hospital...but no bleeding

we've been back in the hospital since thursday....but not for MLT.  Ridge has RSV.  hooray! ugh. he isn't, er, wasn't, terribly bad when we were admitted.  he was wheezy that morning, and thankfully, even w/ the impending bad weather, our pediatrician let us bring him right in to give the RSV test...it was positive, and her advice and our preference was to just bring him in to be safe....yesterday he seemed muuuuch better,but today his breathing is more labored and his cough is worse.  he doesn't act like he feels badly, and his hemoglobin is still stable- in the 12's.  that's all i have to report. we thought we'd be going home today but now i think it will be sunday at the earliest.  hope all you oklahomans enjoyed your days snowed in- iced in- if you were so lucky to stay home from work.  snow days are no fun if you are stuck in a hospital room where you all begin to grate on each other's nerves but you have nowhere to go....they are also no fun if you have no power- thankfully, we got to keep our power-- but i know not everyone was that fortunate.  idk...no power but a well baby at home in the dark might be my preference to power and a sick baby in the teeny hospital room (but thankfully, we did get a big room again, but it's nothing compared to home!)

more to come later.  it's too crazy in here to produce a very coherent thought, though.  with a baby, a three year old, and a husband. :)  it's a zoo.  a fun zoo...but a zoo.

AAAH! i forgot- earlier in the week i updated the photoblog.  some of you have probably already checked it, but if you want some pics of ridgey at home, look over here.

i know.

so my last post was a little bit "woe is me" i guess, but it was and is how i feel, truly.  a couple of you left sweet comments, and i'm gonna roll with one of those today.  one of our dear nurses, who so lovingly even put a "welcome back ridge" note on ridge's marker board when we were readmitted to the hospital last time, commented, "for i know the plans i have for you, declares the Lord....." jer. 29:11.

touche. :)


i'm sad. i'm sad about work. i'm sad that sawyer had some disgusting drainage, cough, fever, nastiness all weekend, and now we all seem to have it, except no fever so far in any of us, THANK YOU JESUS! i'm sad ridge has all this nasty snot everywhere and has trouble sleeping and breathing because of it, and i'm sad his diapers are dark again, and i don't understand why his hgb isn't really changing much, but i'm glad of that.  i hate feeling like we live on the edge and not really being able to make set in stone plans with anyone.  i hate living with a bag packed, with my trunk full of stuff we'll need at the hospital.  i hate that all my makeup, hair stuff, meds, whatevers, are in a bag and i get ready, in my own house, every day, like  i am at a hotel, or the hospital or something bc none of my things are even where they go, bc if i put them away, i will most likely forget something when we do have to go back to the hospital.

i know the plans i have for you.

i don't like how ridge's medicine bag/pump falls to the ground every time i lean over.  i don't like how he wants to crawl but isn't yet, and even when he can, he will only be able to go 3 feet before he's out of room, bc that's how long the tubing on his line is.  i wonder if things will ever be normal. i know things will get better, but will they ever just be NORMAL!?!? i hate wondering if i should take ridge to the doctor, because if he has a fever, we automatically go into the hospital, so i can't wait until he has a fever to ever take him to the dr....but sometimes that's the only way you know something is up....so how do i know if the congestion warrants a trip to the doctor? he won't take meds for the congestion, bc usually babies don't take meds for that....he doesn't have an infection anywhere yet, that we know of, bc he doesn't have a fever....he can't take antibiotics w/o going to the hospital bc he will start bleeding on them.  i have no idea how to know what to do!

i know the plans i have for you.

sometimes nothing we do can get ridge to stop crying.  with a normal baby this would be annoying.  with ridge, it's annoying, and it causes you to question what's going on- is he bleeding? is it mlt related? is he sick? do you think he has a fever?  did you remember to give him that medicine earlier?  it's always something.  then there's sawyer, who is one of the lights of our lives, and who takes this all in stride like a true superhero.  but from our side of it, we worry about him being neglected and left out and us missing things bc of ridge and all our focus on him.  will he be any worse for the wear by the time this is over one day?  will my focus today result in a wayward child in the future?  does he know how much we love him?  does he feel loved? 

i know the plans i have for you.

will we be able to pay all these medical bills?  what if this lasts for years-- will we still be able to pay those bills? will we be able to have another baby one day? will we be able to buy a bigger vehicle when that time comes?  even if we have the money, will we be able to go on vacations?  does any of that even matter? will i ever be able to focus more on giving to others than worrying about us? sheesh.

i know the plans i have for you.

i could go on and on bc my mind and body are so full of worries.  but i don't want to seem like debbie downer here, because that isn't my  point.

my life is good. my life is also a crisis. and a gigantic question mark.  what's your life?  what are you facing?  we all have giants, so to speak- what's yours?  are you worrying about how to pay whatever bill? you don't understand why life seems to have dealt you a bad hand?  school/work/dating/marriage/money/debt/friendships/needs/whatever....is just ruling your life?  i hear ya. i get it.  i'm right there with you.  but maybe we all need to take a step back...and breathe...and i'm talking to myself here, so no offense need be taken....maybe some of those circumstances in your life were brought about by poor choices, and i have certainly made my fair share of those.....and if that's the case, you, and i, we need to get that junk out of our lives.  but maybe, just maybe, you have fallen on hard times for whatever other reason.  i don't know why. you don't know why.  but the weight of your  concerns and struggles is heavy enough to be tangible maybe.  i certainly can understand that.  but i can't make sense of it for you.  you can't either.  not yet. 

i know the plans i have for you.


