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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

Monday, August 31, 2009

day 34, we believe

No news today really. We still have yellow poop! Ridge got a bath today so he is really clean, and has clean bandages/dressings....he is sleeping currently....he had a GREAT night last night-- needed to eat at 11 pm and at 4 am, then again around 6:45 this morning. The monitors were not going off at all the entire night, so that was wonderful. Brandon stayed up here w/ me and my mom took Sawyer home. It would be so nice for Brandon and I and Ridge and Sawyer to all be able to stay together, but since that isn't really feasible, it is nice when a grandma can take Sawyer home and 3 of the 4 of us can stay together. I tend to like not having to share the bed, anyway, but when you don't have a choice about it, well, it's not the same. So it has been nice having Brandon here so I'm not laying alone...although, like I said, at home, I like it when I get the bed to myself! I guess these hospital couch/beds and the circumstances in general change your opinions sometimes.

I have a dentist appt. in a little while and I think I will stay gone the rest of the day since Ridge is doing well. I think I will go get Sawyer from school, but first I think I will try to find him some shoes that do not have Woody and Buzz on them. If he doesn't wear them, fine. But at least he'll have the option. :) I'm staying the night at home tonight w/ Sawyer and will be back tomorrow.

Sorry the update is kind of boring-- but then again, I'm glad it's kind of boring right now.

Hope everyone has a great day!

Saturday, August 29, 2009

yay for yellow poop....wouldn't THAT be an awesome tshirt slogan? :)



Here's some updates.

1. Ridge's poop is lightening up. I don't know if it's "yellow"...but it's not dark like it was yesterday. Weird. Great!
2. Ridge is really happy. Smiling, laughing, not starving all the time, trying to roll over...and still the cutest ever.
3. Few spit up incidents. SOME, but few. And most of them have been just clear/white liquid (normal for those of you without babies...or those of you who had a baby that didn't ever spit up...yeah..sure...)
4. Met w/ our doctor yesterday morning and learned this: a) we will probably be here @ least four more weeks. 2) she actually called and spoke w/ a doctor @ the hospital in wisconsin where this MLT was discovered. he said most of these kids have blood transfusions 1 or 2 times a week for around the first year of life. he also believes the disease gets better w/ time/age, the first year being the worst. he believes steroids are good for active bleeds only. he keeps the kids on octreotide (we're on it)...and he didn't really support a couple of the drugs we'd thought about trying (we being the doctors and ourselves in agreement); one he thought was okay but didn't work in everyone and had some bad side effects in some...but there is a drug i'd asked about that he thought was promising and he'd had success with...so maybe we will start that. there is also a doctor in ohio who is writing a grant and awaiting approval for another drug to be used in these MLT cases...and our doctor was very excited about it looking promising. so we are excited. and d)i can't remember what else i learned. but i learned some more . sorry i don't remember it right now...but i had to have a d) point....and only some of you will understand why/get it. to those of you who do, i tip my hat to you. if i were wearing a hat.
5. i went home last night. sawyer stayed up WAY later than me...i don't even remember turning off the tv. friday nights are no bedtime nights usually, or at least later bedtime night...so it was okay. he watched several ninja turtle episodes (thank you uncle garret...or aunt binet' for forgetting it or leaving it at our house :) )....and i recall him waking me up and asking to watch mickey...so i rented a free mickey cartoon through cable....i vaguely remember doing that and arguing that he needed to sleep, but i was too tired to fight it, so i just went to sleep. i don't remember turning off the tv very well, but i do remember at some point he turned over and went to sleep. sheesh, the kid was probably awake a LONG time...but i was out. i asked him this morning if i was asleep while he watched his movies and he said, "yes, you were sleeping."....i'm just glad he didn't wake me up repeatedly....
6. this morning, i took sawyer shopping for shoes. he'd never been present with me when i buy his shoes...so he's never tried shoes on, other than when they've already been bought. this was an adventure...i picked out a few pairs i liked for him...and he stood on the little seat that he was supposed to sit on to try his shoes on....when he stood up he found/saw some other shoes he liked....he said, "I want those orange and white ones!" they were these bulky, skater like shoes-- tony hawk, to be exact....not too ugly on the shelf, but looked MONSTROUS in size when he tried them on....good thing he decided he didn't like them. the whole time i was praying that he didn't see the toy story light up shoes...but he did. why did he see them? b/c the box was bright blue like sky with clouds and all the toy story characters on it. and of course they had his size. and of course he tried them on b/c i let him. and of course, THOSE shoes weren't "too tight"...and of course i'd said my entire life i'd NEVER buy my kid character stuff, at least clothes-wise...and of course, i HATE light up shoes. but sawyer wanted them. sawyer didn't GRIPE about them, for the first time in MONTHS he didnt' gripe about some shoes being tight....so...i bought them. actually, sawyer's Nanny and Rita kind of bought them, b/c they gave me their Kohl's cash, and the shoes were on sale good enough that the Kohl's cash paid for them....so kind of they were free. thankfully, b/c they are dog-ugly. here, i'll show you a picture:



see those cute nikes? THOSE are the ones I like....liked...whatever.

so anyway, that's our weekend so far. and to all of you friends, family, and people who love sawyer enough to buy him things-- this is not free range for you to begin buying him oodles of character apparel. for the love- please do not...these shoes are enough. unless you buy him pjs...you can go CRAZY buying him character pjs. i'm ok with it. but all the stuff people will see him wear in public...let me choose how embarassing i'm willing to go. :)

that's all i know so far. more tomorrow if time allows.

love to you all--
the carys




Friday, August 28, 2009

the more i seek you

Thank you to a friend for this song; it took me a few days to listen to it b/c of busy-ness...but I took a break outside today and heard it...I'm posting the lyrics, bc they are great. It's also in my playlist, but I still can't figure out how to make it play on shuffle...nope, nevermind, I GOT IT!

The more I seek you,
The more I find you
The more I find you, the more I love you

I wanna sit at your feet
Drink from the cup in your hand.
Lay back against you and breath, feel your heart beat
This love is so deep, it's more than I can stand.
I melt in your peace, it's overwhelming
love him....

isn't he so stinkin' cute? lotsa smiles the last 2 days. he's the prettiest baby boy ever.
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let's have a turnaround

Ridge has been doing really well the last 2 days. He napped quite a bit yesterday and was in a pretty good little mood when he was awake. He fell asleep early last night- probably around 8:15ish...and didn't wake up till midnight to eat. Then he slept till 6:30 this morning. The monitors weren't going off like crazy either...they did go off some, but not until about 5:30 a.m., so it wasn't a big deal really. However, upon his waking, my mom changed his diaper and it was some "normalish" looking, and some dark...and the next diaper he had was almost empty, but what was there was dark again...so the dark poop seems to have returned. boo for dark poop.

ridge seems to be in good spirits, he doesn't act like he feels bad, and his counts are still stable. but the dark poop has been the precursor for the active bleeding before....let's pray that it just STOPS.
that's all the updates i have so far. keep praying- i think we are all growing weary- not worried that God isn't going to take care of us or Ridge, b/c we know that He is....but i think we are all just literally tired-- emotionally and physically and mentally....and you can step out and take a break, but it's still always just...there. so pray for rejuvenation.

whatever life is throwing at you right now, i pray that you are reminded of the provision God makes for his children. that is what helps us through this difficult time right now- constant reminders of the hand of God holding us-- and he reminds us of this through you and people like you. each of you are incredible.

thank you for your prayers and support.

have a blessed day.


Thursday, August 27, 2009


love this. i do, you do, we all do. can't tell me this isn't one cute kid.
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sawyer, at the hospital, being...sawyer
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another day of waiting...

Nothing new to report, but I know some of you check this daily, so wanted to type a note while I have some time.

Ridge has gone about 12 hours w/o any blood in the poop-- well, visible blood...and w/o any blood in the spitup. This is good news, although it may not mean he is not bleeding-- he at least is not actively bleeding right NOW. he is sleeping as I type this. The only concern I am having right now, other than just being totally rid of this disease, is that Ridge's apnea has sort of returned. His oxygen levels stay in the good/great range, so the apnea itself isn't a problem. The monitors do keep going off saying he isn't breathing. Often, we check, and he IS in fact breathing, just kind of shallowly...so, the problem is moreso w/ the monitors getting on our nerves than w/ Ridge's condition itself. I don't think that there is anything to be worried about, and neither do our doctors. But it is still annoying b/c you can only pause the monitors for 3 minutes, then they go off again. Right now the monitor says Ridge's respiration rate is zero-- but I can clearly see his little belly going up and down- he is breathing, just maybe not the way the monitors need him to in order to register. It's just annoying. So, if you could pray that this stops, either b/c the monitor decides to cooperate or b/c Ridge begins breathing the way the monitor wants him to...well, that would be great. And keep the prayers coming for the bleeding to stop and for healing and a miracle.

