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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, September 27, 2009

be near

I've loved this song since I heard it probably 8 years ago or whenever it was written....for some reason it's all I can think of tonight. So i'm posting the lyrics and adding it to my playlist. Nothing has changed really...Ridge had a large amt. of brown spit up tonight and the cross cover/on call resident wanted some of it sent to the lab. we couldn't get it off the burp cloth, but it's so ridiculous- it's blood. we know it. the nurses know it. but b/c it is a resident who doesn't know us (no offense to all of our friends who are in the medical profession...but as a parent it is annoying)...anyway, b/c it's someone who doesn't know us and who isn't familiar with Ridge's disease...UGH, they want it tested. so basically, we just wait b/c they wouldn't do anything with it anyway even if it was tested and came back as blood...what really could be done anyway? So, it doesn't matter, either way. We'll just tell the dr. tomorrow I guess. ANYWAY, find this song in our playlist and give it a listen if you haven't heard it before. This is what I need- I need to be reminded that God IS near in this. I know in my head that He is here. I just need to feel it- I know our faith is not dependent on our feelings, but I need to feel it. That's what I NEED. Thanks for the prayers-- I hope that wherever you are, and whatever you are needing tonight, perhaps these lyrics and/or this song can minister to you.

You are all,
big and small
beautifulohhh
And wonderful to trust in grace through faith
But I'm asking to taste~

For dark is light to you
Depths are height to you
Far is near,
but Lord I need to hear from you

Be near, oh God, Be near, oh God of us
Your nearness is to us our good
Be near, oh God, Be near, oh God of us
Your nearness is to us our good
Our good

Your fullness is mine (Your fullness is mine)
Revelation divine (Revelation divine)
But oh to taste,
to know much more than a page
To feel your embrace...

For dark is light to you
Depths are height to you
Far is near
but Lord, I need to hear from you

Be near oh God Be near oh God of us
You're nearness is to us our good
Be near oh God Be near oh God of us
You're nearness is to us our good

Be near oh God Be near oh God of us
You're nearness is to us our good
Be near oh God Be near oh God of us
You're nearness is to us our good
My good



Okay, so after posting this, I was trying to read a little of the Bible. It's hard to know where/what to read right now in the hospital. I have to go with time-wise stuff, so I've been sticking to the psalms a lot. Tonight was the 27th, so I turned to Psalm 27. I gotta share it. Forgive the lengthy post. Most of the emphasis in this is my own, so if things are all caps or italicized or whatever, I am inserting that of my own volition.

Psalm 27

The Lord is my light and my salvation; whom shall I fear? The Lord is the defense of my life; whom shall I dread? When evildoers came upon me to devour my flesh, my adversaries and my enemies, they stumbled and fell. Though a host encamp against me, my heart will NOT fear; though war arise against me, in spite of this, I SHALL be confident. One thing I have asked from the Lord, THAT I shall seek: that I may dwell in the house of the Lord all the days of my life, to behold the beauty of the Lord and to meditate in His temple. For in the day of trouble, He WILL conceal me in His tabernacle; in the secret place of His tent He WILL hide me; He WILL lift me up on a rock. And now my head will be lifted up above my enemies around me, and I will offer in His tent sacrifices with shouts of JOY; I will sing, YES, I WILL sing praises to the Lord. Hear, O Lord, when I cry with my voice, and be gracious to me and answer me. When You said, "Seek My face," my heart said to you, "Your face, O Lord, I shall seek." Do not hide Your face from me, do not turn Your servant away in anger; YOU have been my help; do not abandon me nor forsake me, O God of my salvation! For my father and my mother have forsaken me, but the Lord will take me up. Teach me Your way, O Lord, and lead me in a level path because of my foes. Do not deliver me over to the desire of my adversaries, for false witnesses have risen against me, and such as breathe out violence. I WOULD HAVE DESPAIRED unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; YES, wait for the Lord.

mmmmm...good stuff.

Saturday, September 26, 2009

lazy day saturday

Here's the scoop-
Ridge is spitting up some brownish stuff and occaisionally redish/pink....he also frequently spits up just regular spit up/milk/etc....
They are going to reduce one of his meds, but not the steroid since he is spitting up blood products. He is getting a reduction on the med that is supposed to be permanent- his octreotide. We will see how that goes...the reduction begins tomorrow.
He's taking a form of prevacid that is supposed to dissolve in water...but it isn't so good at dissolving.
His blood pressures are still running high, so we may be introducing a secondary BP med but aren't sure yet....
He has been pretty happy. He is not eating a ton in the way of milk anyway, but he loves his baby food.
I guess boring is good; we don't have a lot to report. I can only speak for myself, but I am getting weary of this whole process. I want to be done with it. I know it isn't my timing, but I'm just done done done with it it feels like. I need a second wind, or a third wind, or something. It just gets so frustrating. One day at a time.......right? :) We are about to take the boys outside the hospital for a little fresh air and Vit. D!

Hope your Saturday is/was great!