"for i know the plans i have for you," declares the LORD.  plans to prosper you and not to harm you.  plans to give you  hope, and a future.
jeremiah 29:11


hope.  i like it.  and a future.  i love it.

good stuff.

soooo....

i'm sooooo exhausted. i could just sleep all night right here i think.....so so tired.  "right here" being at the computer (desk!).....sawyer's been sick, so i've been worried about ridge or any of us getting sick, and i've been catching up on knitting, taking care of feeding us all, running a few errands, and missing getting to work with students.  i've really had some "moments" lately. 

i love staying home with ridge. love it.  but my job is (was?) fulfilling.  i enjoyed seeing the students every day.  i loved teaching AP calc and seeing when students GOT it...or when they hung in there even though they didn't get it (which happened as often as not! and they'd be the first to tell you that).  i miss the other classes i taught, although (and i know some of those students read this- so heads up...)their behavior was oftentimes atrocious.....we still had a lot of fun.  i miss my coworkers.  i will never miss dropping my kids off at daycare, no matter how much i love the daycare-- most moms would love to be able to spend all day with their kids.  and just so this is noted- i LOVED sawyer's daycare.  CNW....best place ever!!!  such a sad day when we had to admit we couldn't afford it.  but oh how glorious God took  care of a new place for sawyer, and we loooove the 3 yr old program at M.Elementary as well!  but all in all, even if it HAS been six months, i'm not adjusted.  because i still miss my kiddos- the occasionally disrespectful ones, the super smart ones, the down to earth ones, the funky ones, the fun ones, the whatevers.  i miss them.  i truly truly do. 

i have found myself all weekend having little moments of tears because i don't get to see my friends at work.  i don't get to be working in my classroom...with my students.  i went to the school to clean out some things this week, and brandon pickedthem up for me...and even he admitted he was sad about it, bc he knew i loved working with those students. i know this is just what is...but i hate it.  i wouldn't leave ridge for a second....but i still hate it.  i hate having to work out other insurance. i hate having to think there's no way we could have another baby until i go back to work, which may be....never? who knows.  i don't.  i hate hate hate it.  it's so selfish for me to want everything to be "normal"...but that's what i want.  a little stupid american dream life.  i don't need a giant house or a pearl colored escalade that makes me drool....i love our house. my car is small but gets the job done.  i love my boys and my husband.  i love having time to knit and make jewelry.  i just truly truly miss working with students.  there were a lot of things teaching wise that were "burdensome"...but for the most part, the students themselves were not- i'm not saying i had ZERO trouble makers, or ZERO unmotivateds...hands down, i had some real pieces of work in my classes.  but i also had some incredibly ingenious students, some caring students, some super fun students, great helpers, and people who genuinely became friends to me and to my kids (as in, my actual biological children).  and i miss making those relationships.  i miss getting to be "mrs. cary"....not just the NAME, but the person.  aaaaah....i loved my job.  i hope one day to return.  to have MLT behind us, and two healthy happy boys and a third on the way (NOT now, ONE day!)....to be "livin the dream"...bc I'm selfish.  Because ya know, this is the road that has been laid before us.  WE have been chosen for such a time as this.  That doesn't mean I always like it, though.  It does mean I know I don't have a choice in the matter.  I know Who is in control. I know Who is taking care of us, and our every need.  I know Who knows what is best and that apparently, at this point, is me not working.  And I can swallow it.  Jagged little pill that it is, I can do it.  But I still miss it- I still feel lonely over it sometimes.  Because that was a huge part of who I am.  And even though i enjoy tasting this stay at home life...even though I don't know if I ever DO go back to teaching if I will STAY a teacher for...ever....I know I miss it.  I pray I have a more conducive to God's will attitude.  I'm not upset.  I'm just sad.  A piece of me, a part of me, was removed...kinda without my consent.  But who am I to give consent?  It isn't my choice.  We are given what we are given, and that's life.  And that's okay.  It's better than okay, I guess.  Because it's life.  and as long as I'm alive, life with Ridge, even if it's not how I dreamed it would be, is better than life without him. 

I gotta stop for tonight...or I'll be too upset to ever shut up. 

good night all.

quick post

A quick post before I sneak off to hobby lobby while ALL three of my "boys" are asleep.

Sawyer's sick. Family was supposed to visit, but to reduce the amt. of germs spread to them and to Ridge, we had to cancel-- so bummer for today.  I was also supposed to get a pedicure, so bummer for THAT too. AND we had a birthday party to attend. boo boo boo- being sick is super un-fun.