Every night when we pray for supper together, Sawyer says "Dear Jesus, Dear God, make Ridge feel better and give us a miracle. Amen." He doesn't understand he can also ask God to bless the food/thank God for other things in the same prayer. I can't really blame him...I know I can ask God for anything, but what Sawyer prays is pretty much the singular cry of my heart right now also. Thank you for allowing it to be a part of the burdens you carry and a part of the requests you make known to God.

Have a blessed day-

the cary fam

Wednesday, August 26, 2009

new day

Today has been good so far. let's recap from last night on. The poop-- btw, thank you to all of you cheering for Ridge's poop...that will probably never cease to amaze me or crack me up. so, anyway, the poop....it is shifting back to greenish, and has blood in it every other time or so-- mucousy blood, so i'm not sure what that means. the docs haven't been in yet today...so here's what the thought process of one doc was- possibly ridge has lower lesions also, below the stomach, as in the lower intestines or the colon. and that could totally be it. however, he is really really seeming to push the poop, but then his diapers aren't very full. so i am wondering if he's having some issues with, as aforementioned, fissures or something like that ... too bad i have no medical intelligence really. and the red stuff is watery, and not mixed in the poop, it just kind of sits on top of it or something. so it's weird. that's that.

last night, around 7ish, Blair (blaire? sorry, blaire/blair), a nurse from the 10th floor who was never our nurse but knows one of my dear dear buds from HS, came down to see us on her way home from work. Ridge was talking it up and grinning and squealing LOUDLY....as in, we've never before seen him act like that. flirt. he also was trying to roll over from back to tummy. now, i'm no dummy and i know he's 4 months old and so that's about a month or more late on rolling over-- but normal kids aren't stuck in a hospital bed for four weeks so far....so anyway, i know you will all be excited about that...and we were too.

last night, he slept from about 10 or 10:30 till 3:30 and then he ate...then he slept till 6:15 or so, ate again, and went back to sleep till 8. Good morning. Brandon stayed the night with me last night and Gibby went home with Sawyer. Brandon got up early, went to get Sawyer for school and then he went on to work. So for about 3 hours I was here w/ Ridge alone, and Gibby was headed back this way. And I was glad to have some one on one time with Ridge- as long as he wasn't going to be super irritable. And guess what? He wasn't. He was totally happy. He even laid in his bed and watched his Praise Baby DVD twice while I was getting ready. He talked to the tv and cooed and squealed. Now Gibby is bouncing him to sleep. Good stuff, so far today.

Waiting on the doctors...hopefully they will be here soon.

Nothing else new,I don't think. Keep praying. Pray that the blood we see is not from a new location...eek. Pray that Ridge would be healed and be well and be whole again. Pray that God would choose to perform a miracle in our lives and that all would know it is from Him and by Him, and that all glory would be given to Him. Pray that Ridge's life and testimony, even so early on, would continue to point others to the grace and mercy and love we all seek and are desperate for.

Love to you all!

alisha, brandon, sawyer, and ridge

Tuesday, August 25, 2009

later today...

I know I already posted today. You hate to ever "jump the gun"...but you also, when in this type of situation, celebrate all the victories, and so I have one to share. A little while ago, Ridge ate. He did spit up a couple of times, but both times, the spit up was completely white- no blood, new or old, in it. He did have a dirty diaper (or 10 today...sheesh, kid)...and while it had a little bit of blood (TEENY) in it, it was more yellow than the other diapers have been today. The poop, not the blood, was yellow...duh. Yellow blood-- well, that would just not even be identifiable. Our GI doctor for the week is watching the specks of blood in the diapers, but she isn't convinced one way or the other that they mean he's bleeding-- it could be something totally unrelated...guard your eyes if you get squeemish....like a fissure or something- for those of you who don't know what that is, it's just a little crack or tear in the pooper. Sorry for TMI, but when your kid has a disease that often makes itself apparent in vomit and poop, well...all I can do is say sorry, but that's the kind of info your gonna get sometimes.