Thursday, September 24, 2009

doing well

Ridge had stable counts again today and the platelets are going back up- significantly. There is talk of reducing the steroid again, but the doc is waiting to see just where the platelets stabilize. i had to spell stabilize about four times before i figured out the right way- and i am good at spelling! sheesh. Anyway, his blood pressures are still high so they are going to try another med along with his OTHER bp med to see if that helps. the bps are high b/c of the steroids.

his poop's still looking the way it should.

he is spitting up some brown, and that is annoying but they are fiddling with some meds to try to get that back under control. we shall see what happens.

he has been SO SO happy all day. he actually has put himself to sleep in his bed twice today- amazing b/c he never does that. he's been napping over an hour this time.


so things are stable...same ol' same ol. keep praying. I know God is working in Ridge. I know he is going to do a great thing through this. I am ready for that to come to fruition. Pray that we would receive a reminder of God's hand on us- I know that sounds ridiculous since it is obvious that God is taking care of us. But I am being honest here, and we need a refreshing reminder of that, even though we "know" it. Pray we would be well-- avoiding the flu, the swine flu, rsv, all the diseases that are hitting early this year...ugh/ick/yuck/etc....

that's about all the news. praying daily that not only would God keep healing Ridge but that He would bring the four of us back together again. We love Sawyer and we love each other, but getting away to have "family" time just isn't the same with only three of us- even if that is how it was for almost 3 years. It isn't family time unless the four of us are together. It just isn't, and it can't be. So I am ready for the day when we can all hang out together, even if that means staying at home and snuggling on the couch watching Teenage Mutant Ninja Turtles. At home, with just my 3 boys, snuggled up on the couch, watching a movie or tv...nowhere else i'd rather be, not in this whole big ol' world.

Tuesday, September 22, 2009

nada...

Not a lot to report but I know some of you read this daily, so I am trying not to disappoint too much.

Ridge is stylin' today in his "Lock up your daughters" tshirt from baby gap....I will try to post pics if I remember to take them.

Today is pic day for Sawyer @ school...we shall see how those turn out, b/c he repeatedly told me he was NOT smiling for those pictures. I told him to just make a face instead then. Since I didn't get a pic of the face he said he would make, I will use an emoticon....he sorta made this face :o

Anyway....Ridge's counts are still stable. His platelets were at 59K and jumped to 70K, which was exciting to me....and you, I am sure.

He is still enjoying rice cereal and green beans and that makes deciphering the poop color very difficult. I think it's still good though....

He is layin on his tummy jamming out to some tunes w/ me while I type this blog. He's such a good baby.

Hope you have a good day. Wherever life finds you today, remember to take today in stride- do not compare it to your yesterday or your possible tomorrow. Today is what we have, and it doesn't matter how good or bad our yesterday was or our tomorrow looks...today is what we've got. so take it for what it is, and seize it!

Saturday, September 19, 2009

food baby....

i apologize for having no photos on me- cameras not with me right now.  but we really don't have too good of pics of it anyway.  so ridge had the rice cereal the other day- i have a photo posted here somewhere.  he loved it, ate it like a pro.  i asked today about baby food.  originally, before all of this, i was not going to give him baby food at all till around 6 months, and then i was going to mash it myself.  but...things are different, so i must adjust.  so i was ready for him to get to try some other things; so today we got the okay to try baby food.  so...we tried green beans- which is the best thing to start w/, i think.  he LOVED them. ate them twice today and rice cereal twice today.  last night, brandon gave him a bottle at 6:40 bc i was gone with sawyer to the movies (cloudy w/ a chance of meatballs- take your kids to see it)...anyway, i wasn't there to feed ridge, so brandon gives him the bottle.  i get back around 8 thinking ridge will need to eat around 9 or so.  ridge is asleep when i arrive, and he doesn't wake up to eat until...drumroll please....2:30 this morning!  wooooooo HOOOOOO!!!!!  then he makes it another five hours before eating again!  and he didn't eat as often during the day but only b/c he wasn't hungry!  he's doing so good w/ the food stuff.  

his counts were decent today- he got blood the other day and his hemoglobin was actually up from that count, as was his hematocrit.  platelets are still dropping, which is totally normal w/ the disease....still annoying, but normal.  we think the platelets were possibly high b/c he was on a high dose of IV steroids.  now he is on a moderately high dose of oral steroids.  but everything else was good (blood counts)....so it's fine.  

i'm home w/ sawyer tonight, church is tomorrow.  being here w/o ridge is always sad but hadn't really bugged me until the last time i was here- it's really hard to look in his room that we worked so hard on...knowing he should be sleeping in there, playing in there, talking/cooing/laughing in there....but he's growing up somewhere else.  again, i know we are where we need to be. i know God is taking care of us.  Sawyer loves the song "Mighty to Save" and asked me to play it for him tonight...so it is blaring out of the computer when i walk into ridge's room.  all i could do in that moment was just fall to my knees and again beg for God to heal him....as I will continue to do, daily.  we know we will have good days and bad, but our faith will not falter....it will not always be perfect, but it will always be THERE.  We will always trust in our God...b/c....Savior, He can move the mountains...My God is Mighty to Save, He is Mighty to Save....Forever, Author of Salvation, He rose and conquered the Grave, Jesus conquered the Grave...

peace out.

the carys

Friday, September 18, 2009

quick update- longer blog below!

Quickly, just wanted to let everyone know Ridge had to get blood last night; his hemoglobin was down to 7.9, which is below 8 (duh), so he got some blood. His levels are really high today- 12.7 is his hemoglobin. He hadn't had blood in ALMOST four weeks, so it was totally fine, and sort of expected, I guess. A few issues: His platelets. They are SUPPOSED to be low...but we have been pleasantly surprised that they have been really high (like 200K, 300K...). They are down to 89K, which is not terrible...but they keep dropping. Again, this is normal/expected w/ the disease, but....ugh. So pray that things turn back around. I don't like it at all. He is still acting fine, eating well, and the poop is still normal! :) So the platelets are one issue. Another issue...when they drew his blood this morning and sent it to the lab, the lab called back to say the blood was too clotted to test. This happened one time the other day, and his line was clotted off so we had to clear it out. Today, though, his line seems to be working fine. So anyway, the nurse came back and re-drew his blood....by the time she got to the doorway, she said something like, "look at it--" and it was already clotted. So she re-drew again and it was fine. But I don't like that it's clotting like that, it's just...strange. So pray that whatever is making THAT happen, stops. His line, again, is seeming to work fine, so we are kind of confounded about the clotting issue.

