My photo
wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne


The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Sunday, November 29, 2009

i'm so behind!

I have much to blog about, so this will be sporadic.  I have a ton of pictures to post, and I will post some right here w/in this post, and I will post some over here.

Topic numero uno:  Ridge Update:


Two nights ago, Ridge was d-sat-ing some.  He usually does that when he bleeds.  For those of you who haven't lived in a hospital, here's what that means, at least w/ Ridge.  He is having O2 desaturations (i think is what it's called).  His oxygen levels were dropping.  Not perilously low or anything, but they were dropping into the 80s.  He usually does that when he bleeds.  He also was having low BPs, which is a sign of bleeding, also.  He had had a couple of darker greenish diapers, so we figured he was bleeding.  A CBC wasn't due for another day, so we just waited it out.  All day yesterday his diapers were yellow, so things were looking good.  He didn't have any d-sats last night, but he tossed and turned all night, so he didn't really have a chance to be that "out of it".  His diapers were greenish yesterday evening, so I wasn't sure what to expect "count" wise.  This morning, his CBC was this (I will post numbers in previous/current ratios).  Hemoglobin: 9.9/9.1, Hematocrit: 30.3/27.9, Platelets 61K/57K. So, obviously, sometime, he was bleeding.  We didn't see any major signs of it, and his mini poopy diapers have been mostly yellow today.  So it's kind of confusing.  He'll get his next CBC Tuesday morning, so we should know something more then, I guess.  In other news, he is sitting up well, and is usually very happy.  He has his first tooth peeking through the skin.  No one can see it but his mommy, but it is there!  He gets an MRI this week to make sure the d-sats are not neurological (which they won't be), he gets a full skeletal survey of x rays this week to make sure the bone lesions are still looking the same as they have in the past, and he gets his second flu shot.  We still have round 2 of the h1n1 shot in a couple of weeks, so we are still being cautious with visitors who are not vaccinated/have been exposed...since he is on steroids and has lower immunity.  That is what is ahead this week.  

Topic numero dos: Thanksgiving

We have spent the entire Thanksgiving break as a family of four up at the hospital.  I hate being here.  But I love getting to see my family.  Does that mean things aren't stressful in this little confined space?  No, there is much frustration from every angle, but it is still nice to be all together.  On Thanksgiving day, my mom and dad  spent a couple of hours here with us and ate lunch with us- mom made a bunch of food, as did my aunt Alethea (super thanks to Uncle David and Leslee for delivering- especially the PIE!).  It- the food and the time together- was good.  That night my sister and her husband stopped by and brought their contraband (their 9 month old) up to the room with them.  Here are some pictures of our Thanksgiving:

I was taking the picture.  That's why Ridge is all alone down there.  He was the head of the table.

Look how big he is!


Reid and Ridge...and Reid's momma's feet.


yes- he is soooo super cute. and yes, his feet say gobble gobble.


Topic Numero Tres:  In general update/emotional status/what is going on...

So you know the update on Ridge.  That's what I know most of you are checking on,and we sure to appreciate your support.  Here's what else is going on.  Obviously, I am finally getting sick of being here.  I am busying myself with knitting and jewelry projects, and hoping that somehow I can use that maybe maybe to make some extra money because starting Jan. 1, I lose my paycheck bc I will be taking a leave of absence from work.  I hope to be able to go back part time next year, but who knows what will be going on with Ridge then.  I am working on finding out what kind of nurse help there is as far as taking care of Ridge if I were to go back to work.  I don't think I could leave him 3 or 4 hours a day with anyone other than a nurse or myself.  Not every single day.  Maybe every once in awhile, but not daily.  I am stressed thinking about all that has to be ordered/organized/etc. before we are really "set up" to be @ home.  I don't like it that there will be monitors everywhere. I don't like that there are projects I want to do at home, and they are things that would keep me busy in the absence of my job, but I won't be able to do them bc I won't be drawing a paycheck. I worry.  Can ya tell? :)  I know I shouldn't worry, but I do.  We've always made "just enough" money it seems, so now it's frightening that is about to be almost halved.  Yes, medical expenses have been WAY less burdensome due to the support of our community/other communities/people we don't even know, etc.  Daycare expenses have been covered, thanks to the school system I work for.  I totally know that God will provide, but it is still frightening.  And I know that even though I love teaching, I am good at other things, and I could possibly earn a living from other things without sacrificing any time with Ridge.  I'm just not good at putting things into action.  Praise the Lord for Dave Ramsey, before I was even pregnant with Ridge, and our debt snowball that was paid off this summer.  It's nice that we only have to worry about a mortgage and our basic bills, and with two paychecks, that wasn't really a worry.  With one, I am afraid.  So I guess, for me, could you pray that I will have a peace that it will all be okay?  And I'm going to even go one step further- would you pray that some opportunity would open for me to make some supplemental income without sacrificing time at home-- either through tutoring or through crafting things, or through whatever comes my way?  Because I like working.  I do.  I wouldn't leave Ridge to go back to work under these circumstances, but I enjoy having something outside the home to be a part of.  

Whew, I typed way too much this post.  If you are still reading- bless you! :)  If you want to see some more pics, head over here to check them out.


