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!

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

updates

Updates...

First off, update on the family we are wanting to help.  It isn't June 1st yet, so you still have time to either purchase something (in which case, all profits go towards this so far anonymous family) or send a donation. In either case, you can email me if you need to contact me.  After June 1st, I will let you know how the response was (several of you have placed orders/sent donations....I really don't know how many people read the blog, and some orders have come in that are in no way related to this story, but the profits from those orders are going to help this anonymous- so far- family as well....anyway, I say several, but I suppose that's relative to how many people read the blog.  I'd say 10% of you have responded, but i may be setting the bar too high bc maybe not as many people read my blog as I think! ha)...ANYWAY, please take the time to respond with some sort of help. I know finances are tight-- of course we know and understand that-- you are reading a post by a woman who quit her job to stay home with a baby who incurs WAY more medical bills than the check she forfeited to stay home with him.  But our community, our friends, and even total strangers, have rallied around us and helped us in so many ways.  One of those ways has been financially, and with every penny that comes in (yes, pennies and other coins-- thanks to elementary schools in the community, as well as a coin war at my mom's school (props to you WHS!)), we are reminded of God's faithfulness, and of the goodness humanity still has.  So would you consider being one of those "strangers"-- a good samaritan of sorts-- to this other family in need?  Really, even $1, or $5, or whatever, will make a  difference, I PROMISE!  Here's a little more about the family, but I know even this will give some of it away, bc the world is too small for one of you to not know who I'm talking about when I give hints like this.  This is an Oklahoma family.  Tragedy came upon them really pretty suddenly with one of their children.  The tragedy then became three-fold when they found out this same tragedy actually affects EACH of their children.  I know some of you already know who I'm talking about, and I will go into more detail later, but please know I don't know the family at all so my details are limited.  The prognosis is not good, and the only medical hope they have lies in another state, and would be semi-long term as far as uprooting goes.  I'm about to spill all the beans so I will stop-- but I promise, this is a great, huge, desperate need, in my opinion.  It seems an impossible feat, or it would to me, if I were sitting in their shoes-- impossible apart from God.  But we are His hands and feet, so how can you help to meet this family's need?  Whatever you can do, however small, BDawg and I are asking you to do it.  I believe we are blessed when we sacrifice, but even if it isn't a sacrifice, and it's just something you are fortunate enough to be able to do, please do it!  I don't ask a lot from my blog readers, normally I just try to keep you informed, hopefully make you laugh, and hook you up with some prizes when I have some (which I do, I have three sitting in my garage right now...), but right now, I am asking you to please consider giving, no matter how "small" you think your gift is. 

Next update: OUR family.  Ridge is doing so well at home this time.  Four more days and we will be totally off the steroids (pray pray pray!!!  Those four days will be scary and the ones after those, just watching to see if he bleeds, will be even scarier!).  We had an upset yesterday when mobile Ridge got his central line pulled/stretched an unrealistic amount.  I literally was about to hyperventilate-- breathing super fast and loud and totally freaked out in panic mode.  BDawg rushed Ridge to the ER, where they xrayed and said it was still internally in place...the nurses/doctors/surgeon (i think) looked at the external part of the line and said it didn't look damaged, so they redressed it and sent him home. THANK YOU JESUS. I totally thought we'd be hanging out for ANOTHER holiday weekend in the hospital, awaiting a surgery date for a new central line. But thank the good Lord, no, we will not be sitting in the hospital this weekend.  We did have a good friend take some pictures of our family in our backyard.  I've mentioned it before, we are so blessed to have such talented friends!  We have several photographer friends, all of whom are very good at what they do.  So thanks to all of our friends!  I will let you sneak a peek at some of those pictures after I see them myself!

Sawyer is doing well, as well.  He's a mess-- all day long the other day,and often since then, he has called me Spits.  Yep. He'll say, "what are you doin, Spits?" and so on...it becomes ridiculous- but it is sure funny! He also told me in the car, when i asked him to repeat himself (I said, "what did you say?" because i didn't understand something he said) and he replied, "nothing. nothing that concerns yoooouuuu."  yeah.  smarty pants.  Smarty pants is getting new bedding for his bed- I ordered it this past week.  Not for the twin bed in his room currently, but for the full size bed in our garage-- he's moving up to an even bigger bed!