Have a great day, and a great weekend. Thanks for all the prayers! Be sure to read the blog below this if you haven't- I wrote it yesterday and then I wrote a new one today, but I didn't want you to miss yesterday's!

Thursday, September 17, 2009

i'm a wreck of sorts

let's preface by saying, NOT a wreck b/c of anything bad.  ridge's counts were a little down today but nothing major, and they will do another check later to see what his counts are this evening.  i'm a wreck b/c of this....i came home for awhile today and i picked up sawyer and we went to get flu shots.  when that was done, i had a few errands to run.

one of those stops was target.  at target, i always run into one of my students from last year who works there.  i saw him today and he asked how ridge was doing, and he said, "well everyone is thinking about you guys."  such a simple statement, and so many people have said it, but for some reason it really got to me today- in a good, but emotional way.  i then took sawyer to jersey mike's for supper.  the young man working the register looked familiar, so i knew he probably went to the HS, but i'd never had him in class.  when i got to the register to pay, he said, "I would've been in your class this year" or something like that.  I asked him his name and we talked for a little bit, but that statement has stuck with me all evening and every time i think of it i tear up.  i can't explain it.  i wasn't mad or upset- it is a good feeling, i think....just an overwhelming feeling of "i wish i could be in my classroom to get to know you, and all of the other students i was supposed to have in class this year."  only i guess i wasn't supposed to have them, b/c i'm on this road, so i guess this year i'm supposed to travel this road.  i don't know, it's confusing.  but i can't stop crying over that guy's statement.  in a good way.  but it gets me every time i think about it.  i think of the 100 or so lives i'm missing out on this year.  i know i know, i'm working with one special life and probably touching 100 or more OTHER lives that i wouldn't normally. i get that.  but my students often become like family to me throughout the year.  and i don't know. i can't type about it anymore b/c i can't type what i feel, it isn't coming out right.  

people are so good to us.  today my pastor stopped to ask a student what this old beat up car was for and he was informed it was for homecoming- a car bash- for wish week.  he asked who the proceeds went to, and the girl said, "the carys"...now we knew about Wish Week, so i don't know why it overwhelmed me to hear that.  but it did.  it is so impossible to write about how loved our community is making us feel (and lots of other people NOT in our community- don't worry, you aren't unnoticed!!! i was just in town today so a flood of emotion rolled over me!)...i am so thankful this is where we've made our home...over and over it is confirmed to me that us being here is just...right.  i couldn't be prouder to be from yukon.  unless God leads us somewhere else, this is where i always want to call home.  i have a sign hanging in my house that says "Home is where your story begins."  well...this is a new story for us, and no matter what, it is going to be so good....and it began here...so this...this is home.  God is using the people all over this community to meet our needs and to lift us up in prayer.  He is so good.  And we are so happy to call ourselves MILLERS!  we love you, yukon!

Wednesday, September 16, 2009

day 50

I think today was day 50. Ridge is still doing SOOOO good- his counts were stable again today, he slept from 8:30-1:50 last night. then from about 2:10 till 6:30! he even napped today, twice! tonight, as soon as Brandon and sawyer headed home, Ridge went right to sleep! he's being such a good boy! he smiled a TON for the doctor today, and chatted it up with our nurse micah and the student nurse w/ her today...he showed off for my friends who came by w/ supper tonight...AND...he got to eat cereal for the first time (for all you non-parents--- not CEREAL...rice cereal...not like lucky charms or anything)....i put the spoon to his mouth and it was like he'd been doing this forever. he ate ALL of what i prepared! such a good boy. i've got some email catch up to do, so i'm signing off tonight. keep the prayers coming-- specifically add that his apnea does not begin b/c they stopped the caffeine to see what happens. we hate those monitors when the apnea acts up! ridge sleeps GREAT but no one else does! and of COURSE keep praying for healing and for strength on our part, as well. hope you had as good a day as ridge!


we got to try cereal tonight! ridge was a pro, like he'd been doing that all along. don't you like the bib his daddy brought him? a student gave it to us-- but it was so ridiculous putting that particular bib on the fattest baby around! :) he liked his cereal!
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he's a rockstar...
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Tuesday, September 15, 2009

still not much change...but change isn't ALWAYS good, right? :)

Ridge had another "normal" day. his counts are still stable. i don't have a ton to report. we are so thankful that God is watching over him and giving him such a long bout of good days...no blood for over 3 weeks now! today was day 49 of being in the hospital....49! gosh that's a long time it seems! Ridge has been doing well w/ his meds, except the prilosec so it was changed to zantac. we shall see how that goes! the last 3 nights as soon as all company has exited, ridge has fallen asleep w/in about 10 minutes and stayed down for several hours before getting hungry. it is wonderful getting to rest/read/blog/sleep and have some "sanity" for a few hours in a row. his constant med- octreotide- was changed back to a faster speed, so he is using a bigger pump now which will make it nearly impossible to use the wagon w/ him outside...bummer. but we should still be able to carry him on walks and push the pump at the same time. SHORT walks, b/c that kid is HEAVY!

thank you so much for the prayers. this event is all we have time for our life to revolve around right now- the disease, God's plan and healing and power, how the disease affects our marriage to each other and our parenting w/ sawyer, every decision is centered on this disease. keep the prayers coming- pray for healing and wisdom, and also, pray for illness to avoid us this flu season. brandon's had his flu shot. sawyer arnd i get ours on thursday. ridge is too young to get one, so we are hoping that most of his visitors that are old enough to have one and are able to get one do get one, b/c we can not risk him becoming infected on top of all this mess. so pray for our health. on that note, i did hear dr. oz say that while it is uncertain if the h1n1 vaccine will be any good @ all, one surefire way to avoid it (and i have no idea, i'm just repeating this) is 1000 units of vitamin D a day. so...there you go. there's some info for you. i already get that in my calcium pill, so i hope i'm good there.

hope you sleep well tonight...here i go to sleep myself.

love to ya.
the carys

Monday, September 14, 2009

bon voyage!