Friday, November 27, 2009

background

oh i really want to blog but things are busy here w/ all four of us around.  it seems i should have more time to blog when i have more people here, but really, i don't.  so a few things.  cuteness abounds at crazydayphoto.blogspot.com  AND also, i'm aware i need to change the background on both blogs.  sorry.

ridge is still doing well.  great actually.  every day i'm getting more annoyed at having to live here instead of home.  i just think it's stupid and i'm getting incredibly irritated about it.

in other news- need a scarf?  need some incredibly cute jewelry?   i'm sort of being serious and sort of not...i've channeled my inner-creativity while living in this hole here @ the hospital.  i'm a scarf master.  and i made some ridiculously cute necklaces today-- i should post pictures.  i'm not lying- they are very very cute.  so if you want me to make you one...i WILL!
as a matter of fact, here are some pics:

quick update!

okay since the last update, Ridge has had 2 CBCs.  The first one:  his hemoglobin had been 9.8, then it was 9.9. Today, it was still 9.9.  gooood stuff.  his hematocrit continues to rise a little each time, and this time his platelets did not drop.  not a lot to report, but things are still looking good.  hope everyone had a happy thanksgiving.

Monday, November 23, 2009

drum roll puh-leaaaase


the only way this could look better is if, in my sleepy stupor, i had been thinking straight enough to take a picture of our two nurses- brandi and tina- holding these signs when they came in and woke me up.  they knew i wouldn't be mad, bc ridge's LAST cbc was.....9.2 and 27.5!  his platelets last time were 72k and today 66k, but we don't care about those yet!  PTL!  however, your day would've been even brighter if you  could see a pic of the nurses' faces at this news...or if you could've seen brandi's toe touch. :)
to see how ridge felt about all this, go here. but if you are reading this before 8 am central time, wait a few minutes so i can get the pics posted there.

yes. a toe touch.

loooove our nurses!

Sunday, November 22, 2009

cuteness!


I've mentioned how we have more than one talented photographer friend.  Here (click it to see the photos larger) are a few of my favorites that one of these talented friends recently took (you can see more of his work, and of our family, here).  Chris Copeland is laid back, and took our family pics in less than an hour, just free-styling it, letting us play and goof around.  No posing here- just livin our life while he snapped pics.  The semi-posed photo of us on the bench, well, I made us all sit down there.  So if you're lookin' to have a good time and just be yourself and be caught on camera, here's where you can find out more about Chris Copeland (who also looks a lot like Zac Brown)...Give him a holler if you like what you see here...you'll have a stress free, be yourself photo session and get some cool pics out of the deal as well.

Friday, November 20, 2009

pics

new pics posted of the early mornin thanksgiving lunch....

jinx???

Okay....i'm risking it.

at 6 pm wednesday night, we got to start the amicar-- the drug i'd been asking about at the recommendation of a fellow MLT mom.  ridge got his first dose then, his second at midnight, and his third at 6 am.  by 5 am, his poop was brown with yellow in it.  at 8 am, the same.  at 8:30, yellow.  every subsequent poop since then has been yellow to yellowish green.  i don't lie.  is it bc we started a new drug? i don't know.  the timing coincides perfectly but who knows.  i am anxious to see the results of his labwork tomorrow- we have gone to every other day CBCs and everyone is making every decision based on going home (do we put in a PICC line?  well, yes, he probably needs one, but no, we don't want him to have it at home, and that is our goal- HOME, so we aren't putting one in.  do we do the amicar IV or orally?  well, it will be orally at home, so we will give it orally here.  we will order you a home hemoglobin monitor, but we want to order it now so you can use it here so you will know how it works @ home and how it compares to a CBC.  etc. etc. etc.)

so if we're in the hospital five more days or five more months, at least every decision is working towards the ultimate goal of going home.  Ridge turns seven months old this next week.  Which means we are that much closer to being out of this first year, the worst year, of MLT.  Not that I'm not still praying for God to just heal him and take it away, bc i pray that every day.  but every day the Lord gives me with Ridge now is one day closer to a day when I can hold my son w/out wires and w/o lines and w/o meds and sort of w/o MLT.  give thanks.

Thursday, November 19, 2009

jinx....

i'm not posting bc i don't want to jinx what's going on.

but here's a pic to make your day.  we now have a puppy at the hospital.



Wednesday, November 18, 2009

a different set of colors

no, this post will not be about poop-- AT ALL.

today, i saw several different shades of these....







CUPCAKES.





Thank you, dear friend Crystal (love you!!!  loved you before, REALLY love you now!), for thinking of something so appropriate to send to meeeee!!!  How do I choose which one to eat first?


I went with some spice/pumpkiny one.

\
and I liked it.  so much, in fact, that I thought I was game enough to try to eat another cupcake...strawberry this time...right after eating that pumpkiny one.  not a good idea.  i took one bite and remembered- too much sweetness!  so the strawberry one rests on the table....i will get back to her later.

as for the other 16 just sitting there...i guess i will have to share.

mmmm....yay for sara sara cupcakes...yay for surprises...yay for great friends.





