home...again....lots of updates

Well, I better just blog it all now because who knows when I will have another shot at this.

We got home today from a week in the hospital.

Ridge was bleeding. It stopped shortly.  We started the steroids again, probably too hastily.  We won't start them so hastily anymore.

He had a horrendous port infection and possibly a central line infection.  After six days of antibiotics running through both lines, we were allowed to come home.  He will continue to be on the antibiotics for five and a half more days.  This is stressful to me-- because A) his port is accessed at home.  and B) we have to run antibiotics alternately through the port and the central line four times per day.  (9 AM, 3 PM, 9 PM, 3 AM)....This takes an hour each time.  This was not a good enough reason to want to stay in the hospital, but it is a lot of extra stuff at home.  Home health delivered the supplies tonight when we got home.  The bag full of the antibiotics was huge.  We will have to do this 22 times over the next five and a half days.  sheesh. but we are home.

Wednesday is a big day for us.  We will begin an Octreotide wean.  We covet covet covet covet your prayers starting now.  I know most of you pray for Ridge daily.  This is a big time opportunity to please please intercede for him.  We want off of this medicine so badly-- he is on it 24 hours a day through his central line.  If we can come off of it....we can get that line out.  He will be able to walk, crawl, eventually run, and play, without a leash of tubing attached to him.  He will be able to take a BATH!  He has not had a real live tub bath since he was 3 months old.  That is almost a year.  By the time we get off of the meds, it will have been at least a year.  The wean will take 4-8 weeks, if it is successful.  Please please pray like you haven't before for Ridge.  This is huge in his mobility. This is huge in making his life more normal.  There is also some chance that this med is contributing to his smaller stature.  It could also be contributing to some issues we've been told Ridge has-- issues that deserve bathing in prayer.  His spleen has apparently been shrinking.  This is probably due to restricted blood flow.  His spleen is smaller than normal/smaller than it should be.  He needs that spleen to help fight infection.  This is a big deal to me.  Please pray that it IS the octreotide doing this and that we WILL be able to get him OFF of the Octreotide.  This is SO important to us!  We really really are optimistic and hopeful that this wean will be successful.  So please, come alongside us and lift Ridge up in prayer.  Let's get this baby one more step to normal!

Other news.  Monday is a big day for us, too.  Monday marks seven years for the B-Meister and myself.  B Dawg and I have made it through the first seven....which I've been told are the worst.  I can promise you our seventh was our worst.  Our fifth wasn't so great either.  This year has held so many hardships and obstacles because of Ridge.  It has been hard to be a normal family and a normal couple...it has been difficult to find any time to go to dinner together or even just sit and talk about anything other than Ridge.  Our life together has been greatly changed this year, and it is hard to type about.  I know God has a wonderful, unimaginable plan for us.  But it is difficult to remember that when your life seems so upside down.  I can't wait until ridge is off of the Octreotide and we feel like it is easier to get out and leave him with someone.  The central line is binding-- it makes it so difficult to leave him, because it is something we feel like our eyes need to be on 100% of the time.  When I am with Ridge, not a second goes by I am not thinking about that line-- I'm not exaggerating.  It rules our life.  See- I can't even type about our anniversary without coming back to this stuff.  We are ready for the difficult season to pass.  It's going to be a new world in a few years (or less) when Ridge overcomes this disease by the grace of God.

So seven years ago, B Dawg and I got married.  We looked like this:

Young...I know.  Time and life has been rough on us lately.  We've shared great moments- moments like the above.  moments like this:

and this:

 (courtesy Kelly Zoschke photography)

and this...

and this....

and this....

and this.....

and most recently...all the hospital stays.  and while a lot of this year has been more bad than good, here we are.  we've made it.  a promise is a promise-- and forever means forever.  so here we are, celebrating seven years.  hoping that we have seven more and seven more after that and after that...and that the hardest times we will ever face are behind us.  as time ages us, and circumstances rough us up a bit, may our faith remain in our God to hold us in His hands and sustain us in all things.  We may never look like this again:

but the hearts in those young bodies are the same ones that fell in love seven+ years ago....so here's to another seven, baby.

good times and bad...sickness and health...for richer or poorer....

we got this in the bag.

update

sorry it's been over a week since my last post.   things have been busy.