I wanted to post quickly to let you know we are still home. i'm nervous w/ sawyer being sick that ridge will catch something and be hospitalized again. Sawyer was running a fever, and anytime ridge runs ANY fever we will have to be hospitalized bc he has a central line, and they will treat ANY fever as a line infection, even if that's not what it is...which means antibiotics, which means bleeding, so ick for being sick.  Ridge is really super congested and has a hard time breathing and taking his meds.  He gagged up some blood yesterday while taking meds, which I feared meant another hospitalization, but it seems to be okay right now....so we are still home- almost two weeks!

Quick update just so you know- I am almost caught up on my custom orders of knitting and jewelry- one more week and I should be finished.  So, at the encouragement of several friends, I've opened an etsy store.  It's not even close to stocked yet, but soon I will have a lot of things there.  The website is momforsales.etsy.com and our cute little company name is See-Saw Ridge Productions.  Sawyer's name was harder to incorporate, but we got it in there. :) 

Hope you all have a fantabulous day.

annoyance...and relief

As I was reading my issue of In Touch magazine tonight (no I don't subscribe, but occasionally, when I go to the grocery store, I pick up a copy of some trash magazine like that- it's a guilty pleasure of mine that I can't justify ever...bc it's trash. and it's a waste of money.  but i did it anyway) I got so ridiculously annoyed.  I am sorta in the middle of the magazine right now, well not ME personally, but that's where I'm reading.   I would never be in this particular article-- people who are "too skinny."  Props to hollywood for not just bashing celebs that are "too fat"...but really-- yes, some of these people ARE too skinny-- but REALLY here's the deal-- in the margins, BOTH pages, the ad that was showing was for SLIM QUIK.  You want to tell us that this is how a woman should look/shouldnt look/whatever, then you want to be "concerned" for these girls for being too skinny, but you want to shoot a message that we need to be skinnier by putting that ad on THAT page?  seriously?  there's no way that was coincidence.  that was just STUPID. 

enough of that.

on to the relief part of my blog-

heartforhaiti.tv
you can donate here for haiti relief if you would like.  you can also purchase incredibly cute tshirts, and every penny of the proceeds of those sales go towards haiti relief.  they have men's, children's, and women's-- more than one style, and more than one color in some styles.  they aren't expensive, and really...who cares if they were?  the money's going to haiti.  haiti...haiti is poor.  and haiti needs our help.  you can do it.  come on people now...smile on your brother...everybody get together... :) enough.  but really- you SO can do it!

goodnight! crying baby needs his mama.

home....still.

wowza!  this is our second wednesday...in a row...to be home!  i'm not certain of ridge's status, so i don't know for sure how much LONGER we will be home...but still.  All last week, his hemoglobin was around 15.  Saturday it dipped to 12.9 (which is still GREAT, people.... 9-14 is all considered normal).  So we stopped the antibiotic he was on.  Sunday it was back up to 13.something and Monday it was 13.9, Tuesday 14.1, and then....Tuesday afternoon I just had this sick, sinking feeling.  Like, "it's back.".....not that "it" ever goes away.  So, I waited around on Brandon to get home, I went to buy some groceries, and I asked him to check Ridge's hemoglobin (I had to go buy groceries! For the first time in like SIX months!)....so, while I'm at Wal-Mart, I get a text saying hgb is 12.8.  This is still REALLY good, but from 14.1 yesterday morning....not a good drop.  The diapers hadn't really changed any, so it was just odd.  But I knew it- bc I had that feeling.  Mother's intuition is a freaky thing, people.  Did I blog about the time they took his picc line out, or gave him a shot or something and I wasn't looking, I was away from the bed completely, and I said, "did you just (do whatever) in his (right/left) arm?"  The answer: yes.  he wasn't crying, so that didn't give it away. I felt a pain in the exact spot (whatever) happened.  When he got his port...man, the left side of my chest hurt for days!  All of that, plus motherly instinct...weird.  This morning, the diapers still look the same....his hemoglobin was 14.1 again.  So I hope we're good.  On paper, things are super.  He still looks a little weak/sickly to me in the eyes.  So we will see what today brings.  I am so glad to be home.  It's really hard when things are iffy, though.  It's easier to be home when you aren't worried....and I'm not worrying myself sick or anything, I just have this sinking feeling that hasn't been present for about a week. 

Grocery shopping was good.  I love Target.  I love how they sell a hazelnut biscotti granola- WITH chocolate chunks- that contains NO dairy.  love that.  chocolate- FINALLY- and no worrying!  I also love how I will be getting to have an uncrustable for lunch today and I never buy stuff like that.  BUT I bought whatever I wanted at the store yesterday.  Because I haven't bought food for my family in...like I said...about six months!  So...we might be eating things we NEVER get to eat in this house....bc in general, I like to feed my family healthy stuff....so side note: those uncrustables I bought have no milk in them, which is for me, not my family, AND they are whole wheat.  so...yeah.  And....don't gag here....for the first time in almost SEVEN years of marriage, I made something for dinner I've NEVER made, but something that has been brought up more than once, something my husband loves....SALMON PATTIES.  Carys, rejoice.  It probably won't happen ever again bc that salmon in the can looks flipping SCARY but that's what we had...and they were good.  I'd had them before, but I'd never MADE them, bc well, the salmon looks scary to me and well, they are pretty greasy!  But even saw-man loved em.  We didn't sit down for supper till almost 8 oclock, but we had a feast!  If salmon patties can be included in a feast . I just mean, a lot of food.