BDawg might be getting Lasik this week. He's blind as a bat and his glasses broke and his backups are missing a nosepiece, so his newest broken ones are working-- with superglue. ha ha ha.  I LOVE glasses-- on anyone.  I understand they are annoying to those who have to wear them, but I find them aesthetically pleasing.  But since i've known Bdawg, his momma has offered to help out with that procedure, and we've always declined, but it seems a good idea now, given our situation with Ridge and the fact BDawg goes to the eye doctor almost 3 hours away bc of some history with one of his eyes.  And 3 hours away just isn't gonna work with Ridge's condition.  So here we go!  Pray for all of that bc this week might just end with me having a husband who can SEE...but is less aesthetically pleasing to my eyes. ha ha, no i'm totally kidding- i just don't recognize him without glasses.  I mean, i KNOW who he is, but he just doesn't look like himself to me.  I will learn. 

As for me,I'm the same.  Working on my jewelry, crochet, sewing....yep.  Cooking breakfast more, super glad it's summer break for the hubs, and praying we stay out of the hospital as much as possible this summer.  Let's kick this MLT in the B-U-T (t)....i know, two t's, but one sounded better. 

Be a blessing today!
Alisha

get involved! you can do it!!! come on!!!

A few more days to get involved.  If you'd like to see some of my newest merchandise, head over to crazydayphoto.blogspot.com

short post--

after living through and continuing on in the circumstance we've been dealt with Ridge, we have definitely experienced grace and generosity.  and we have said we will never be the same because of it.  when a need arises, we figured we'd be ready to meet that need in whatever way we were capable of, bc it has meant so much and will continue to mean so much that you have met our needs and continue to do so.  i don't want to share too much bc this blog does get some traffic and i want to leave a little bit of a surprise element to this, but i do want my readers to know there is a family, who we do not know, but who is in desperate need of finances and a miracle.  i will share what i know about them in a week or so.  but here is what we are going to do. bdawg and i both feel deeply that we need to help.  because i have quit my job and because we rely on the help and support of our friends, family, community, and perfect strangers, we don't have a lot of resources to financially help this family we are burdened for.  so here's what we have pledged to do.  i hope and pray God blows our minds with the response.  we ARE going to do something for this family. i DO want it to be a surprise, so i am asking for some faith from you readers that this is something GREAT.  your heart will break at this story and you will be challenged by this family's faith.  so here's the deal-- everything i sell between 5/23 (today) and 6/1 (a week away, or a little over a week)-- all proceeds, every bit of profit, will go to this family.  so if you are wanting some jewelry, baby items, customized signs, whatever, check out my facebook page, "Seesaw ridge productions", send me a message and let me know what you want.  i'm talking custom orders, so you will have to wait awhile to receive whatever you buy.  but i will invoice you, let you pay, get the profits totaled, reveal the story of this family, then get to work on getting your items shipped to you.  if you would rather just donate, that's fine too.  i'll send ya a free pair of earrings if that's the route you choose to take.  email me if you don't have a facebook account-- seesawridgeproductions@yahoo.com  
if you send me an email, i can get you our mailing address so you can send in your payment or donation.  i can also invoice you via paypal if you prefer to donate/pay that way.

i promise, this story will break your heart, and you definitely want to be a part of this. i can speak from personal experience-- if you can donate $5 or $10 or $500 or whatever, EVERY penny counts.  here's how i think about it-- if someone gives $5 to us, that pays for one day's worth of Ridge's prevacid, which he takes EVERY single day.  Every little bit REALLY does count, so please know, there is no amount too small.

So here ya go, folks.  a week, or 8 days, to get your GIVE on.  let's see what we've got!    be a blessing.

alisha

not quite a hippie...but different.

Well, finally, on Thursday, we had  a great day.  Wednesday was looking up, Ridge made it a little over 24 hours without getting blood.  But that night, he had to get a transfusion.  Thursday, he stayed at his post transfusion hemoglobin level of around 13.4 all day long.  This morning, and this afternoon, he was still around that-- 13.2, actually.  