we were in the hosp. monday, got blood, came home. then again on thursday. then on friday, we came back to stay.  ridge began having a massive bleed and we were trying to take care of it low key, but saturday late/sunday early he vomitted and the only times that has happened, things got bad quickly. so we put him back on steroids, and in retrospect wish we'd have waited, but whatever.  anyway, he only vomitted once, and the bleeding had already slowed by the next day. it seems to be subsiding.  however, in the midst of all of that, we found out his port has a major infection, and his central line possibly has an infection as well.  so he is on a lot of IV antibiotics through those lines.  pray the infection is completely obliterated, bc otherwise it could enter his blood stream, and/or cause us to have to remove his line and/or his port.  we don't want to do that.

sawyer's getting in trouble, and waking up the baby, so this post is short. our life is so CRAZY!

take care.

behind us.

today was a first.  and i don't know why the blog is posting in this font. whatever. i'm gonna roll with it. bc i've been doing that today.  (ok, so it isn't posting in the weird font it was typing in...i just noticed that. sorry.)

i don't really know who reads this blog.  but can i just say, i love love love having fellow mommas of kids with MLT that i can talk to?  thanks to my pal kelly for getting some of us together on FB.  what a lifesaver that has been. and i know these women/families and i will forever have a bond, even if one day, this atrocity is...

behind us.


like today. today as we drove home from the hospital ON THE SAME DAY WE WERE ADMITTED (more on that soon!)...i kept thinking...let this be behind us. let it.

i want to scream in joy-- IT IS IT IS IT IS!!! but i know it might not be.  but for today. it is.

so all weekend, ridge had dark stools. but we can check his hemoglobin at home.  and it was above 10. And at 10 or below, we transfuse.  So....we kept him at home, even though we knew he was bleeding.  because at the hospital, all we'd do is sit there and wait for him to hit 10.  so why wait there? why not wait home? so we were brave little parents and did that.  but not without lots of texting/calling/facebook chatting my chiefs of staff, andrea and kelly.

sooo....the one thing we did do this weekend is up ridge's amicar.  bc...that's what kelly and andrea do. :) so we tried it. we didn't ever know to try that before. no, i didn't ask my doctor's permission. i just did it. and it slowed his bleeding. i didn't up it a lot, so it didn't stop the bleeding.  but today, when we went in to the hospital for blood....i came clean with my dirty little secret, and the hematologist thought it was fine, and actually prescribed ridge to be on a higher dose, and told us how far to up it when he bleeds.  so lookie there.  it was a good experience.  when we arrived at the hospital, and found out we'd be staying only...today...i was in shock.  but excited.  so while we are pioneering with that, may as well keep on pioneering.  so we did. we decided why access his port? yes, he has it to get blood.  but we aren't even staying the night. so we will stop his octreotide. for the entire blood transfusion. which we've never ever ever done. so for 3 hours, he didn't receive his continuous med.  and while we were in the itty bitty hospital room, he had two diapers.  the first, while dark dark, was not as dark as yesterday's diaper.  the second diaper, when i was deciding maybe we should stay the night, was even lighter....the Lord knew I needed some push in one way or the other...  so we decided we'd come home. and at our resident's suggestion, we decided not to stay around for a post transfusion lab.  what's the point?  he'll be above 10, so if we spend the night we may as well spend it at home. so that's what we're doing.  taking great strides to get rid of some of the burden of this disease. and today was great.  and we got in our car to drive home...and i couldn't help but think as we drove down the highway....as  the hospital got farther and farther away...that maybe, just maybe, we left some other things back there too.  for good.

at least that's what i'm stickin to tonight.

we try to live day by day. and this day, this day was a reallllly good day.

holy blog post, your retinas are gonna bleed....

wow. lots to cover.  list please, for my sake: lasik, middletons, bday, projects, giveaways

okay, i will just roll with that order.

lasik.  bdawg got his lasik the other day.  yesterday, actually. his post-op appt report: 20/12 vision, really good response for less than 24 hrs after surgery. he's driven, and he's walking around w/o glasses...weird.  i think that whole procedure is just...weird. and amazing. ridge knows it's his daddy but he sure is giving him some strange looks.  sawyer didn't even seem to notice anything.