Monday, November 16, 2009

not today

Today is not me monday....but, i will not be participating.  Too distracted.  Ridge is having a good day, acting great, had a bath, looks as cute as can be in his "I love Mommy" shirt (we did have on the "I love Daddy" shirt...but...someone pooped on it.  And if the poop had been yellow, I'd have left that shirt on him.  However, the poop was this color, only a couple shades darker.  I'm getting so tired of it. Back and forth, back and forth.  Ridge spit up once today and it had a teensy speck of red in it.  Teensy.  But it was there.  We got our x-ray reports back from some abdominal x-rays yesterday, and apparently, if there really is "pneumatosis" going on in there, it is worse-- now not only is it in the colon wall but it is in the small bowel wall.  GUH-REAT.  I don't have a clue how worried I'm supposed to be bc the doctors say not to be "too" worried, but we don't know if this is even what is going on and if it is, we don't know why it's going on and we don't know how to fix it.  So frustrating!  I just want to curl up and cry about it bc it's just ridiculously annoying.  And Ridge acts totally fine, which is uber confusing bc he doesn't act like his tummy hurts and his stomach is soft, like it should be, not tender to the touch or full of air like would be expected with this junk.  So what am I supposed to think?  What am I supposed to do? Totally not worry?  Well...that would be easy to do if I didn't know about it, had never been informed about it...but once you open that info, of course I'm going to be concerned about it.  Especially when the course of action posed to usually try to treat it is no food or drink and possible antibiotics.  And...no food or drink doesn't bode well w/ Ridge as far as his bleeding goes.  So how do we decide what to do?  I don't like thinking about being in the position to just decide what is most likely to save his life.  I don't like it. I don't like it one bit.  It just all makes me sick.  I want the x-ray to be repeated (it is going to be) with the result that it was an error, more than once.  That Ridge doesn't have whatever they think he has.  That MLT is the most we need to worry about...bc I don't worry about that anymore.  

I don't have anything else to type, and Ridge is literally folding in half in front of me bc he is trying to sit up...unsuccessfully!  So I must go.

Please pray for Ridge.  Today I was reminded of the verse about two or three gathering in God's name and how He is there in the midst of us.  So please, make yourself the second, third, or hundredth person gathering in the name of God to take care of our son and to take this weird pneumatosis secondary issue away.  I don't know why we are having to deal with this too...I know God has a plan and He knows what will happen, but I just want this to GO AWAY.  So pray that it DOES!

Sunday, November 15, 2009

thoughts for today

I will post this later bc i want you to all read about the yellow poop, so I'll just save this, until I've given you ample time to read the post I just made.

Okay so I have nothing deep to say. I just need to get my thoughts down on some "paper."

I am watching the cutest baby Ridge you've ever seen- probably the only baby Ridge you've ever seen, read about, heard of, whatever.  He's just standing in his exersaucer, and yes, he is cute, even doing that.  He's just smiling.  And having some big brown eyes.

I, in no way, mean to sound whiney or gripey or ungrateful as I type this, but can I just say, not that you don't already know, that I am so sick of all of this?  Sometimes I feel like I am having a pity party for ourselves, but the truth is, I don't really think so, I just think I feel like I'm supposed to feel like when I cry or lament about this stuff, I'm in the wrong.  But who in the world would WANT this for their kid?  I don't doubt God is in control, I've always said that, through this entire journey.  But while that is true, and while that is what will carry us, it doesn't make me happy about this. It doesn't make me want this.  It does mean my life is completely different than I'd ever imagined.  Certainly not what I'd dreamed of-- not that it isn't so much more than I'd dreamed, as well.  I've only shared this with my husband, but...my entire life, when I thought of the children I'd have, I always imagined one of them being "special needs"-- of course I didn't necessarily think of a physical disease being the "issue."  And I wasn't imagining that bc that's what I wanted.  So when I say this is different than what I'd imagined, that's only a half truth, I guess.  I always, when I'd "see" my future family, I'd always see a little boy who needed something more from me than my other children.  But I thought I was just being weird, I didn't actually WANT that to happen, I didn't actually think that it would be truth.  I hope none of this story sounds just totally horrible, I'm just trying to be open here.  And I don't know if "special needs" will carry a stigma that offends some of you- I don't mean it to...I mean, obviously, Ridge has special needs, right?  He needs more than Sawyer needed as a baby.  His needs are "special-er" right now.  Some of you can attest to my fears with this pregnancy.  I don't think I ever really had any real complications with it, none that were as scary as I might've made them out to be, but there was just something kind of "off" about it during the first trimester to me-- of course, when  you are pregnant, you want a healthy baby.  And you probably always worry in the back of your mind "what if..."  But I remember one morning, I went into my friend Melissa's classroom to talk to her about somethings in the pregnancy (she was also pregnant), and I just couldn't stop tearing up bc I thought something horrible was going to be wrong.  Everything was always fine at the ultrasounds and at the doc. appts.  So I don't know....and when Ridge was born, I had no doubt in my mind that he was "fine." And he is...and he will be.  But no one can argue w/ me that he is completely "normal"-- bc he isn't.  And I love him all the more bc of it.  I don't even know where this post is taking me, I'm just free typing....

I know he is supposed to- he will- get better.  It is an unbelievable peace knowing that, and now having someone I can regularly communicate with who has walked this road and is continuing to walk it w/ her own son.  However, one more year, two more years, four more years, whatever...I KNOW it will seem like a blip on the map, I know it I know it I know it...but for TODAY, it is hard.  It is difficult.  It is the wanting to take your children to the zoo, or to see the Christmas lights, or on a walk around the neighborhood, or out to dinner, or WHATEVER...and not being able to.  It is worrying about missing the little moments of Ridge's infancy/toddlerhood/etc b/c of this disease.  It is missing the next 1, 2, 3, 4, whatever years of Sawyer's life.  It is not being able to be 100% present 100% of the time.  It is annoying.  And that is just how I feel.  You can agree w/ me or fault me or chastise me or encourage me or whatever you want, but this is just how I feel. Somedays, nothing phases me.  I am happy as the day is long and just roll with it....but other days, I just can't pull it together.  I want to say WHY US?  WHY HIM?  and some days I just cry.  That's the truth.