So we begin tapering the steroid dose tomorrow. The last phase of the taper will be oral steroids, and those are easy to go home on. So word on the street is we'll be home Sunday or Monday, if nothing weird happens.

Thank the Lord!  We are ready to be home.  I'm getting used to being at the hospital, and that's just not normal!

Ridge has been having some heart rate issues- he's been running too low.  I've watched him as he's napping this time and things have been much more normal. Weird.  Thankful for that!  He had an EKG this morning, no results yet. Consensus is, until we see EKG results, that it is either related to some sort of interaction of the meds he's on or it could be a positional issue with his central line.  Interesting to note, we de-accessed the port today, so maybe it had something to do with that. I just thought of that. Weird.  As a matter of fact, that is very strange coincidence.....hmmmm....We are going to reaccess it in a bit, so we'll see what happens then.  If it is an issue with his central line, we may have to do nothing, or we may have to pull it out a bit, or we may have to get it replaced. I'm trying to find images of a Broviac Catheter, which is what Ridge's central line is, but I don't want to post pictures of someone else's kid so you can google it yourself if you want.  Anyway, it wouldn't be a small feat to repare/replace this.  He had it replaced once before, but the surgeons took out the one he had, put a new one in the other side of his chest...this time, we don't HAVE another side of his chest to work with, bc the port is there. So we'd take this one out and put a new one in the same place. But I'm wasting time typing about it, because THAT is not happening, bc we are sure things are fine.  So pray that we are right about that :)

I have been sporadically typing this, and my brain is kind of elsewhere now.  But Ridge is much better.  That's the jist of it all.  He is starving bc of all the steroids he is on, and he is eating very well. He is moving on up past the baby food and to the table food, and we are figuring out what kind of milk he's gonna get...I'm still feeding him some, but he isn't very nice about it and he has six teeth and he's not as appreciative and friendly as one should be to their source of nutrition.  So I'm still giving him bottles of breastmilk but we are figuring something else out to give alongside it.  He has had some problems with pediasure, I am pretty sure bc it contains dairy.  So our other options have been: try whole milk, try toddler formula, then try toddler soy formula.  Well, trying dairy is tough because it upsets his stomach and no one gets any sleep at night.  So whole milk and toddler formula are not what we really want to try.  Soy formula is definitely an option, but formula is kind of expensive and Sawyer never had any and I would rather not give Ridge any if I don't have to (not knocking ya if you use it, do whatever you want-- this is just my preference).  SO....since he is old enough to drink things other than formula or breastmilk, we've made a decision.  A decision that is a bit unconventional and a decision that really wasn't given as an option in our dr. consults.  But it won't hurt him, so we're doing it anyway.  I have a friend, a couple years younger than me, who reads this blog, and who is a nurse pracitioner....and who is quite the momma.  You can read about her cutie pies here.  Anyway, after reading her blog all this time we've been in the hospital, I was exposed to the idea of....goat milk.  I know, it's not THAT far fetched, but some of you are probably gagging.  I just feel better about giving my kid an actual mammal's milk than something synthetic, if we can.  Goat milk is comparable in some ways to breastmilk, and it is easier to digest than cow's milk, and while I didn't taste it, BDawg did, and he said it just tastes kind of like milk.  Ridge didn't need any transition- I didn't have to mix part goat milk part breastmilk or anything...he just took it and loved it.  And slept better that night.  So we're rolling with it.  He's had no stomach aches so far from it, and we did buy the kind fortified with folic acid, bc goat milk IS lacking in that department.  It's not so weird that you can't buy it at Wal-Mart.  So while it is maybe a tad unconventional, I feel much better giving that to my one year old than giving him toddler formula.  Maybe that's just me, but that's how I feel, and I like being able to make those decisions.  If he doesn't grow soon, maybe we will revisit the idea of a more "complete nutrition" like pediasure...but I don't think it's gonna be an issue.  He loves to eat. He's gonna grow.  And the boy likes goat milk.  It's not as cheap as cow milk, but not too pricey, IMO, considering we buy organic cow milk anyway.  I figure it will cost us about $1-$2 per day.  But I might be wrong.  We will see!