God is good to us.  I am a little down/on edge right now.  But...He is good.  We are home.  we have BEEN home awhile.  i got to see some friends.  I got to get a pedicure.  I got to go grocery shopping.  WE got to go to CHURCH!  I'm drinking GOOD coffee, not hospital coffee-- blecccckkkk!  I'm getting to sleep in our bed!  snuggled up next to baby ridge!  And I get to see Sawyer every single day!  for more than an hour!  We got to go outside!  Ridge is smiling!  When I was stressed out last night, I ran into one of our fellow Yukon Church members and got to share that Ridge's hgb had dropped, which was such a blessing bc I know this woman prays for us and Ridge, and I had just thought in the car, God, I need to see someone who can be praying about this.  And...well...there ya go.  She knows who she is-- Thank the Lord I bumped into you!  No coincidence.  Plus Target is just really great.  I'm such a mess sometimes.  So small in faith.  So scared.  So sick of everything.  So ungrateful.  Thankfully, in the midst of who I am, God is the same as He's always been.  And He loves us- and well, that's all I got. For now.


I have a lot more I want to share from the heart, but he's getting frustrated.  So I will sign off for now.

i know it's pictures...and this isn't the photo blog...but still

I don't have a lot of writing to do right now.  I don't have a lot to say, really. 

Here's what's been going on, then I'm just gonna put some pics up of well, what's been going on.

medically:  ridge's hemoglobin has been good.  we came home w/ hgb of 13.1.  it was 15 the next three days.  then, it dropped to 12.9 and dark stools resumed....bc ridge takes an antibiotic on the weekends.  we had correlated this before but not really been able to get anything done about it, bc it "didn't make sense that the antibiotic would make him bleed."  obviously...that's what it was.  we stopped the antibiotic, and, ta da, he stopped dropping blood counts and stools are getting better.  but his immune system will be weaker.  because of the steroids.  w/o any prophylactic.

We came home last Tuesday.  This, today, is the first Monday we've been home since July 28th. 
We've been to a Miller basketball game.  We've been to church.  We've been up at my school.  We've gone on a walk around the neighborhood.
We've been....
normal.





well, for those of you who haven't seen a port accessed, here it is.  one day i will take a picture of what it looks like normally- just a little scar is really all it looks like.  the OTHER side of his chest, that's his central line  (the white cord line)...that's always there.  that's where he receives his octreotide infusion 24/7.  this was all when we were still at the hospital.

These pics are of Ridge the night we got home.  notice, he is on his belly sorta ready to crawl in the top picture.  in the bottom picture, he is seated.  these things occurred in that order.  he was seated, then he got in the belly crawl position, then, tada! he got himself back up.  good job, kid.

 

CHURCH pictures!  Ridge hasn't been to church in...well, a loooong time.  How stinkin cute!  He's dressed up like a little man....complete with some navy leather loafers! 

and here, below, i was practicing setting up the self timer....these aren't interesting, but they are kind of funny to look @ the boys' faces!  or their dad's face... :)  plus, you get to see what our living room sorta looks like since you always see HOSPITAL pictures.  and these...well...they are at our house, in case you didn't know WE ARE HOME!

this one isn't goofy, except of ridge.  I got that self timer perfect! 

and today, it was so nice outside, we went for a short walk.  ridge loved it.  we also got to use the double stroller my parents got us when Ridge was born.  I loved it six months ago, and love it today.  we just haven't gotten to use it much.  this first picture is all right....the second, sawyer was supposed to be looking "happy."  yeah.  that's happy.  good job, man. 

ridge had a GREAT time outside!

a couple of questions about ridge have come in- so here are those answers.  1. can you shave your legs in those hospital showers?  ha ha.  yes.  but not easily.  so it usually gets skipped.  and come on, i'm sleeping in the same bed with RIDGE usually. or i'm sleeping alone.  he doesn't care.   and i certainly don't.

2. when you say "spit up" do you mean he's spitting up blood like before?  yes, and no.  if i say he spit up i mean...like what all babies do-- barfy stuff after they eat.  but his spit up often has brown streaks in it or red clots in it, etc.  if he is full out vomiting, i'll say vomit, barf, puke, throw up, etc.  i think i answered that question well, but if not, please let me know (you know who you are, ya breadloaf).

if YOU have any questions- needstobebusy@yahoo.com

i'm outta here.

happenings

so we are home again.  since tuesday. we've come home 3 times...every time on a tuesday.  this time, we've been adventurous.  on the way home from the hospital, we stopped and had supper at IHOP.  all four of us.  yesterday, we stayed in all day.  today, i kept sawyer home from school to play with ridge, a former student came by and hung out with sawyer and ridge and i, and then sawyer, ridge, and i went to meet daddy at orange tree....where we all had some wonderful frozen yogurt with lots of toppings.  everyone who knows i can't eat dairy-- don't worry, i only had a teeny amt, and i rarely cheat.  so hopefully all is good.  well. 