No, we aren't leaving. But two of our favorite nurses just went on vacation. So here's a shout out to the twins- have a great cruise. We hope to go home, but we won't be too sad if we are still here when you are back!

Today, we have another of our favorite nurses. I was worried b/c this weekend, Tina and Tera (the twins) both worked, as did Laura, another favorite of ours...so I was worried about who the heck would be taking care of Ridge this week during the day! When Tina broke the news of their cruise to us, I was pretty down about it! But she and Tera got to work and figured out a good week for us- so thanks, ladies! So here we are with Micah today and Wednesday. Laura is back Friday. We get to try a new nurse out Tues. and Thursday, but she comes highly recommended by everyone! I am not sure on our night nurses this week- two of our faves are in tonight, so we'll see who we get. Everyone is good- day and night- that we've had anyway...but it's hard when you get a new face! I just try to remember that means we have one more "good" nurse to add to our list of regulars. I really feel like this is becoming a second family to us.

I stayed here alone last night, and I can honestly say it was great. Ridge did well, I slept well, and I felt more like I was "normal"....all the help, again, is wonderful, it just isn't "real life"-- at home it wouldn't be like that. So it was nice to have some "normalcy" in this hospital room. Ridge won't nap today so he's sitting in my lap in the floor as I type this (don't worry- it's clean, we're on a blanket, but I also swept and mopped w/ my swiffer! yes, housekeeping cleans, but if you know me, you know i'm a freak about that stuff).

Ridge gets his bath today and his dressings changed. We are still waiting to see the docs, so....I don' thave a big update.

His counts were stable still, so no blood- today is 3 weeks!

The poop is still yellow to green- both good.

Ridge is very puffy from the steroids. Those were changed to oral, but not less dosage, so we will see how things go there.

The little man is grunting so I better sign off- hope today finds you well. This week could bring some medicine changes for Ridge, it will bring flu shots for sawyer and i most likely, and i think this week looks Cloudy...with a chance of meatballs (I will be taking saw man on a date to see that this friday....i loved the book growing up and i read it to sawyer the other day @ the library and he also liked it...so, it's a date. )

love to ya-

Saturday, September 12, 2009

one more post

listen to this link....we've said some of the exact same words in this process.  we know what these parents felt, and i know they would know our heart's cry.  this is what we are believing for Ridge as well-- watch this, and be moved/amazed/changed
http://www.tangle.com/view_video?viewkey=a5e697fe65e6e7bffa75

why's my dryer so loud?/a day in the life/worries and comforts

This title is three fold b/c I needed to write it down so I remembered everything I want to talk about. I'm home alone for a little while. I came home this morning and have been here about four hours...i took a short nap and have done some laundry...which brings me to:
WHY IS MY DRYER SO LOUD?
answer...because I am the proud owner of a three year old boy.  ROCKS ROCKS ROCKS...everywhere.  I was trying to nap in the back of the house and I could not figure out why I could hear the dryer all the way back there....well...upon my waking, I discovered a big heavy rock in the dryer.  Sawyer is addicted to putting things in his pocket, and I'd say 90% of the time, there's a rock in his pocket.  His teacher calls him a pocket packer.  Definitely.  Every day, rocks, toys, kleenex, wood chips from the playground...just STUFF!  the kid is a hoarder.

He is also hilarious. the other day he was singing some song "What is today? What is tomorrow? I have a dairy-o, what is today? Cinco de mayo.  poop streaks in my pants."  yes, that's what he said, people.  seriously.  he also has more than once asked brandon on the elevator at the hospital, "is that a boy or a girl?"...asking OUT LOUD about another traveler on the elevator...brandon assures me BOTH times it was obvious the gender of the person.  So that's just....rude.  I get curiousity....it's fine to be curious. sometimes it's embarassing to his parents....but that is not curiousity- that's just rudeness if it's OBVIOUSLY a man !  or a woman!  The other day, apparently, he was in the waiting room and (I preface this story by meaning ZERO disrespect.  I am sharing it to share our AAAAAAA! moments with this child...so please know, I am relaying the story EXACTLY how i presume it happened, and I apologize if I use a term/terms that are not "politically correct"- I assure you, it is only b/c I don't know the right term if I use a wrong one.)-- ANYWAY, he's in the waiting room and a little person walks by.  I am thinking, as I am told this story, that I know what family this person is from b/c I know of another family there and I know their story, and I was sad to hear that they are possibly STILL having to be at the hospital.  ANYWAY- Sawyer sees this person and says, "hey- are you big or little?"  yes, people.  he asks that out loud.  and I guess he asked it in an honest fashion and I guess maybe it isn't offensive but I just don't know, so it was still embarassing- and I wasn't even out there!  So, I am apologizing for him today.  Although, I suppose it might've been a confusing situation for him, i don't know?

A DAY IN THE LIFE....

I thought some of you might not know exactly how our days go, so I thought maybe it would be interesting for you to see a "typical" schedule of our "new" life.