Anyways, I was excited by that observance, and therefore, was not surprised to know that when he had his bloodwork done this afternoon, both his hemoglobin and his hematocrit (which they also measure, but i'm not sure what it means exactly) were up from whatever they were this morning. yep.

so at least for now, good news! you and i both know it's b/c you guys are praying. so keep it up.

love to ya-

the ridger is a GROUCH

Ridge is pretty fussy today. He had a really good night, for the most part. He only had to eat twice in the night, which is 2 feedings more than before we were admitted, but probably 2 feedings less than the last couple of nights. After 4:30 AM, though, the kid would NOT go to sleep. Finally after 6 this morning, he slept, but only for a little while. He's been awfully fussy today-- hungry some, probably crabby some from the steroids, but I don't get that b/c his steroid dose was reduced, and he's grouchier...if he's on less, i'd think he'd be less grouchy? nope.

he is spitting up white/clear with some brown in it almost @ every feeding, and his diapers are getting to be sorta green-- not a bad color in and of itself, but a little darker than they were when they were yellow...so it is still concerning.

pray that things turn around. they aren't REALLY bad or anything, but i am worried that we are about to hit another rough patch.

worried. yes, i said worried. i know, don't worry about tomorrow...i know. just keep praying! :) we know the road is long, and we know we need to be patient to wait on the Lord. Sometimes, if not all the time, though, it is still hard. What would normally be a little pebble in the road can sometimes seem as big as a boulder right now.

Pray for better days than today. Today wasn't horrible, it just wasn't up to par in my book. But I'm not in charge. So if we can't have better days, pray that Ridge's mother would be overflowing and busting at the seams with patience. :)

love to ya-
the carys

Monday, August 24, 2009

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back to the hospital i go...

So I arrived @ the hospital at around 7:55 this AM....Ridge was sleeping. Shortly after, I gave him some medicine and then he got to eat. I've changed two poopy diapers that are still fairly normal looking but have shifted to a less than yellow color....and both have had a teeny speck of red in them. The doctor said not to worry about that yet since it could be from something else- I won't gross anyone out. But we are to keep an eye on it. Ridge has mainly been fairly cheerful; I've seen several smiles today. His vitals look good. He IS getting blood today b/c his hemoglobin fell just below 8, and anything below an 8 warrants blood. But this is the first time he's had a transfusion in a week.

We got a new GI doc today; all of them have been great, and I can tell I'm going to like this one. All of the nurses on the 8th floor have been amazing so far. We've had pretty good nurses the entire 4 weeks. SHOOT, I just erased an entire paragraph. Basically I said that it makes a huge difference when we have a great nurse. Most of our nurses have been excellent on every floor. You expect ICU to have great nurses, and it did. We've been on two different floors, and have had excellent nurses on both of them almost always. I think the difference in a great nurse and an okay one is familiarity with your child's condition-- we have had 2 or 3 in the past, not now, who didn't really think Ridge was sick, and kind of ignored him for the most part until his condition was urgent...which is understandable I guess, but hard to swallow as a parent. Most of our nurses on the 8th floor have done their research or asked us about Ridge enough to know that his condition doesn't make him LOOK too sick, but that he can get REALLY bad REALLY fast. All of the gals we've had so far have really honestly been exceptional on 8th floor. I know some of our nurses from floor 8, PICU, and maybe floor 10 read this-- so here's a shout out to all of them, b/c we love them! Thank you for taking care of us. You are doing a great job! I'm sure if you're reading this, you're one of our favorites!!! Thanks for following the blog! All of our nurses this week have honestly been amazing, and made our time a blessing....we hope we've been a blessing as well (although I know at least one of them saw me at a high stress moment at least once this week! apologies to her!)

Anyway, we are waiting and praying. Part of me is so sick of all of this. But I know I have to wait it out. My prayer is that God will heal Ridge completely. FOREVER. However, I do know that it seems like with time, this disease lets up a little....so the load may lighten as we travel the road...we shall see.

I'm trying to get the songs to play on shuffle on the blog so you don't hear the same one every time you check it-- I'm not sure how to do that...suggestions? I hope you are listening, though, b/c these are the songs that are ministering to us through this journey....and as you find yourself in hard times, big or small, I hope these songs will minister to your life as well.

Love and blessings to all of you! Thanks for everything!
alisha, and the cary guys

Sunday, August 23, 2009

weekend...