that's really all that's been going on.  oh, today the boys let me clean out sawyer's room, where i gladly got rid of FOUR trashbags full of toys.  i told you, or maybe i didn't, that we have WAY too many toys.  FOUR BAGS?  and while i feel better, and the room looks better, none of you would even be able to tell i got rid of ANYTHING.

so...ridge has never slept in his crib.  we want the boys to have bunk beds.  and in six months or so, ridge would probably be in his toddler bed anyway....so maybe they will be sharing a room sooner than we'd anticipated.  so....i'm signing off here to google for some bunk bed ideas.  wish me luck!

two posts in one day? thanks to the shower, i think so!

i just had a horrible experience.  in light of all we've endured, i know it's nothing...but i have to share this.  have to.  gag. me.

apparently, it is much easier to get un-used to the hospital shower than it is to get used to it.  i was totally adjusted to our shower in 8146....even at times, desperate times, feeling sad and tired enough to want to sit down in the floor of the shower and cry.  i never did, mind you, but i was ready to, more than once.  but now...we're back.  and oh...8114...you are not so kind.  i have enjoyed my baths at home.  cranked the heater up, lit some candles, read a book, etc....and surely, surely, SURELY i can make allowance for a hospital shower...for a short time.  oh, but i don't know if i can.  not 8114's.  let me just walk you through this experience.  i will not scare you by showing you a picture of the shower.  but here it goes....

the bathroom....has two lights.  one above the potty, and one in the shower.  light above the potty? burnt out.  so...it's kinda dark in there to begin with.  shower curtain, obviously, icko.  even 8146 doesn't get a pass on that one.  ick. o.   so....the shower itself....1) the floor of the shower, while i am certain is not supposed to be white, is also not supposed to be that dingy grey color.  please...someone come pour bleach....or straight up acid...on that floor.  (DON'T WORRY- I HAVE WORN FLIP FLOPS IN THE SHOWER ALL FIVE MONTHS OF OUR HOSPITAL STAY...so don't barf too much here)....2) that little bit, no, those little bits, of soap on the floor of the shower...those aren't mine.  and i'm the first cary to take a shower in this shower...so they aren't even my family's.  so...i'm pretty excited i got to watch those stay...and stay...and stay on the shower floor, throughout my entire shower.  which is pretty impressive bc 3) the water pressure in this sucker is strong enough to wash the mud off a redneck's truck....and even though there's a knob to adjust the pressure, if you get it low enough that you aren't being pelted, the water is cold...i don't know why bc the pressure knob shouldn't affect the temp knob...but whatever.  this shower is a rarity.  it must be spectacular...somewhere.  4) all these hospital showers have these fold up seats.  ive never tried to open one bc i'm never in all my life gonna sit down in a hospital shower, even if i want to.  and i'm scared if i open one there will be some scary stuff in there.  but in 8114's shower....i don't have to be scared- it's seat is permanently open.  it won't shut even if i try.  it just slams right back down.  so i have half as much room to shower, so it's like a permanent game of dodge the wall, dodge the knobs, dodge the seat, dodge the curtain, or else i will just have to wash all over again.  5) the drain isn't great so ...that is sick to me if it happens in my own house, so i can't even type about it right now. it's making my feet feel dirty.  6) as soon as i go to turn off the water, before it's shut off, it immediately, at my touch, at my decision to turn the knob, becomes COLD.  FREEZING.  it has rapid response time.  i can't even get it turned off fast enough, it just gets COLD!  sick.  7) so now, i'm out of the shower, in the dark part of the bathroom, hoping i don't touch anything.  i hurry and get dressed, but i can't get out of the dungeon-ous bathroom because the door is all messed up and it tries to either stay open or lock me in there.
so, all in all, the only shower experience i've ever had that might possibly be worse than this, but i'm not even sure, is showering at the public pool when i was a kid.  i didn't go there very much, and really, it probably was less gross, EVEN if i didn't wear flip flops, which i probably did, but i know for a fact i at least had on a bathing suit, so yeah...it was probably less gross.


i'm afraid.

i think i shall have to be dirty the rest of our hospital stay.

helloooo!!!

well, finally after all the shenanigans in the world, i was able to log in so i could blog a bit.  seriously, took like twenty tries!  or five or six tries, but still, too many.

here's our updates....sunday, the dark poop was back. we came to the hospital. ridge DID have a hgb drop overnight but not a large one.  he still has not received blood bc his hgb is 8.4 so he isn't low enough to receive blood.  the poop has looked much better today.  not perfect, but better.  he spit up some last night, but that hasn't happened today.  i am hoping to go home tomorrow.  he is happy as can be and it seems such a waste to spend those kind of days here @ the hospital.

while no logic goes with this, i/we have noticed his poop gets darker on the weekends.  the weekends are when he is on bactrim, the prophylactic antibiotic.

hmmm...