6:30ish- ridge is ready to eat.  he's fussy and usually needs a diaper change.  all this is done, and if brandon has stayed at the hospital the night before, he is usually heading out the door to work. I'm usually there.  If I happened to be home the night before, Brandon waits on me to get there (I come as soon as I drop sawyer off @ school).  Ridge usually wakes up at this time b/c this is when his steroids are administered and he usually wakes up after receiving them  (IV)
7 ish- Ridge is usually back to sleep, but 7:30ish is when the resident makes her rounds, so usually he gets a short nap b/c for some reason, her voice always wakes him up- and it isn't that she is loud, bc she isn't.  So this is usually when our day begins.  Brandon is at work by this time, and Sawyer is at school.  So...it's the kid and i, and usually one of the grandmas.
7ish-9ish...hanging out, maybe snoozing a little.  usually ridge is playing in bed or someone else is holding him because I'm trying to get ready.  he usually eats again around 8 or 8:30
9ish- med time....Ridge takes 3 oral meds at this time and soon he'll take 4 if we get the steroids switched to oral from IV.  Ridge hates his prilosec so sometimes giving the meds is a challenge.  he does great if brandon gives them. i like giving them, but he doesn't do as well for me.
9ish-11ish- Ridge will eat again between 9:30 and 10:00.  The doctor will come in sometime before 11 USUALLY. sometimes it is later.  We will hear at this time if there are any changes in what they plan to do for the day/week/long term/etc.
11ish- after the doctor has been in, if Ridge is having a good day as far as poop color/blood counts/etc, we might go out for awhile- either loading ridge up in his wagon, or just carrying him around.  his constant IV meds are on a pump that is portable, so we have a little freedom to get out of our room, IF i think he's doing well enough.
noonish- ridge will stay w/ someone and one person will go eat lunch, then we will trade off.  if i'm alone, which i don't think has happened at lunch yet, but IF i am alone @ lunch, we ALWAYS have great nurses who will watch him.  the other day I had to clean a room downstairs that we'd had for a couple nights, and vanessa, our nurse, just held ridge and took care of him (he did spit up all down her back...but...still, we really appreciate her holding him!) another girl at the desk also helped take care of him while i did this.  the nurses/techs/etc. are all so great and they all love ridge!
*note- throughout the day, ridge has vital signs checked, but idk what time, it's usually every 2 hrs or so.
after lunch- we will spend the day playing/walking around/talking to ridge/possibly resting but i doubt it/changing diapers/having his picc line (in his arm) flushed/maybe giving him a bath/mondays he gets his dressings changed on his lines..../ridge will eat around noon, 2, and 4, most likely, but sometimes a little sooner than those times.
4:00ish- he used to get bloodwork done at this time, but that draw has been dropped for now since he's stayed stable awhile.
5:15ish- Brandon and Sawyer arrive for part of the evening, and sometime between this time and 6:30 we usually go downstairs to eat supper, or someone brings it up, or sometimes we're lucky and someone brings us supper from outside of the hospital! Ridge will eat sometime between 5:30 and 6 possibly
6:30 pm- ridge gets another dose of steroids in his IV (keep in mind if you didn't catch above- he is constantly on IV meds, OCTREOTIDE is the name of the drug he is on consistently).  from 5:30 on, we are trying to spend time with both boys. around 7:00 or 7:30, Brandon will usually leave with Sawyer, take him home, give him his bath, and put him to bed around 8:30.  I'm not sure what Brandon does after 8:30, but I figure he goes to bed pretty early....maybe i'm wrong, I don't know b/c I am never there. Sometimes he is not there- sometimes Sawyer stays with us, or someone else stays with him and Brandon stays with me.  Occaisionally, I take sawyer home on a school night.  
7ish- ridge might eat again.  
7:30ish-9 pm- sometime in here i usually get my shower.  at 9 pm, ridge takes his meds again.  he might eat again around 8:30ish or 9:30 ish depending on if he falls asleep after the 7ish feeding.  
9 pm- ridge is hopefully asleep.  he will be weighed before he eats again in the night.  he will have his vitals checked around every 2 hours, and sometimes he sleeps through this.  othertimes, he wakes up and we have to feed him again b/c that usually stops his fussing.
so from 9pm-4 am, no telling what's going on, but often, it's not a lot of sleeping.  i wake up about every hour, whether ridge is having a good night or not.  i just can't sleep well anymore.
4 am- ridge has his CBC (bloodwork) drawn.  sometimes he sleeps through this, other times he has to eat afterwards bc he wakes up.
6:30 am- steroids are given, and our day starts again.

i know it isn't exciting, but i thought i'd let you know how it sorta goes.

WORRIES and COMFORTS:
worries:  i'm tired. i'm tired of having to do this, and i know some of you wonder how we keep our faith and our spirits up and know, it isn't always like that and it certainly isn't easy.  we do KNOW that God is in control, but we do falter.  i don't guess i ever wonder "WHY ME?" or have a pity party, but I am kind of in a place where I am ready for God to just say, ENOUGH.  BE STILL.  IT'S OVER.  I know, He probably isn't ready to say that.  But I'm ready to hear it.  I am home today and I see things all around me and I just think things like, "my kids are supposed to be here.  they are supposed to be playing and laughing and our family is supposed to be lazy-ing around on this saturday.  together. all four of us. in this house. on this couch. watching this tv. making brownies in this kitchen. growing up together. loving on each other. here. HERE."  it's so frustrating.  i'm being real with you, so i hope you seeing my faith in it's reality isn't too disheartening. i know a lot of you read the blog and comment on how strong we are- but we are just normal people.  i am normal. i am tired of it. i am ready for it to all end. but i want it to end MY way.  i want GOD'S way to be MY way. I want it to happen now and in the way I anticipate it happening.  I know some of you will tell me to let go, some of you might think I just need to trust God- that's okay.  I want you to know that just because i WANT it to be my way, i still KNOW that it will happen in God's timing and in his way.  I still have laid my baby in his arms and am trusting in his will.  I still am human, though.  I am not "taking" my baby back- I don't know what to do with him if i take him back- he is fully God's.  And so am I- so are we.  But I am having a human moment and a human day and i just want God to FIX IT.  When Ridge is doing badly, and when he's doing well, i still want it to just BE OVER.  With a GOOD ending.  With what I HUMANLY perceive as a GOOD ending.  I know you all relate- especially you parents- to what I am talking about.  God is good, and he is faithful, and I know he is watching over us, and I don't doubt him or his strength or his ability.  But I am not perfect and I do falter and while I praise God for what he is doing and will do, I still want to know why it's not over.  I am READY to see God act, and I am READY for him to receive glory, and i am READY to give him all credit and praise. I am READY to be done.  I sometimes wonder how I can go on.  I know I can. But i still wonder.