God has been ever faithful and thankfully, forgiving and patient.  It is difficult for me to "keep it together" in any sense of the phrase sometimes. I lose it- I lose my cool, I lose my patience, I lose my faith, I lose my trust, I lose my joy, and sometimes, I lose my "witness."  There is no excuse. There isn't.  Nothing I can say will justify my anger at this situation and the way I act out that anger, but it doesn't change the fact that sometimes...I am angry. And I believe it is okay to be so- but I want to respond to my children and husband and my God in a different way, even in my anger.

I am a homebody.  It doesn't bother me to be cooped up w/o a ton to do, bc I'm with Ridge.  I wish I was at home w/ Ridge, but whatever.  It does bother me that I'm not cooped up with my husband and my Sawyer.  And it bothers me that right now, my Sawyer is sick, and my husband is taking care of him alone, and I'm not sure he knows how to work our new thermometer :)-- I'm sort of kidding there- it doesn't totally bother me, but I am certainly not sure he knows how to work the thermometer.  But, honey, you are a good dad, and thank you for taking care of our sick little man.  Here's to praying it's just an ear infection.  Yes, I would be pumped if it's an ear infection. BC that means it's not something else.   Something contagious.  update/edit: it's something strep-throaty-like. ick.

Speaking of my dear husband, last night, before the fever hit the fan, we had a hot date.  I thought he was taking Sawyer hunting this weekend (no, sawyer doesn't shoot anything or even hold a weapon).  Instead, he and Sawyer showed up at the hospital Friday night.  We hung out that night, watching TV, making a poster for Sawyer's school assignment, just being a family.  Then Saturday, we lounged around and then he and I went downtown, since we're kind of already there anyway (downtown OKC)....There really weren't any good movies showing, but we went to see A Christmas Carol anyway.  Not that it isn't good, it was fine, but I'm just not ready to see Christmas movies yet.  Warning, though- it's scary.  Or I thought it would be scary to a child . Sawyer won't be seeing it.  And for heaven's sake, I might've even been scared of some parts if I saw the 3D version, so I'd skip it if you're taking your kids!  If they are young, anyway.  But it was good.  We then spent a little time @ Starbucks and walking around downtown.  Then we went and ate here.  He did this all on his own- my sister in law and her husband ate there the night they got engaged, but Brandon didn't know/remember that... men and details. :)  So...this was all Brandon- he did it all on his own.  Or so he said.  Binet', don't you tell me otherwise!  So, anyway, I was very surprised.  The evening held other surprises, but some of them I will just hold dear and "ponder them in my heart"-- anyway, Mr. Cary, he did good!  This date/concert was also a great surprise a few years ago....but last night's date was definitely in our top 3.  And it definitely held the most surprises.

Like how Sawyer got a fever while we were out.

Alas, I guess it can't be perfect.  But until Sawyer's fever showed up, and when Ridge and his MLT weren't on my mind, the night was pretty close to perfect.  Thanks to my sneaky sweet husband and a super kind person who sent us a card that was "fixed up" with a gift that was supposed to be used for a night out.  Well, that's what we used it for.  Thanks thanks thanks.

Forgive the randomness of this post.  I had to get it all down on paper.  I'm sure more will be written later as my thoughts continue to brew.

check it out!

POOP!




i know. you're pumped.



in other news, Sawyer left last night w/ Brandon.  He (saw man) had a 102 degree fever.  I'm putting my money on ear infection, but please pray for him-- especially in regards to the flu or anything contagious!  I don't think it's the flu, but we won't know for sure until he goes to the after hours clinic around noon today.  I don't handle illness well- mine or anyone else's...so pray that my big boy gets better so I can just worry about my little boy, who, today, had

POOP!

Friday, November 13, 2009

ready

poop


don't be too alarmed by the poop today.  it's still good, just green family instead of tan.  not yellow, though.


i'm so ready...


for us to go home.
to cook my family a meal.
to sit at our dinner table.
to have a conversation with my husband.
to get all the paperwork filled out- which means it has to be MADE/DRAWN UP-
to order all the necessary things to take care of Ridge at home
for Ridge to get older so this will be "over."
to spend time with our friends
to jump on the trampoline with my son
to put up my Christmas tree and wrap our presents
to clean my house (it isn't dirty- i'm just ready to get to clean it MYSELF)
to put the laundry where it belongs
to find the book i finished but can't remember where it got put at home
to live somewhere constantly- instead of hospital, car, home, car, & back again
for sawyer to stop being disobedient and acting out
to find a hobby
to work with students again
to see yellow poop every day
to have a baby w/out wires
to take a bath instead of a crappy hospital shower
to have a full fridge and pantry again
to stop feeling so unorganized...bc that is not me
to go to church again
to get on with life.....


so ready i could just scream.