So there's something for you to think about. :)

Thanks so much for all the prayers. No doubt we've needed them, and no doubt we've felt them.  I know they have been in abundance, and we ask you to pray as we begin tapering the steroids that Ridge would respond well and not become dependent upon them.  We are ready for this bleed to be totally behind us, and to have some good breaks between this one and the next one-- how about...like...a PERMANENT break from bleeds...that's what we want.  No more vaccinations for this baby, that's for sure!  With every day, I feel a little bit more like a hippie, or something earthy....breastfeeding him still, giving him goat milk, no vaccines, homeschooling Sawyer (possibly/probably/we don't know), yeah yeah yeah.  And it feels good.

what will the lucky number be....

I don't really have a lot of wisdom or insight or really anything deep to share with you.  We are pretty much just drained and tired of all of this, but I wanted to update you.

Ridge came into the hospital two weeks ago this Wednesday-- May 5th.  He was low on hgb, running about 7.7, so we got two transfusions, things looked good, we went home Thursday night, May 6th.  Friday, May 7th, he was kind of on "observation" bc we just weren't sure things were okay.  He had a great day but my insides just weren't settled about it yet, so I wasn't really surprised when later that night, he had a dark stool, we checked his hgb, and it had dropped about a gram and a half.  So we brought him in, and by the time the ER finally did his CBC, his hgb was 8.0.  Which meant he'd dropped 3 grams in about 12 hours.  It was another 3 hours before he got his blood-- I think delays like that are ridiculous.  He was obviously lower-- he was getting very pale, gaggy, and having super low desaturations on his oxygen levels.  He needed the blood when we got there, way before 2:30 AM.  So Friday night, May 7th, began a loooong road, that we are still walking.  Ridge got three transfusions from 2:30 AM Saturday through that day.  He got 3 more on Sunday.  Those were all 10ccs/kilo, or 80 ccs of blood.  Which meant in two days, he got approx. two to three adult sized transfusions, if my research is correct.  On Monday, he got one 80 cc transfusion, one 120 cc transfusion, and one 160 cc transfusion, which meant in that day alone he got almost 2 adult sized transfusions.  Until MOnday, his diapers had been mostly black.  Monday, his diapers became more maroon. Tuesday, he got 2 160 cc transfusions, Wednesday I think he only got one 160 cc transfusion, Thursday maybe he got 2, Friday it all broke loose and he had 8 or 9 red diapers-  he was pooping every single time he was awake. You haven't smelled stinky until you have smelled straight blood in a diaper.  I won't complain about poop smell ever again, or I will sure try not to-- because this stench is enough to gag you multiple times over and permeate the entire room.  It isn't pleasant to look at, and cleaning your child's dirty bottom is never fun, but it is so difficult to do so without crumbling when all you are cleaning is blood after blood after blood....and none of it is even his blood.  He has cycled through all of the blood we've given him, more than once.   I don't remember how many transfusions he had since last Thursday, but I believe the total from May 5th to today is 23.  23!  We are talking about probably over 2500 ccs of blood.  I am so weary of this.  Last Tuesday, we also tried taking him off food/feeding and upping his octreotide.  This is a standard treatment for GI bleeds, I think not only in MLT kids, but in older people too.  Octreotide limits blood flow to the gut, so to cut off the blood flow to the gut and then feed it, which increases blood flow to the gut, you can do some damage/"kill" the gut/intestines, and if those organs die, there's really nothing you can do to fix it. So anyway, Ridge didn't eat from Tuesday to Sunday.  We didn't see huge differences in doing that, which was disappointing, not only bc he couldn't eat, but bc it was supposed to work.  It usually works to stop bleeds.  So we had to decide what to do.  Because things were so bad-- worse than ever before, other than the fact he wasn't vomitting, we decided to put him back on steroids.  This is supposed to be a short term, 1 week mega dose.  We are hoping and praying that it stops the bleed and that we are then able to back off of it.  Please pray that with us.  I do not want my son on steroids long term. I hate them.  I don't want to make a decision today that will preserve his life now, but make it less normal later.  But that is what we are having to decide, it seems.  And any parent would do whatever it takes to save their child's life. So that's what we will do...but it is so hard to accept.  Steroids have awful side effects-- not only the horrible swelling that we saw in Ridge when he was last on steroids, but they also cause his bones to be less dense, allowing for more fractures, and the possibility of less mobility.  They can cause glaucoma.  They can cause heart issues.  They give him crazy high blood pressures.  They severely lessen his immune system.  We've learned this time around that we can no longer give him vaccines- even deactivated ones, bc that is what started this bleed.  Which means, anyone, family or friend, who is not vaccinated against things like flu/swine flu/childhood illnesses, will not be allowed to be around Ridge, bc he will not have protection against those things-- and that's regardless of if he's on steroids or not-- we can't risk getting him immunized bc I don't want to ever watch him bleed like this ever again.