So those are some worries.  Here is some comfort.  Forgive the long passage.  I haven't had a ton of time to read the Bible lately, I'll be honest.  praying w/o ceasing, yes.  sitting down to comprehend God's word is not always easy with a baby on your lap or a baby crying.  no excuses, i'm still the one who hasn't made the time.  but today i had some time and i took it and here is what i read.  it's lengthy, so skip it if you don't want to read it, but i'm typing it anyway.

Isaiah 45-- most emphasis, I've added myself, other than LORD...This is written about Cyrus, whom God had chosen to rebuild Jerusalem...God speaks of overcoming the things in the way, and of bringing people to Him through the rebuilding and overcoming of those obstacles.

This is what the LORD says to his anointed, to Cyrus, whose right hand I take hold of to subdue nations before him and to strip kings of their armor, to open doors before him so that gates will not be shut:  I will go before you and will LEVEL THE MOUNTAINS; I will BREAK DOWN GATES OF BRONZE AND CUT THROUGH BARS OF IRON.  I will give you the treasures of darkness, riches stored in secret places, so that you may KNOW that I am the LORD, the God of Israel, who summons you BY NAME.  For the sake of Jacob my servant, of Israel my chosen, I summon you BY NAME and bestow on you a TITLE OF HONOR, though you do not acknowledge me.  I am the LORD, and there is no other; apart from me there is no God.  I WILL strengthen you, though you have not acknowledged me, so that from the rising of the sun to the place of its setting men may know there is NONE besides me.  I am the LORD and there is no other.  I form the light and create the darkness, I bring prosperity and create disaster; I , the LORD, do all these things.  You heavens above, rain down righteousness.  Let the clouds shower it down.  Let the earth open wide, let salvation spring up, let righteousness grow with it; I the LORD have created it.  Woe to him who quarrels with his Maker, to him who is but a potsherd among the potsherds on the ground.  Does the clay say to the potter, "what are you making?" Does your work say, "He has no hands?" Woe to him who says to his father, "What have you begotten?" or to his mother, "what have you brought to birth?" This is what the LORD says- the Holy One of Israel, and its Maker:  Concerning things to come, do you question me about my children, or give me orders about the work of my hands? It is I who made the earth and created mankind upon it.  My own hands stretched out the heavens; I marshaled their starry hosts.  I will raise up Cyrus in my righteousness: I will make all his ways straight.  He will rebuild my city and set my exiles free, but not for a price or reward, says the LORD Almighty.  This is what the Lord says:  The products of Egypt and the merchandise of Cush, and those tall Sabeans- they will come over to you and will be yours; they will trudge behind you, coming over to you in chains.  They will BOW DOWN BEFORE YOU and plead with you, saying, "surely God is with you and THERE IS NO OTHER; THERE IS NO OTHER god." Truly you are a God who hides himself, O God and Savior of Israel.  All the makers of idols will be put to shame and disgraced; they will go off into disgrace together.  but Israel will be saved by the LORD with an everlasting salvation; you will never be put to shame or disgraced, to ages everlasting.  For this is what the LORD says- he who created the heavens, he is God; he who fashioned and made the earth, he founded it; he did not create it to be empty, but formed it to be inhabited- he says: I am the LORD and there is no other.  I have not spoken in secret, from somewhere in a land of darkness; I have not said to Jacob's descendants, "seek me in vain." I the LORD speak the truth; I declare what is right.  Gather together and come; assemble, you fugitives from the nations.  Ignorant are those who carry about idols of wood, who pray to gods that CANNOT SAVE.  Declare what is to be, present it- let them take counsel together.  Who foretold this long ago, who declared it from the distant past?  Was it not I, the LORD? And there is no God apart from me; a righteous God and a Savior; there is none but me.  Turn t me and be saved, all you ends of the earth; for I am God, and there is no other.  By myself I have sworn, my mouth has uttered in all integrity a word that WILL NOT BE REVOKED:  Before me, ever knee will bow; by me every tongue will swear.  They will say of me, "In the LORD alone are righteousness and strength."  All who have raged against him will come to him and be put to shame.  But in the LORD all the descendants of Israel will be found righteous and will exult.

God already knows what he is going to do.  I trust that.  I know it might not be what I want it to be...I hope it is, but I know it might not be.  Either way, it is good.  

Have a blessed day.

Thursday, September 10, 2009

I have to start thinking of good titles....

So...Ridge's counts were back down a bit today....Sunday he had a hemoglobin level of 8.7 and then Monday it jumped to 10.1...Tuesday it was down to 9.4 or so, and then Wed. it was back up to 10.1....today, back down to 8.6. Normally, this would not be bad news...so I guess it still isn't really bad news. We just liked that 10.1! Ridge is super puffy from the steroids, even though he isn't on as high a dose as he was three weeks ago... Today he has been sort of out of sorts-- not really fussy at all but not happy-- just kind of lethargic....he has let someone hold him in the rocking chair most of the day- and maybe that's normal for most babies...but not for Ridge. Ridge is a stand up baby-- he wants you to be standing when you hold him. Otherwise, he is usually screaming. He also hasn't been very talkative or "smiley" today, and this is out of sorts for him, also. So...I have been watching him fairly closely, but haven't noticed any scary changes in him (yep, we still have pretty yellow poop)....his heart rate has stayed normal and his breathing has stayed pretty normal, also....so there aren't really any signs of an active bleed coming; it is just disturbing how he's acting. Not many people would probably notice- but I do...b/c I'm his mom (in case you didn't know that).