Thursday, November 12, 2009

color color...

poop
depending on where you look for the poop- in the diaper or out the side of the onesie or what, the color is different.  depending on whether you look at the actual poop itself or all the liquidy "poop" that comes with it, the color is different.  depending on how tough your stomach is, some of you might be throwing up right now after that last sentence.
photos are here-- but not photos of poop! (thanks, amy!)

Wednesday, November 11, 2009

smiley baby

earliest post: 10 a.m.ish...


Ridge's counts are holding fairly steady since yesterday.  Platelets continue to go up.  


Comparison report yesterday/today:
 hemoglobin:  11.7/11.4
hematocrit: 34/33
platelets: 80k/98k

poop...and lots of it.


Ridge is full of smiles and squeals lately.  He is becoming more interactive and tries to take in all his surroundings.  And he smells like rice krispies treats.  No new news today.  The doc hasn't been in, so if things change, I will update later.  


In other side note news- the reason ridge smells so delicious is bc of his bath soap.  No one is paying me to say this, but I can not get enough of the Method products Target sells.  I sell Arbonne, and I love it love it love it, and the baby line is GREAT, but with Ridge being in the hospital, I am having to sometimes buy other things because it is faster than waiting on the Arbonne to arrive by mail.  I love the Method household products but hadn't tried the skincare.  It's all natural and so so good!  The baby line smells of rice milk and mallow-- thus the rice krispy-ness.  Sawyer has some toddler kind at home but I haven't given him his bath in a while so I am not sure how it smells.  The adult kind...mmmm....white tea or olive leaf, either one, is a winner.  And all the hand soaps- great.  Can't get enough! Natural, good for us, smells good, and  while it is pricier than the store brands or the non-natural brands, it isn't too pricey for its "class"...and  I'm a big believer in using as much natural stuff as possible, so the price doesn't really bother me...and it really isn't ridiculous.   Other than buying my first loved products- Arbonne- there is no other skin care I would use for my kiddos!  Not that there aren't other good organics or  natural ones out there- there are.  But I loooove this Method business!   Plus I get to smell a really cute rice-krispy treat all day.


Sorry for the sidebar.  :)


10:26 a.m.--  update-- poop (please note i'm blogging the color change...i dont just randomly like to type the word poop.)



Tuesday, November 10, 2009

today today....

For those of you who prayed for Stellan yesterday, THANKS! you can check mycharmingkids.net to see how AWESOME things turned out!

Here's our updates :  The poop, today, looked super  brown- which isn't yellow, but is better than black!

His hemoglobin is dropping some still...moreso than normal. BUT he is still well above transfusion level, so we are hoping things slow down a bit.

I think that's about all the updates.  His IV is still working well, in case we need it.  He is sitting in his bed playing.

He...I'm referring to Ridge, as if you didn't know.

So all in all, things seem good.  I have asked several times about trying a new drug that was recommended to me....everyone is hesitating.  I'm ready to try it so we can see if it works, and monitor him HERE, so we can know if it works or not...I want to start soon so the monitoring can begin...so we can hopefully be home at CHRISTMAS.  So please pray that would all play out the way it's supposed to...not that it would play out any other way, of course.  I really really would like to be home at least for one day...the 25th of December.  And some of you better watch out bc that is a LOT closer than it feels like it should be.  It's just around the corner!

A few more things I forgot the other day--
our family pictures are up. thanks, copelands, for hanging out with us that day and for doing that for us.

thank you, sonic in yukon, for doing the fundraiser a couple of weeks ago for Ridge.  I forgot to mention it on the blog, but i did NOT forget it!  So nice of you.  thanks thanks thanks!  overwhelming.

To blog readers Tami and Josh who sent the care package- love it. so sweet, so thoughtful, such a blessing! Thank you for taking the time to be so good to us.

Have a great day! As always, pray for yellow poop!



Monday, November 9, 2009

serious times

ridge is doing pretty great right now.  thank you for your continued prayers.  keep them coming! i am asking again today for you to pray for mckmama and baby stellan.  super scary stuff for them right now.  her blog wasnt updated for today yet, but you can read her tweets (twitter) in the left column of her website.  soooo scary and i know how it feels watching your helpless child, feeling helpless yourself.  please pray for them.  pray stellan would survive all that is coming/is here.

Sunday, November 8, 2009

mozy on over

Ridge is doing better today.  If you are having a lazy Sunday (or Monday or Tuesday or whatever day you read this) and are wanting to see some super cuteness, you know where to find it.

Friday, November 6, 2009

good things

Let's talk about some good things that have happened, some kindnesses that have been sent our way.  If you've done something nice and I forgot you, please know it of course was not intentional.

1.  The palm trees that Will, blog reader and nurse here @ the hospital, made and hung up for us...well, they are falling down.  I have put them up, but haven't had time to put them up again.  They still look good, just half trunkless.  Regardless, Will stopped by today and brought me a giant brownie that was excellent.  Even if it looks like I haven't been taking care of the palm trees, I have! They are taking on a mind of their own! Thanks, Will!

2. A friend of my sister in law sent us a care package.  I haven't seen all of it bc it is at my house but my mom brought up the parts that were for the boys- a sweet little bear for Ridge that says a prayer-- he really likes it! and...NINJA TURTLES for Sawyer.  Of course he loooooves that.  A super nice note for us as well as some more goodies @ home.  Thank you so much, Tami and Josh!