some other questions i've been asked-- and if i forget yours, please ask it again, because my brain isn't perfect ever, much less right now....
1. why caffeine?  ridge is on caffeine bc of sleep apnea, which i personally do not believe he has.  so hopefully soon we will discontinue that.  because i'm not thinking it does a thing for him.  but, whatever.
2. how's sawyer through all of this?  sawyer likes attention, all the time.  so sometimes he acts out, and i assume moreso bc of this whole ordeal, but how do i know?  he might act out that much even if this wasn't going on, bc he's a ham.  and he loves attention, and he's a mess.  but he's a really good back scratcher and will play with my hair almost anytime i ask him to, and  he has the prettiest blue eyes you've ever seen.  so, i guess, even though sometimes he grates on that last nerve we all have, he's handling this pretty good.  he's learned a lot of terminology no other 3 year old, or few other 3 year olds, knows...and as far as he's concerned, it's normal for a new baby to grow up in the hospital.  so....i don't think he's any worse for the wear.  yet.  and i think we will be out of the worst of the MLT before he's old enough to be too affected.  but that's how i feel today.  I have days where i'm really upset because i feel like sawyer is missing out and we are missing out on raising two boys in a "normal" way.  but today isn't one of those days.  yet.  but if i keep typing about that it might be! so i'll stop with that.

the port works great!  here's a pic...or 3:

he's not really loopy here, he was happy, i just clicked the camera too soon.  he has his central line/broviac on his right side, and the port is the one all dressed up on his left.  and i love that stinkin port!

so...that's all i've got, but i wanted to update you guys and let you know what's going on.  keep those prayers coming, and feel free to comment or send a question/comment my way @ needstobebusy@yahoo.com

for those of you who follow the photoblog, an update is coming there right after i'm finished with this post here.

wanted some cake

I'm waiting on some pictures to upload...so thought I'd update the blog. 

Ridge still seems to be doing well.  His diapers are somewhat darker, but are not black yet.  His hgb was still stable this morning- 9.3.

I wanted some white cake.  We had white icing (store bought), but no cake mixes.  I love store bought cake mixes. Love them.  But we didn't have one, so I went out on a limb and decided to make a scratch white cake.  I love to bake.  But not cakes.  I like to decorate cakes, but I'd rather bake cookies or brownies or some kind of bars or pies or whatever, NOT cake...but I did it.  And it turned out to be deliiiicious.  It looks horrible, but it tastes GREAT.  I mean, this is a cake I'd be proud to serve my grandma.  Or your grandma.  Or anyone's grandma.  Except that I used store bought icing.  I'm not proud of that.  But i LIKE store bought icing!  And the texture of that cake- perfect.  Moist, but crumby...just like cake should be.  I win on this one. It's good.  Thanks to google, I found a recipe I love, and I figured out how to make cake flour when I only have all purpose flour.  Super duper hooray on this cake.

Ridge and Sawyer, twice this week, both took naps at the same time. suh-weet!  great great greatness. 

That nap...for the Ridger...was short.

A few questions I received:
1. are ridge's meds oral or given in a port/IV?  Only the Octreotide we mix ourselves is an intravenous med. So...all those syringes you saw in the last post?  That's all oral meds.  And he takes them like a champ. 
2. What's Ridge's favorite toy?  His daddy's cap. Hands down.  That's what he likes.  He also likes to play with his brother- no matter what Sawyer's playing with.  And anything that crackles/crinkles, Ridge loves that too- he likes the sound.
3.  What's Ridge's favorite meal?  Well, this one's easy, bc, although Ridge started baby food around 4 or 5 months of age, and he loved it all except the fruit, we had to stop feeding him baby food, because when he would start bleeding, it was hard to decipher if his diapers were darker bc he ate green beans or carrots, etc etc, or because he was bleeding.  So, while Ridge's favorite meal might be baby squash, or mum-mums or whatever is on our plate, right now he's stuck with being breastfed.  So, I guess that's his favorite.  That's all he gets! :)
4. Is he a momma or daddy's boy.  I'm not gonna lie.  He likes his dad.  But, hands down, this kid's a momma's boy.  He doesn't have a chance to be anything else- I'm the one who is always always around him!  But he'll take some good naps on his daddy.  And daddy can make him laugh.  But he really loves his momma!  I get the most smiles and the most giggles and the most squeals (well, maybe sawyer gets a tied amt of squeals from the ridgemater)....anyway, but all in all, the boy loves ME!  And I'm okay with that.
I think that's all the questions I got!  And 3 of those 4 are from KJ- so thanks for taking the bait and giving me some topics to discuss, mister! 

This week looks to be a busy week if we aren't back in the hospital.  We have something Mon, Tues, AND Wed. Barfo.

Peace out- I'm going to play Mario Bros.

medicine time!

So, I try to be pretty informative in my blog, but I don't know how much you guys really know about Ridge, the disease, how it is being at home, etc....so I'm going to post today about giving his meds.  I'm also going to invite you to either comment or email me if there is anything you'd like me to answer about Ridge- I will answer in a post.  Kind of like a FAQ's on the Ridgey-bear.  So....if there's something you want to know, ask.  And don't hold back, I don't care if it's personal.  So comment here, or email me @ needstobebusy@yahoo.com.