No other news really that I can think of. Still praying, praying. I've told God several times lately that I'm just ready for it to be over with. I feel like such a wimp saying that b/c it's not like we've been dealing with this for months and months and years and years. So I suppose we can endure more...we just don't want to.

Because of lack of update, and to preserve your time, I will post some more pics instead of just writing, writing, writing!

Have a good one-
the carys

go pokes!
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outside in our wagon! we got some roaming privileges this week!
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with nanny
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tummy time....
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mommy singing to ridge...and ridge thought it was funny.....of course, it is funny if you consider how ridiculous i look if i'm really SINGING!
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Tuesday, September 8, 2009

No change really

Ridge might get one of his oral meds reduced, and he might start taking steroids orally instead of intravenously...and he is going to start getting weighed every other day instead of every day, I think....(he weighs over 17 lbs....yeah)....that's about all the changes.

he doesn't want to sleep....sometimes. it's annoying...sometimes. :)

gotta go take care of him, but i'm gonna throw this out there-- I'm looking for some type of secondary job that I can do from the hospital- not that requires recruiting or anything like that, I'm looking to just write or proofread for people. Things that can be done pretty much via email....not a ton of face to facing b/c I don't have time for that w/ a sick kiddo in the hospital. My blog is about the only verification I have of any writing potential, but I have done some proofreading for some people in the past, and they could say better than I can, but I think I'm pretty good at it. I have a strong English background and am certified to teach English, so I have some decent skills there. So if you know anyone who needs anything like that- proofreading, or some little article/editorial/snippit written-- anywhere in the nation, b/c if it's via email that would be easy....anywhere in the world, I guess-- give them my contact email: a_b_cary@yahoo.com

Not to market myself there...but well, that's exactly what I did. We trust the Lord will take care of us in all things here-- I am just exploring some possibilites for a little supplemental income to help out! Plus, it would give me something to work towards-- it's hard not being @ my job, even though I wouldn't leave Ridge for anything!

Have a blessed day- gotta sign off for now- Ridge is a cranky kiddo right now!
love to ya-
the carys

Monday, September 7, 2009

labor day pt 2

The day out was grand. Lunch at Louie's, napping with Sawyer, and now back to the hospital where we were greeted with the yellowest poop in all the land of yellow poop. As in, Brandon does not ever recall seeing poop so yellow. I do, but I have probably seen more baby poop in general than he has.

Ridge is all pirated out-- I got him some sweet skull and cross bone socks- as in, my size socks- to wear over his line that is in his elbow. He has this elbow guard so he won't grab his line, so we put a sock over it to keep him from scratching his face...so he needed some stylin' socks. Thanks to our favorite store Target, we found some super cool socks...we only bought a set of 3, and only one set is pirate related, but still..that will last him 6 days, whereas for most of us, 3 pairs of socks would only last 3 days. So...good news there.

In other news, whatever is making our allergies go haywire needs to stop....I can not breathe at all, but my nose is running. How does that even make sense? I'm sneezing and coughing and my eyes itch. Sicko. WhateverI'm allergic to, Sawyer isn't, b/c his allergy issues were bad on days when mine weren't, and vice versa.

So keep praying for Ridge. I don't have a reason in the world to believe that the lab made an error- although they have once....and so has the pharmacy....so I guess i DO have a reason in the world to believe it...BUT the other errors were NOT in our favor, and this one IS...so I believe Ridge is really doing better for reals, y'all. :) So keep up the prayers, b/c we all know that is where the power is coming from-- so...get to prayin'! :) Thanks for everything- everyone!


labor day

Well....here's the latest, and I don't have long- we're bustin' outta here for a few hours, THANK GOODNESS. The hospital gets so confining, and sometimes all the help in the world -- while we are forever forever so so so grateful for it-- can be overwhelming and you just need to get a break-- not that I don't get out of the room when other people are here to watch Ridge, I do- I do the laundry or go get lunch or run an errand or blog or whatever...but other than that, I can't even remember the last time I was all alone. Other than being in the bathroom...I just really can't remember. I guess about 6 weeks ago? And that is true for all of us- Brandon, myself, Sawyer, my mom and my mother in law-- and other friends and family too, I'm sure....all of us are just always around someone. So we're going to lunch and our pastor's wife is going to watch Sawyer for a few hours while my mom stays with Ridge, and my mother in law and her mom are also on the way to spend some time with the Ridge-ster. SO it will be nice to get a break, and we feel like we can...because, GET THIS:

Yesterday, Ridge's hemoglobin was 8.7 which is low but not transfusing material. His platelets were 252K which is so weird....b/c it's above normal level...THEN, today, his hemoglobin was 10.1! His platelets were 325K. The platelets are regularly going up, but the hemoglobin was a pleasant shock! Of course, the doctors think it could be a mistake. We sure hope not!

There isn't any other major news b/c stuff is slow here since it's a holiday weekend.

I hope everyone enjoys their day off of work/school/etc...IF you are lucky enough to work somewhere where you get a day off today...those of you who aren't...like our super wonderful nurses- we hope you have a good day anyway!

Sawyer is crying and throwing a fit, Ridge won't go to sleep, everyone's running kind of late so it is a ZOO in here so this blog is probably so crazy and makes probably no sense.

The only other thing I wanted to share is this...we sang this in church yesterday. I know we've sang it a hundred times, but I still wanted to share it:

How great is our God...sing with me, how great is our God, and ALL WILL SEE HOW GREAT, HOW GREAT IS OUR GOD.