3. Weeks ago, another friend sent oodles of noodles up here-- chicken and noodles....it was just when the weather started to turn cold.  they were superb.  and thinking about them now is getting me hungry.  thanks, zoschkes!

4. Speaking of meals, a super duper set of friends provided us with six homemade frozen meals that can be microwaved.  This has been a great blessing and allows us to either eat something other than cafeteria food OR allows me to not have to go all the way downstairs if I don't want to leave Ridge for very long or if the nurses are busy at the time and can't watch him.  This same set of friends tried to get us to leave our baby all alone tonight to drag us to a Jeremy Camp concert.  Just kidding...they wouldn't want Ridge to be alone.  They did offer two tickets to us, though.  Ridge is having a rough week, so we can't leave him right now, but still...Thanks, Perkeys.

5. Yukon raised a lot of money to help us with medical bills through WISH week. So humbling.  I don't even know what else to write here-- so imagine me saying THANKS in the biggest font possible, please.

6. Speaking of Yukon, I have two co workers who are so faithful to visit and several others- teachers, substitutes, support staff- who are faithful to text, email, facebook, etc. checking on us, offering to help us with many different things, whatever we need.  To all of them- too many to name and I do not want to leave someone out for sure- but you know who you are...a gajillion thanks to you.  You have proven your friendship- not that I needed you to.  And you can know, if there is ever a time I can repay you, I will.  I hope none of you ever find yourself in a difficult situation like this- but the kindness you have shown me will come back to you I promise.  You are the best.

7. I got a phone call from the mother of a little boy with MLT and it was so encouraging to speak with her.  She offered some advice that our doctors are considering.  She gave me her phone number for any time I need to visit.  I know there will be a day I need that.  So thank you, Andrea.

8.  We have the best nurses around.  I really can barely type this without tearing up.  I love our nurses.  When Ridge is blowing boogers out his nose and I can't stop crying bc he's getting stuck with needles for an IV, they keep it together and go get me kleenex.  When I'm looking at things that are scary to me and are scary to them bc Ridge is usually a pretty easy patient, they keep it together.  When someone has to advocate on my behalf, they do it.  If they have to be assertive with pharmacy or doctors or whoever to get Ridge what he needs, they are.  It's hard to put into words how I feel about them, and I know it's "just their job"-- but I hope they know that to me it is so much more than just their job.  They often make or break our day (MAKE! We do not have nurses that break our day!)-- but seriously, the NURSE does make the difference in the day.  Thank you for your love and compassion and how much you care for Ridge.  And thank you for letting me talk your ears off and pretending to be my friends! :)  We, or at least I, seriously could not make it through the day without you.  You are the best.  So to Tina, Tera, Micah, Laura, Breanna, Vanessa, Vera, Brandi, Brooklyn, Tina Marie, Rebecca, Mary, Billie Jo, Susan, Lauren, Vicki, Thomas, Sarah, any other nurse we might've had once and I've forgotten and all the techs and anyone who has ever helped because I know I don't know all of your names and please don't be mad if I forgot you here....WHEW.  THANK YOU.  You are IT.  You make our day, every day. Thank you thank you THANK YOU for loving on my son.  And for bringing me my towels so I don't have to dry off with a washrag.

9. We, for the most part, have great doctors.  I don't have a lot to type here, but I do want to recognize them.  And the majority of them have a great interest in Ridge.  And I appreciate that they are trying to do what is best for him.

10. Thank you to the PICC line nurse who was able to get an IV in Ridge today.  Yay, Gretchen.

11.  Former students have been so encouraging to send me messages and keep asking about Ridge.  Families of students have been so encouraging to send cards and donations....I don't have words to express how much that means to me that I mean enough to you and my family means enough to you that you are willing to take the time and use your resources towards us.  Thank you.


So many others have been good to us- our church family, our actual families, our friends, strangers, our community.  So to anyone I've forgotten- know that it's just bc I'm sleep deprived and sick of having to fight this disease.  I am grateful for you.  Thank you for the notes, the calls (that I can never return bc it is just near impossible to get a chance to do so- sorry!), the texts, etc. etc.

We are loved, and we know it.

and so are you.



stupid veins

Ridge is in the treatment room right now enduring an attempt at an IV.  I swear I can hear him screaming all the way in here, and I'm not lying, and I'm not wrong.  Horrible.  I know, I'm probably horrible for not going with him, but I can't stand hearing him scream and cry or watching him get stuck.  I know the nurses are taking good care of him.
He is holding his blood counts better today- still not holding them WELL, but better.  He usually drops .1 or .2 a day on his hemoglobin and he is now dropping about .5 per six hours....the diapers don't really look much if any better today.  The spitup has been minimal today.  Anytime he gets really worked up and cries I worry about what that might do to his bleeding.
There isn't really anything else to update.  Hopefully they will return with an IV in his arm.  I doubt it, but only bc he rarely has veins close enough to the surface and cooperative enough to set an IV.  The nurses try try try and they are really patient and really good- it isn't them.  He just is a tough stick.  And as soon as you lay that boy down he knows what's going on.  Put the tourniquet on him and he goes BALLISTIC.  I hate hearing those screams.  I can't hear them anymore so I wonder if he's stopped...I wonder if they got it.  I sure hope so.


