I hope YOU don't.  I hope that, in Christ, we lighten each other's loads.

I hope that this was random enough for all of you.  I'm not sure I'm finished. But I'm going to stop for tonight.

Psalm 139:14
I am fearfully and wonderfully made.

So are you.

Thursday, October 14, 2010

whose keeping stats?

okay. here's the scoop or the play by play or whatever for this past four in, almost a month.

1. Ridge has been home (as we all 4 have) 21.5 of the last 28 days.  Ridge has been home  (as we all 4 have) 24 of the last 28 nights.

2. Ridge has gotten blood 4 times in the past 28 days.

I don't have to type anything else.  Because you all know, that is huge.

Monday, October 11, 2010

lookie lookie!

we are in the hospital, so my post will probably be a little bit abridged...

short of it:
1. ridge is getting four teeth. by the time we realized this, he had started bleeding.  he got blood last sunday, and after that, had one day of normal diapers and then all week has been having the black "bad"
2. we got blood thursday and went home (late, due to some stupid orders)
3. we came back friday bc he'd already blown right through all his transfusion from thursday.  but after getting blood friday, although he was still having BLACK diapers...he didn't need blood again saturday...or sunday...and he didn't even need it monday but it was so "close" that we went ahead and gave it anyway bc the lab was taking forever to get his labs anyway....he didn't respond as well as i'd hoped...but his second lab after the transfusion was the same as the first, so he was stable....and then...
4. normal poop!

this is exciting, because even with black stools ALL week he only got blood three times.  and normally, black poop would mean a transfusion a day for us...or more.  we did not go up on his amicar.  we did not give steroids. we did not do ANYTHING but give red blood cells.  and the bleeding still stopped.

it IS getting better.

and with cautious optimism, i say...

the worst



Friday, October 8, 2010

we need your help.

Below is a picture of some of the children with MLT/CVAT, the disease Ridge has.

Wisconsin is working on gathering funds for research on this disease. So far, there is little to no research on the disease, and there is no known cure or treatment.

Ridge is fussing, so I can not share a lot right this second, but here is a link to a petition we are working on to gather funds for MLT research.  Please take the time to sign it, and share it with those you know.  This would provide funding for research on the disease and help doctors figure out (possibly) more effective treatments.  It would also help, hopefully, provide funding for MLT families like ours to travel to Wisconsin when needed for research opportunities (no guinea pig stuff- we won't do that...I'm talking about labs and stuff that has to be done on site).

When you fill out your information, you click SIGN NOW, and then you must click SIGN again for your name to go through. Please take less than one minute to do this for these kids.

click here to sign the petition!

Sunday, October 3, 2010

two weeks, baby.

Ridge is at the hospital with Sawyer and Bdawg.  He is getting a blood transfusion.  He wasn't quite at transfusing level but we weren't sure when he went in this morning.  He his not bleeding, just needing blood.  He went fifteen days without getting ANY blood transfusions!  His diapers have all looked pretty normal and he is growing so fast!

Today at the hospital he weighed 10.15 kilos, which is like 23 lbs.  he was an INCH taller than two weeks ago! I know it could've just been a discrepancy, but still....He is walking!!!  and he's so so cute.

Everyday, in a moment that I might get down about all of this, I hear that voice again saying "it's over."  It is a peaceful sound and it is not something that I'm reminding myself I've heard...I am STILL hearing it.  God is good.

Some quick recaps in our road...

Last July, we went to the hospital...we knew things weren't great and Ridge was basically about to begin fighting for his life.  His hemoglobin was at dangerously low levels and when he was scoped and biopsied, we got news he had MLT.  I didn't really know what a normal scope image would look like, but when I saw the pictures of Ridge's belly inside, I didn't know I was looking at something abnormal.  all over the surface were bumps, but they looked "normal" color bc all the blood had been washed away during the scope.  I asked how a normal stomach looked because to me his didn't look bad, and the doctor showing me the photographs said, "you see this tiny spot of pink, smooth surface? that's how our stomach looks....his all looks like this bumpy part."  weird.  surreal. scary.  and i'm sure his intestines look/looked the same way, they just couldn't get good pictures there...bc...well, there is "stuff" in your intestines... :)  so we began a horrific journey. life was literally turned upside down.  we went from multiple blood transfusions and platelet transfusions to a day of normal, then to an outpouring of bleeding, went to the ICU covered in our son's blood that he just kept throwing up....saw 8, 9, 10 red dirty diapers a day for a week at a time...slept little to none....came to grips that God might chose to take him from this earth.  Put him on a lot of medicines, the safest ones we could, and watched him slowly get better.  Moved to a regular hospital room and quickly watched Ridge decline again.  Witnessed him coding and almost dying...went back to the ICU where again we were covered in his blood....four huge red vomits in an hour....lots of red diapers....nurses pushing blood into him with a syringe bc waiting on it to go through an IV pump was too slow.  Witnessed him getting blood transfusions and being at exactly the same hemoglobin as before...gaining no ground.  Pushed more of the medicines...mostly the steroids....watched him get puffier and puffier and unrecognizable.  The bleeding stopped.  We made it weeks, still living in the hospital, without a blood transfusion.  As we came off the steroids and weaned a bit of the octreotide, bleeding resumed and we had a few more scary times, but none like those first two.  Finally we were able to go home, after five long months.  Ridge hadn't seen his house in five months.  He had changed so much. He was still on so many medications, and it wasn't two days home before we were back and in bad shape.  We were able to get the bleeding under control with high dose steroids again and he pulled through yet again. december 2009-present was filled with so much back and forth from the hospital to home I can't even count.  In may he got an immunization and bled horrendously.  He managed to keep it all down without vomitting that time but he was back to the awful amounts of awful bloody diapers.  He received 25 red blood cell transfusions in 10 days time and also received many platelet and plasma transfusions.  After waiting it out for five days or so, we had a somberish birthday party for him and sawyer and their friends, right there at the hospital...and then we agreed to start steroids again.  The bleeding stopped again.  After that, we fought a port infection all summer which caused him to bleed a lot.  We finally had surgery to remove the port.  Shortly after that is when I heard a voice from heaven, for sure, say, "it's over."  And we have been home for fifteen days.  Ridge hasn't needed blood in all that time.  And while our trials have been difficult and our  year has been hard, we have fought the good fight. We have persevered in our faith and our journey and we have preserved our son's life.  None of it alone.  Only by the grace of God.  Only by his hand.  his provision. his faithfulness.  He is enough. He is more than enough. He has carried us.  Will no more darkness fall upon us?  Who am I to say? Today may be our worst day yet. But it may not.  And the light...the Light always shines brighter than the darkness.  We are walking out of this darkness and back into some light.  Thank you, Jesus.  Thank you for your faithfulness, your provision of wisdom and patience and peace.  Thank you for preserving Ridge.

I have no more words.  I have nothing else that I could ever ask God to do for us.  He has been enough. I will want for nothing, ever again, bc nothing that seemed to matter before matters anymore.  My God is mighty to save.  And he has given us the patience of Job through this trial to watch and wait and trust.  And he has refined us.  And maybe he isn't finished.  But he has proven himself faithful. I am so glad we have been patient.

To God be all glory and praise!