Have a great day! I hope it is less insane than this one looks like it's gonna be! Pray for our pastor's wife today- Sawyer is being a MESS!

Love to ya-
the carys


Saturday, September 5, 2009

the latest

So here's the latest news here:

Sawyer and Brandon are dressed identical in OSU gear and we're having a "game day" right here in the hospital.

All four of us (Ridge, Sawyer, myself, Brandon) stayed here @ the hospital last night. It was the first night all 4 of us have been under the same roof in over 5 weeks. It was wonderful. I'm not saying it went off w/o a hitch, but it was wonderful. I think we will try it again tomorrow night as well. Tonight I get the night off and I'm taking Sawyer home, then to church tomorrow, then we'll come back for some more hospital time.

Ridge is still doing well; we have a wagon in our room now and we can unhook Ridge from his monitors, but not his IV, and we have taken him outside some. He can also play on a blanket on the floor. He can't be unhooked for a long time, but for some time. He did have a full skeletal survey Thursday night around 10 pm and we found out the results- he has some spots on the bones in his arms and in his legs. I think they are assuming these are related to the MLT but the doctors do not seem concerned by them. We are waiting, I guess, to find out if they are really MLT related or if we need further bone density scans. It's kind of frustrating that they've found something else. I mean, I'm glad they found it, or whatever, but it's just frustrating that it's there period.

Ridge is waking up, so I better sign off. Hope everyone enjoys their weekend of football (everyone who knows me knows that i haven't watched a second of the sport today...nor will i. but it is on here in our hospital room....and here i am blogging.)

check ya later-
the carys

Wednesday, September 2, 2009

sit sit sit

So...here we sit. Ridge is napping; I feel like I type that a lot but he doesn't actually nap barely ever....I only get a chance to type when he does.

He is doing well; I will settle for the weird pea green color his poop is....and i will definitely settle for the no spitting up! He has been happy for the most part, and likes to try our patience, or at least mine. It is easy to want to excuse some of his "fussing"...but sometimes, I know he is just being difficult. Like...choosing to eat for like 5 minutes then wanting to eat again in an hour. This...is not acceptable for/to his mother. :) We will be training him to stop this behavior....no one start feeling sorry for him in this respect-- yes, this disease is devastating to us at times...but Ridge is still "normal" other than this...so...his momma and daddy are going to have to raise him right- no excuses, kiddo. He's workin' the system....yep...he is.

I am not "in the zone" as I type this, so it might be sporadic. I know a lot of you try to keep up with us every day so I try to make sure and write every day...but please know, sometimes it might be boring or random, b/c some days I don't have a lot to say!

All we know from the doctors today is this: 1) I have a 16 page consent form (unofficial/do not sign) to read over about a potential clinical trial that would require us to go to Cincinati (I know i spelled it wrong, sorry)...I think we are leaning against that, but we have told our doctors that we will really be seeking their opinion on this and if they say we need to go, we will go. It begins in about 3 weeks. It is for a drug that has been used in different diseases and this trial is to try it out in vascular anomalies (MLT is an example of a vascular anomaly)....so...i better get to reading. 2) I just finished filling out a mondo packet of information to send off for the MLT registry (all the known cases of MLT ...well...sort of-- the goal is to get everyone w/ a diagnosis on this registry so eventually some trials can begin)... 3) the docs are all of a differing opinion about meds. not our docs-- ALL the docs across the globe...some say no way to long term steroid use and others say it probably works. some say don't use this or that in little kids, others say they've had success with it. it gets frustrating...the general consensus is that we need to control the issues/bleeding until he reaches "X" years old when the symptoms seem to get better on their own- and that IS the consensus...this gets better w/ age. it doesn't go away, but it does get better. so....again....we wait. and we hope and pray that the right decisions are made. I don't doubt Ridge will get better. I know he will. My fear is that if they/we decide to try the wrong things to "help" him get better, that he will have some permanent/long term side effects that he has to live with....and that is frustrating. Especially knowing that the disease gets better w/ age....I don't want to decide to do something that will create future problems for my child that are non-existent now....tough call, people...tough call. This is where we definitely need wisdom.

So keep those prayers coming! We appreciate all of you- and I do read every single comment made, so thank you!!! I can't address them all personally but please know I appreciate them!

love to ya!

Tuesday, September 1, 2009

no news really.....

Ridge is having a boring day. I know we're supposed to be excited about boring days...and we are. But they are still...boring. The poop-- greenish. We'll take it. It's like a typical baby poop green, not an "on the verge of becoming black" green. Spitup- rare, but normal. He's eating fine and still trying to figure out how to roll over. He's never ever ever peed into the air when I change his diaper (although he has gotten several OTHER people when they change his diaper)...but today, he let it flow while I was putting a diaper on him. Good job, Ridge. He's been jabbering and singing today...yes, he sings. He does.

Sawyer's having allergies big time; I have something like that going on b/c my head is killing me. Update on the hideous shoes-those sweet nikes that were ALSO in the picture...well, I had a dentist appt. at 2:00 yesterday and happened to get into town around 1:30...Kohl's is near my dentist's office...so...yeah, you got it. We are now the proud owners of some sweet kicks! And I'm NOT talking about the light ups...fo' sho! :)

Well...that's about all I've got. I don't have any words of inspiration today...just sitting and waiting...I hope wherever life is finding you right now, you are remembering that you are being watched after...no matter how big your problems are, you will be taken care of. This situation has shown us that. This is HUGE to us..but I know there are people going through SO much more than we are going through. God has met our every need, and I know he will continue to do so...

So wherever you are- illness, frustration, marital issues, job issues, financial problems....whatever it is...sit back. Be amazed.

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