Thursday, November 5, 2009

uppity up

What's uppity up? The steroids.  Ridge is still having BLAAAAAAAAAAAAAAAACK poop and this morning spit up (NOT threw up) some RED blood, not with milk or anything, just blood.  It wasn't a lot, but it also wasn't watered down.  It was blood.  His heart rate has been running higher, about 20 bpm higher, than normal, which is a good indicator of bleeding.  They have the PICU ready for us if we are to go there.  Right now, we are watching Ridge closely here on the regular part of the 8th floor.  He will have an Istat done in a minute- it checks his hemoglobin and hematocrit within a matter of minutes.  This will tell us if he needs blood.  That's all I know, I think. I typed this in about three different time segments, so forgive me if I was sporadic.


Wednesday, November 4, 2009

God Calling

I picked up the devotional book "God Calling" when I was in college.  I don't know a ton about it, so whatever your stance is on it, well...whatever.  I'm going to share with you something I read from it last night, and another something from this morning.   Very interesting history of the book at:  http://www.twolisteners.org/TheStory.htm  You can take it or leave it, I know it isn't the Bible.  I just know a lot of times, what I read in it is paramount to what I am facing that day/that time in my life.

November 3

No Limit
Unlimited supply, that is My Law. Oh! the unlimited Supply, and oh! the poor, blocked channels!  Will you feel this, that there is no limit to My Power?
But man asks, and blasphemes in asking, such poor mean things.  Do you not see how you wrong Me?  I desire to give you a gift, and if you are content with the poor, and the mean, and the sordid, then you are insulting Me, the Giver.
"Ask what ye will and it shall be done unto you."  How I can fulfill the promise is My Work, not yours, to consider ... Have a big Faith, and expect big things, and you will get big things.
Ye ask, and receive not, because ye ask amiss, that ye may consume it upon your lusts. James 4:3


How powerful is God, how inspiring the thought that my prayers, although I do not see HOW God can answer/do these things....well, they are enough, bc they are all I can offer.  It is God's job to figure out the HOW. He already knows anyway.  So then...I read this today.


November 4

I Am Beside You
In thy presence is fullness of joy; at thy right hand there are pleasures for evermore.  Psalm 16:11
Do not seek to realize this fullness of Joy as the result of effort.  This cannot be, any more than Joy in a human friend's presence would come as the result of trying to force yourself to like to have that friend with you.
Call often My Name, "Jesus."
The calling of My Name does not really summon Me.  I am beside you.  But it removes, as it were, the scales from your eyes and you see Me.
It is, as it were, the pressure of a loved one's hand, that brings an answering pressure, and a thrill of Joy follows, a real, and a joyful sense of nearness.
Restore unto me the joy of thy salvation; and uphold me with thy free Spirit.  Psalm 51:12

I asked God this morning, after reading this, to remind me that he is here.  That he is with us and walking beside us and even ahead of us in all of this.  So many people have offered encouraging emails, texts, fb messages, comments here today.  We need it.  One message on my fb today- echoing what I read this morning, and answering the prayer I prayed that God would just remind me that he is right here with us and before us:

Steven Curtis Chapman, who released his new album, "Beauty Will Rise" has a moving song: "Whatever road this life takes you down, He knows the way to wherever you are; He knows the way to the depths of your heart; He knows the way;... He's already been where you are going. Jesus will meet you there."


(thank you, Midge, for that message)

Forgive me for all the font issues tonight, I don't know what is wrong with the computer.  Don't have the energy to fix it.  

Thank you to any of you who have offered a word of encouragement through the blog or email or whatever.  Thank you thank you.

we'd rather have black.

Ridge has not been allowed to eat for almost 24 hours.  This always makes his bleeding worse.  This is also supposed to help the other problem we are facing- the pneumatosis.  This morning, the diaper wasn't black. It was maroon.  This is getting to be ridiculous.  I have been asking God to remind me that he is right here, with us, even closer to this than we are.  I know this is true.  I know he can see what is going on in Ridge better than any doctor or mommy or x ray.  I need him to fix what is going on in Ridge.  I need him to do that.  I feel so lost because it seems that a lot of what they can do to treat the MLT bleeding right now will work against the pneumatosis, which has a far worse outcome than the MLT seems to have.  Not feeding him is going to hopefully help the pneumatosis, but probably not if it is making him bleed more bc to me that seems it would be more irritating to the bowel.  I don't know. I don't know anything about any of this it seems and it is so frustrating.  Why in the heck do we have to have this OTHER stuff going on?  Really?  That just seems so ridiculous and .... pointless.  I know it isn't.  But i'm just sick of everything.  I desperately- we desperately need the Lord to let us know he is with us today.  I dont know or care how he shows us that- I just know we need to be reminded of that in an undeniable way.  Pray for that. Pray for Ridge.  Pray that God would be glorified- I don't even know what that means in this situation, but I know that is the main objective in all things.  I believe that.  Of course, what I want the most is for Ridge to be all better.  So of course, that is what I beg you to pray.  But I know that even that is not the most important part of this situation.  So all I can ask is that you pray- for whatever you feel led to pray.  I don't even know what else to write, so  I will stop.