Okay, so the meds.  Ridge gets most of his meds at 9 AM and 9 PM.  He has an extra med on the weekends- a prophylactic antibiotic (bc his immune system is weakened bc of the steroids).  One of his meds he also gets at 3 AM and 3 PM, in addition to the 9 AM/PM.  His Octreotide is changed aroun 4-5 PM each day.  I check his hgb around 9 AM.  Shoot, I need to post pics of all THAT too.  One day.  But today, the meds:
Here's the lineup:   starting w/ top left and working my way down and back up and down, etc.... med cup, bottle of sterile water, prevacid tablet, box of caffeine, vitamin drops, big bottle is amicar, bactrim (antibiotic), carafate, steroid

same meds, here, but the caffeine box is open so you can see the inside- it's a weird setup.

ridgey waiting on all the meds, and also there are some pics of the meds all drawn up into their syringes....

and finally,

our bag of D5 and the little syringe of Octreotide we shoot into that bag.  You see those 2 syringes?  I only inject one into the bag of D5.  that's all it takes to control ridge's bleeding (well and the other slew of meds above)...but only that little .2 mcg into that big bag of 250 mls of D5.  that's it.

don't you feel smarter?

whew....breathe.

There's a peace I've come to know though my heart and flesh may fail.  There's an anchor for my soul; I can say, "It is well."  Jesus has overcome, and the grave is overwhelmed.  The victory is won,  He is risen from the dead.  I will rise when he calls my name-- no more sorrow, no more pain.  I will rise on eagles' wings, before my God, fall on my knees and rise.  There's a day that's drawing near, when this darkness breaks to light and the shadows disappear and my faith shall be my eyes.  Jesus has overcome, and the grave is overwhelmed.  The victory is won, He is risen from the dead.  The victory is won,  He is risen from the dead.  I will rise when he calls my name-- no more sorrow, no more pain.  I will rise on eagles' wings, before my God, fall on my knees and rise. And I hear the voice of many angels sing, "Worthy is the Lamb." And I hear the cry of every longing heart, "Worthy is the Lamb." And I hear the voice of many angels sing, "Worthy is the Lamb." And I hear the cry of every longing heart, "Worthy is the Lamb." I will rise when he calls my name-- no more sorrow, no more pain.  I will rise on eagles' wings, before my God, fall on my knees and rise. I will rise....



Obviously, I didn't just pen that myself.  Thanks, Chris Tomlin.  Oh....so this song, while powerful, has never been in my repertoire of favorites.  Until this morning.  When I was enjoying a cup of coffee, reading my Bible, and holding my baby with stable hemoglobin.  In my house.  And I was telling God I just want this to be over.   I want Ridge to be done with the hard part of the disease.  I want to live at home more than at the hospital.  This song comes on, and I just pause and listen.  To the whole thing.  And I know it sunk in with probably a different meaning to me than it was originally intended, but nonetheless. 

There is a day....and every day it's nearer...when this darkness will break to light and the shadows will disappear....AND...my faith will be my eyes.  How glorious to know that my faith, though often so so small, will become sight.  I can believe daily that God is going to walk us through this trial, that Ridge WILL get better, that this WILL end positively one day....but ONE DAY, and every day that day is nearer, that faith will be sight- it will be reality.  It will be over.  God will deliver, he will come through.  And on that day, and I'm sure many days between now and then, I will be on my knees, before my God, and I will rise to praise him.  Because He is worthy.  Because He will give us the victory.  It will be finished.  And my faith shall be my eyes!


you'll need to stop/pause the playlist at this point.....if you want to watch this.

it's a new day

and it's a new year.  we rang in the new year at the hospital.  we're still here.....been here since Christmas, and basically since July 28th.  That's okay.  Right now that's how I feel, though.  Ask me tomorrow. Then I might be ready to go home.

Well, I am ready to go home.

Sometimes, though, it's more convenient to stay here at the hospital.

Plus, while holding that baby, I've managed to watch the entire first season of Prison Break (good thing my husband got that as a Christmas gift...thanks MIL!).  Amazon.com is about to be getting some business as I order the final 3 seasons and the finale as well.  Next up after that I think I'll order all the seasons of LOST.  Since I've seen those anyway...but it will be good to watch them straight through.  Okay, enough of that.

What's up with Ridge-- okay, he's still bleeding.  I don't know why.  We are going to fiddle some with his medications soon, I think.  He does have a port, but a surgeon today said we had to wait 2 more weeks to access it.  I'm not sure I like that idea bc I know he'll need blood before then.  Like, as in, tomorrow.  Good thing he still has his EJ.  I am so ready to get out of this horrible part of the MLT.  Blood at least once a week.  Wondering if we need to change/increase/whatever his medications.  Wondering if some of the meds are even making a difference.  Hoping we are like MOST of the cases where the MLT really does get better in a year.  One thing I know, if the next five months go as quickly as the past five months, we will be out of this scary part in no time.  Hoping that is true.  Wondering how much we will enjoy the "real world" when we get out of here and GET to enjoy it.  Ready for the sunlight.  Ready for my baby to not have a permanent infusion of meds running into his little body.  Ready to put this all behind us.  It won't be OVER necessarily in five or six months, but it should be remarkably better, hopefully, if my kid follows many of the others with MLT.