we are sans one child this weekend bc he went to gibby's.  so it's weird having 3 people instead of 4 in our house.  ridge won't know what to do. 

middletons-- big post i've been wanting to get to.  okay. bdawg and i had already discussed what we felt like we should donate to this family.  we agreed upon the same amount, simultaneously, so that was kinda cool.  anyway, you guys helped us out.  big time.  i haven't put the pencil to paper very hardcore yet, BUT i can tell you with donations as well as purchases from our business, the total collected was somewhere in the ballpark of $1200.  Now, I have to take out business overhead, but that is still gonna be a greaaaaat greeaaaaaat contribution.  So way to go people.  We've been in the hospital, so checks haven't been cashed and some of you haven't paid for your orders because I haven't made them or billed you yet, so we aren't finished, but that's what we collected-- you guys rock! we are going to be able to send this family more than we'd anticipated bc of your help. thank you so much.

sawyer turned 4 this week. it was a big deal.  we were at the hospital and all, but it was still good. we got to come home that day.  and apparently, i don't have any pictures from that day as far as presents go.  BUT, he got a bike.  and some other stuff, but that was the big deal. he likes it a lot. yes, he has a helmet. i will be posting lots of bday pics over here.  well not LOTS. bc i didn't take lots. i know, i'm a loser.

projects....the latest projects: baby swaddlers and super awesome flower hair clips. i don't have a picture of the latter, bc i sold them all to the nurses while we were in the hospital! ha ha ha.  but once i make some more, i will post pics. they are the cutest $5 you will ever spend.  the baby swaddlers are also adorable. a friend of mine bought her own fabric and had me make her a couple. here's how cute they are (more pics at the photo blog):

 

$25  gets one of these, unless you buy the fabric, then i'll cut ya a deal.  I don't have either of these fabrics in stock, bc, as mentioned above, my pal picked her own fabrics. And if I do say so myself, they turned out quite cutesy!

crochet hair clippies...here's a gander. the only one i have is mine, and it's brown.  so here ya go. but i have LOTS of bright colored yarn, AND smaller clippies for smaller chickies!  i'm not mad in that first picture, regardless of how i look. :)  The clippies look WAY cute with a ponytail.

 

and finally. giveaways! i'm just throwing them all in together.  so here's how you enter to win.  comment here, and say which item you are wanting to win.  or just say you want to enter to win all of them.  if you just comment on the blog and don't mention the giveaway, i'm gonna assume you don't want any of the stuff, so go ahead and feel free to comment- i won't send you my junk unless you ask for it!  and soon i will have some new giveaways. NEW giveaways. soon.

first item up to be yours:

These old Clorox and Purex bottles may be worth something, or they may just be junk. I don't know. We got them in Eureka Springs when I thought one day I'd actually have a laundry room they'd look cute in.  But, alas, I've always had small laundry rooms not worthy of my decorating time.  So anyway, these glass detergent bottles and an old washboard are up for grabs.  The second picture is what the washboard says on it.  The washboard isn't big. Maybe 12" across.  If these are worth a lot of money, somebody stop me. I guess. They've been sitting. for seven years.   yeah. 

Next item:

3 burp rags.  These are NOT brand new.  In fact, they may have been sawyer's, i don't know.  They do not have any stains on them.  I wouldn't ever give these as a gift, but if you want them for your own kiddo, go for it.  Warning- the bandana one was formerly an OSU one, so a teeny line of pokes fabric peeks out.  So you sooner fans better steer clear.  If nobody wants these, they will become dust rags or trash for us.  Anyway, we're clean, people. So if you like em, they are yours. But they are used. 

NEW giveaways, soon.

Third item up for grabs (and 4th and 5th):

get your read on, peeps.  L to R: Jodi Picoult, Nineteen Minutes.  This is a good read. I didn't want to get rid of it. BUT, I never read fiction books twice. Well, almost never. I might be convinced to read the Twilight books again or to read some of Francine Rivers novels or some other Christian fiction or even non-fiction twice. But that's about it. Anyway, clearly I paid 9.99 for that copy, and clearly Ridge chewed the upper right corner of it.  Want it? let me know.  Nexxxxt...Time Traveler's Wife.  Great read. But not easy to follow. So if you like fast, easy reads, this one isn't for you.  But I loved it.  If you haven't read it before or seen the movie, there are a couple of sexual "scenes" in this book-- I'm trying to disclose all information-- I don't want anyone freaking out on me if you win something, then find it offensive.  So you were warned.  And finally, another Picoult book that I personally didn't like at all (sorry, Jodi Picoult...although I know you most definitely aren't reading this).  BUT, I'm giving it away, so who cares if you like it or not? It was still worth the read, I was just disappointed in it when I was finished. It isn't worth reading twice, in my opinion. 