Tuesday, November 3, 2009

longest words ever...or so it seems

multifocal lymphangioendotheliomatosis with thrombocytopenia.  pneumatosis intestinalis.

little baby cary.

hmmmm...why do these stupid long words "define" my sweet little boy?  i know, they aren't his true definition.  but i am just so sick of this.  so sick of the fact i'm adjusted to MLT and he's supposed to be able to live with it and then we hit this stupid hole in the road and things just won't get better.  so so sick of the stupid new thing-- second set of long words up there-- that you should not google bc i am a google NERD and found out all kinds of horrible things i don't want to know.  just don't google it- i will save you the time and just tell you lots of kids who end up with that pneumaCRAPOLA don't live.  i had a long discussion with our resident, who we really have enjoyed, who is changing service tomorrow, anyway, we had a long talk tonight and he helped explain it to me and showed me ridge's x ray and told me he looks like he is doing so much BETTER now than he was two months ago when this looked like it was on the xray (but no one saw it two months ago)....anyway, they are "worried" but not NEAR as worried as they would normally be about this "diagnosis"....ridge does not have really any of the symptoms of this, other than blood in his stool, which could be from his MLT.  confusing, huh? AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGHHHHHHHHHHHHHHHHHHHHHHHHHHH!  yes. confusing.

so i'm supposed to not worry.  i was SUPPOSED to not worry anyway, right?  that's what we are all SUPPOSED to do.  so i will sure try to put this at the back of my mind- not forget about it, just put it back there in case i need it later.   but i will hope and pray that this is really a case to "not" worry TOO much about...because that just seems sick and wrong for something ELSE to do something WORTH worrying about to my kid.

so what is it?  well, we all have bacteria in our intestines...ridge's bacteria has also migrated outside of his intestines. bacteria cause gas.  we don't want too much gas to build up outside the intestine wall bc if air gets in there the bowel can rupture.  this is not good.  that bacteria better get back where it goes, bc if i could go in there and move it i would.  i hate this. HATE IT HATE IT HATE IT.  hate it.  it is time for it to stop.

what is THAT?

so...dark poop is back.  red spitup was here today too.  and apparently we have some other weird guest joining ridge's colon that we are unsure how to treat so we are going to have to NOT feed him today.  great.  perhaps antibiotics tomorrow for whatever bacteria is growing in the colon...for sure more x rays tomorrow (had some yesterday).  yuck.  ridge is puny and just sleeping today.  so ready to be done with this.

Sunday, November 1, 2009

update again!

Ridge got a new central line. It was odd...we were the ONLY ones in the holding room and recovery room bc...well...it's Sunday.  Normally, there are a ton of kids down there recovering.  Today, we were the ONLY ones...special little ridge.  So, we have a new working broviac and an IV in his foot.  He will be getting blood shortly.  I think that's about all of the updates.  Thanks to our wonderful nurse Tera today who has been moving moving ALL day thanks to us and will probably be so super tired tonight she won't get to do anything fun.  Or even WANT to!  Between Tera and some other regulars of ours- Rebecca and Laura-- we had a LOT of good care today.  Not that we don't usually.  In case I haven't said it enough, we have wonderful nurses and while I will be ECSTATIC when we get to leave, they have become friends and practically family and I will miss them.  Really.  We looooove our nurses!  I can be assertive when I need to, but it is also good to know that while I am advocating for Ridge, these nurses are most always advocating for him just as faithfully!  You girls are GREAT!

really?

soo.....a few days ago we realized ridge's central line was messing up- separating.  the surgeon came in and said we should just watch it but no reason to fix it until it was completely broken.  mmmm....well....i knew...i KNEW...completely broken was soon on the horizon...but still, no one would fix it.  remember...ridge only has this ONE line now.  so, sure enough...today, as i picked ridge up, his line split in two.  half still in his body, the other half on the floor.  we got it clamped so he didn't bleed out....and numerous attempts at an IV have been made.  unsuccessfully.  not because our nurseS haven't tried....ridge is just small and fat and has hard to find veins.  so now, he's been going 2 hours on zero medications.  i'm not writing that using  a happy tone.  i'm so annoyed.  he needs the IV for meds. he also needs an IV for blood bc he was already probably receiving blood today sometime anyway.  so...now we need an IV for TWO things.  great.  and we can't get one for ONE thing.  The last time they CUT the octreotide it was within hours that he began having a negative reaction.  Now...we are not on a CUT amt. of octreotide. we are on ZERO.  and just sitting here waiting. YES, our wonderful nurse is trying to get everything lined up to get him a line in...but until everyone she is having to call decides to call her back, we are waiting.  and getting irritated.  i KNOW God knew this was going to happen, i KNOW He is taking care of us all, but i am still as mad as mad can be that i called it earlier this week and NOTHING was done.  How do I get people to believe me that i actually KNOW what is going on with my child?  If we would've fixed this EARLIER IN THE WEEK, we wouldn't be sitting here on SUNDAY when it is hard to get crap like this done!  SERIOUSLY!?!??!  this is a big deal to me bc this is MY child.  please, surgeon...please, doctor...my prayer is that you could feel, maybe you do, for one second the urgency this is taking in my life right now.  maybe i will begin praying that i could feel for one second how you feel about the situation. because it would be nice to know that i am overreacting.  or it would be nice to know for a fact that this doesn't phase you like it phases me bc it just isn't your child.  either way, it would be nice to know.

so please pray for baby ridge.  pray that his counts would stay somewhat stable in the absence of his medicine but in the presence of God.....and pray that a vein could be located for an IV.  pray that there would be some way we could get the blood AND the meds going.  and pray that as loudly as my voice has been heard up to this point, it would be heard even more CLEARLY from here on out.
There was an error in this gadget