SO....what do I think of 2009?  I'm glad it's over.  I'll hopefully be even more glad when 2010 is over bc hopefully we will be at a more normal stage in life where we will be living at our house more than at the hospital.  I think 2009 was a good year in that a lot of good things happened- we had our second baby, we had just moved into a house we love, we gained a nephew, found out we have another one (or a niece) on the way, I found some new hobbies, my students did awesome on their AP Calc exam, we joined a church we absolutely love, we celebrated another year of marriage....and then it only took about one gigantic bad thing to lose that focus-- multifocal lymphangioendotheliomatosis with thrombocytopenia.  I told you it was gigantic.  I remember being told on july 28th that the docs thought we'd be out of here within a few days.  Then...we lived here almost 5 months.  Ridge lived at home about 12 weeks, took vacation at the hospital, and went home for 3 days before coming back.  he's been around for close to 40 weeks, so his time at home is definitely majorly less than his time at the hospital.  I have spent a lot of time with my three boys this year because we've been cooped in this little hospital room....I have missed out on a lot with Sawyer I fear, but I don't really know that bc I am still seeing him most every day.  I have probably forgotten how to cook.  I have eaten more cafeteria food in five months than probably my entire life combined- and I'm a teacher.  I hope that Ridge is on the good end of things soon, bc I fear things like Sawyer's fourth birthday being celebrated in the hospital.  I don't fear Ridge's first birthday being in the hospital, because quite frankly, THAT won't be a shocker to me.  But I don't want Sawyer to have to live in the shadow of his brother forever.  It's so stupid bc I know he won't remember any of this and it doesn't really matter to him, yet.  And what's the point in worrying ALREADY?  I know, I know. I know.  But it doesn't change the fact I still worry.  So the bad might outweigh the good for 2009, at least on paper, but I am not oblivious to the overwhelming grace and provision God has given us this year, and that, if I could even think of all of it to write down, would incredibly overshadow the bad, of this I am sure.  We have had a community, family, churches, rally all behind  us and cover us in prayer and provision.  We have made a lot of new friends in our nurses and even our doctors.  We have become incredibly educated on the disease our son is facing and feel comfortable doing things i never thought I'd be able to do- changing his IV meds, giving him a gajillion oral medications, sticking his finger and checking his hgb levels.....knowing  by sight how well he is doing, even before checking his hgb or seeing a "scary" diaper.  I have much to be thankful for this year.  It is hard a lot of the time to let the good outweigh the bad.

I have been honest in my blogging this year- which is another hobby I picked up in 09.  I don't like it that most of my blogging is about Ridge- not bc I mind writing about him, bc I don't.  I know that's what most of you want to read, and it is an outlet for me, as well.  I just wish i were writing about all the hilariousness our life holds, bc I know, with crazy Sawyer, and Ridge, too, if we could just be a little more normal, I would have some insane writing material.  I want to be open in all I write-- our joys, our struggles, our whatevers.  I am grateful to have somewhat of an audience who reads this, and I appreciate your rallying behind us, following us via the blog, and praying for us.  Please continue to do so.

Although it has been a hard year, in which I have struggled immensely and failed often, our God is the God who has not changed.  His love and provision has not been altered based upon my lack of faith and absence of witness at times.  While my human and motherly nature wants my son to be free of this right now, and my family to be normal, like most of you reading this-- people who can take their kids to the zoo, the mall, the movies, the grocery store, whatever-- God didn't choose that for me.  And when we are out of this horribly dark time for us, a dark night of the soul, so to speak (Richard Foster, Celebration of Discipline, read it), we will be able to partake in those activities.  And we will love them all the more, and have a deeper appreciation for them, I think, since we have not been able to enjoy them as of yet.  And perhaps they won't really matter, bc we've learned to be a family w/o that stuff- not that any of it makes a family....My heart will go out in different respects because of this- at Christmastime, when we are out of this, I will wonder about who is having to live in the hospital at Christmas, who is fighting for their child's life at that moment.  I won't worry so much about the presents, I hope.  I hope that I will cherish these things, and ponder them in my heart, as my life goes on, that I will be better because of our hardship.  That I will reach out.  That I will provide for others as people have allowed God to provide for us through them.  That I will find people in need instead of providing for my family's wants.  That we, as a family, will be people of compassion who would rather teach our children how to love the people of the world around them and how to show Jesus to them instead of worrying about getting this, or not getting that.  I pray that we- Brandon, myself, Sawyer, and baby Ridge- would be crusaders of the gospel- a gospel of hope, faith, provision, grace, community, compassion, love, mercy, understanding....the gospel of new life.  I pray that Jesus would shine through us- yes, as we go through this tough time- but even moreso when we are OUT of this darkness, that we would be the brightest lights we have ever been- that we will have been changed forever by the hand of God over us during this-- that we may be the delivers of hope to families in need.  Just as many of you have been to us.  That is my heart's desire.  That my family will be beacons of hope to the world around...that we will see the needs of others well before our own desires.  That we will use the little resources we have to bring goodness and grace to others, not to ourselves.  That we would be living examples of how Jesus has taken care of us.  That we would be messengers of a bigger picture.  I hope that is, I pray that is, I need that to be true of us in our future.

God bless your 2010.