So pray. Pray the bleeding would stop. Pray this pulse dose of steroids would be effective and we wouldn't be stuck on them.  Pray we wouldn't have to look at another drug to introduce to his body because I can't do it- the drug options that remain are not really possibilities in my opinion. I don't want them in my son's body.  I don't want to have to have surgery to remove a part of his stomach, intestines, colon, or wherever this bleed is coming from.  I don't want to make a decision today/in this time that seems correct, but fixes nothing, and in the end, I have to look at my son at age 10 or 16 or whatever and apologize for whatever side effects he has because I made the wrong decision when he was one and had a disease that he doesn't even suffer from anymore at that later age.  Just pray that this would end.  That God would heal him.  That the bleeding would stop. That we'd have wisdom.

I just don't even want to type about it anymore.  It is so frightening, frustrating, discouraging, disgusting, ugly, miserable, ridiculous, and for whatever reason...it is ours.  So here we go, down another fork in this road.   Please pray for us.  Pray for Ridge.  Pray that God would show his power to save, his power to heal, and that he would rescue our baby today, in this very moment.

the hospital makes me fat

i am addicted to zingers. all you people who love us, do NOT send me boxes of these-- not to be nice, or a friend, or to play a sick joke. i can NOT stop eating them....the vending machine has 3 flavors, and i don't care which ones are available, i love them.  disgusting.  we eat like trash up here, and sometimes, i like it.  i like it when people bring us good food too- so thanks if you've done that, ever before.  we aren't being forced to eat zingers and cornnuts, i'm just choosing to do that.  i sicken myself.

ridgers understands food now.  he is NPO, meaning no food/drink, and has been for the past 27 hours.  his octreotide has been increased to stop his bleeding, but the bleed continues.  his platelets are ridiculously low. he does seem to be responding better to his transfusions, so that is good news.  we have not been in a place this dark with the disease in about 8 or 9 months.  the boys are supposed to celebrate their birthdays in style on saturday. i guess we'll party it up here at the hospital.  if you were invited (sorry if you weren't.  i guess now you are), i guess don't show up at my house.  someone will be there, but it won't be the party crowd.  so head our way.  so he understands food- as in, when i was eating my hospital food, he watched me take every bite until i had to just stop bc it was too hard to eat in front of him since he can't have even a nibble.  oh my heart.

got some cool news about a study in an MLT girlie-- have requested the study be done in Ridge.  will keep you posted on if we find anything of any value that will help us to control his bleeding better.  i am excited to at least try this.  i am wary of new meds, and this would be one way to curb that suggestion for a while.  i'm ready to be done with this ridiculousness and get a normal life back.

this has been a hard week. taxing on emotions and on spirits and on relationships and some things that have been bad/stupid/ugly/ridiculous haven't even had to do with ridge's disease, or even really ridge.  no details are really available/i shouldn't post about this really....but suffice it to say when people are vicious or snooty or tattly or whatever towards people we love, it gets on my nerves.

ridge is waking. gotta go.

thanks for the prayers.  i see a zinger on the bed-- maybe i will eat it. i can't say no.