So there ya go.  comment and let me know what you want to win.  If you dont' care, but you just want to win something, let me know.  you can enter to win ANY OR ALL of this stuff.  Although, even though I will randomly pick the winners, i'm probably not going to pick the same person for two prizes, I'm just saying.  Or maybe I will. 

Man, I have an awful cough.  Best of luck to you all! Don't forget to head over here to see birthday pictures!

birthday boy.

Tomorrow, my first baby turns 4.  He's such a big boy now.  He will forever be my first baby, though, and he still has his moments where it is easy to remember this. 

Sawyer Miles. I love you.  Here's what's so special about you, blue-eyed baby.

You are super smart. You pick up on things quickly and repeat things after hearing them only once.  You don't always hear what I want you to hear, and sometimes you hear what I do NOT want you to hear, and that is part of what makes  you a man.  :)  You are super sweet.  You will say to me or daddy, or Ridge,  "I love you" of your own accord, without being prompted.  You will say to us, or Ridge, "you're the best ever." You give hugs and kisses and have a great laugh. 

At this point in time you also throw a lot of rebellious fits and cop an attitude.  But I'm chalking that up to the fact you're 3/4 and that you've had a decently ridiculous past year.  You've lived in the hospital even though you aren't the one who's "sick."  You've learned words like steroid, carafate, octreotide, and MLT.  You've eaten more junk in the past year than you probably ever will the rest of your life- if I have anything to do with it.  And you take most of these things in stride.  You make my day at least once every day.  You love to be a helper and you have such a curious spirit.  You ask questions like, "will there be a potty in heaven?" and you recall your PaPa often, remembering heaven is where he is, and you are old enough to be sad about his death.  You say the sweetest prayers for baby Ridge, like, "Dear God, please take Ridge's MLT away forever and don't let it ever EVER come back so we never have to go to the hospital ever again. Amen." You are repeating "Let your words be few" every day bc I say that so much to you-- you inherited my blabbermouth.  You sing songs and dance a lot, and like to have tons of fun.  You think "vendin' machines" are super cool.  You think the nurses on the 8th floor only exist to entertain you and play with you.  You know how to germ-x your hands better than any 3/4 year old out there.  You know your way around the hospital better than some adults.  You are timidly brave.  You like to do things on your own but if I'm too far away, you don't like that.  You LOOOOOVE Toy Story and Ninja Turtles.  You can dress yourself. 

You are precious to us.  You are precious to God.  And I am so sorry your life has been rocked upside down this year.  But I know that you will only have fond memories of your time at the hospital.  One day, this will all be behind us and we will go camping and fishing and vacationing again like a normal family of four.  One day you will know what it's like to really play with your brother, even moreso than now.  One day you will not be afraid to go swimming and your brother will actually be ABLE to get in the water, and we will have fun at someone's pool, or at the lake, actually IN the water.  That day isn't today, and that day won't be tomorrow, but that day is one day closer with each passing day.  You have been such a trooper through it all and I love you more every day, big boy.  You are one of the greatest gifts I will ever receive.  Happy Happy Birthday, Spits.

ONE....

TWO....

 

THREE....

FOUR!

reveal

i will get totals to you when i know them.... but here is who some of you wonderful blog readers have decided to come alongside and help out.  i know some of you already figured this out, and it wasn't a secret for anyone's sake really except i didn't want the family to know until the entire fundraising was over.  but those of you who aren't from oklahoma or don't read the daily oklahoman even if you are from here...here's their story.  we are so happy to help the middletons from cordell, ok.  take the time to read their story. but have kleenexes handy, and if you aren't already praying for them, start now!
http://newsok.com/three-cordell-brothers-hope-for-miracle-after-being-diagnosed-with-deadly-disease/article/3463167