So, made it home Friday night. Took forever to get "adjusted" in my house, but finally Sawyer, myself, and my mom watched "Handy Manny" and slept on a bed of blankets in the living room. Sawyer watched Handy Manny...mom and I crashed. I woke up a bit later to sawyer saying "Can we watch it again?" no...plus, we didn't even watch it the first time!
Saturday, Sawyer and I read books @ the library for about an hour then went and grabbed some lunch...grabbed a nap...then headed to see brother Ridge. Ridge was looking cute and chubby and ready to see his momma. I was ready to see him, too. We had a good four hours @ the hospital; Ridge's counts are staying stable for now.
Today, plans are to go to church- just Saw-man and myself...then, I will hopefully cook him lunch b/c I know he hasn't had one thing his momma cooked in like four weeks. That's probably sadder to me than to him, but it still is hard for me. Then, we'll take a nap and head to the hospital for a few hours...Tonight will be my last night at home till hopefully next weekend...and tomorrow a.m. I will take Sawyer to school! I am excited to meet his teachers.
Yesterday on the way home from the library, I got kind of choked up as I was telling Sawyer I was sad Ridge is sick. Sawyer said, "I'm sad Ridge is sick, too. And I'm sad Daddy can't be here b/c he has to be @ the hospital b/c Ridge is sick. I'm sad we can't all be together. There's two people missing. Daddy and Ridge are missing." He kept going...and I just kept crying. I know he isn't really fully understanding...but he knows things aren't "normal"...I know he will adjust. But I don't want him to have to. I know God has laid this road out before us, but it is so hard in the sense that "normal" has been overturned and both children are rarely with both parents and I hate that, b/c that is how I want my family to be raised. I know not everyone is fortunate enough to have both parents around for many different reasons; but this should not be one of them.
We keep praying. We ask you to do the same. I am excited to be with our church family this morning and to hear a word from God and be able to sing praises to Him. I pray your Sunday is blessed. I know ours will be. Have a great day. Keep asking for a miracle!

Alisha

Friday, August 21, 2009

sitting...and waiting...

waiting on some CBC results...apparently, two days ago, ridge's platelets were up around 136K..b/c of transfusing. yesterday they were already back down to 39K, which was a little surprising but not too much. This morning, they told us the platelet ct. was 139K or something. weird weird, so they did another CBC to see if there was a lab error. hemoglobin is down, but not to anything too worrisome yet-- 8.6.

so i am posting this with a little 'weird' feeling-- disclaimer here-- please feel no obligation to what i am about to post, it was not our idea and we are so appreciative of it...but we don't want to send the wrong impression by posting this information. so know, i am only publicizing this b/c people have been ASKING me about what to do/if we have one of these/etc-- we do have a contribution fund set up for ridge. "someone" who has been taking super good care of us was working on cash donations, and some other people asked if we had a fund, so that "someone" helped set up a fund for us. if you would like to donate, or have people asking about this, the fund is the Ridge Brogan Cary Contribution Fund and donations can be made @ any Bank of Oklahoma. For those of you down near Hollis, I believe Stockman's has a fund similar set up. please do not feel obligation here-- i am only posting this due to the frequency with which questions about this are coming up.

as far as blood donations-- if you'd like to donate, feel free to do so. a few weeks ago, OBI told us to wait a couple weeks. it's been a couple weeks. We aren't in need of the blood right now, but credits still help us for when/if we are in need. A few items you may not know: To credit blood to Ridge, it costs you NOTHING. it is just one extra step, verbally, you have to make when you donate blood. He doesn't necessarily receive your blood, that's why it doesn' tmatter what type you are. He gets a credit for you donating, which helps diffuse our cost (b/c you do have to pay for blood). Another thing people have wondered about apparently, according to OBI-- do we have to replace the blood we use? As in, if we use 25 units of blood, are we responsible for getting 25 units donated? and if we don't, do we have to pay an extra fee? NO. we pay for the blood we use but we are not required to "rebuild" the supply. However, i believe you who are donating are rebuilding the supply anyway! It isn't necessary, but it is good if it happens. Again, your donations in Ridge's name help us b/c it lowers our financial cost. If you are o negative, not only does it lower our financial cost, but it increases the blood bank supply of o neg blood, which means there is more o neg blood available for ridge to use/be given.

Sorry the blog was so "informative" today and not necessarily "inspirational" or "entertaining." I just don't have a lot to offer right now b/c we aren't really in a hill or a valley, we're just kinda sitting on a plateau or something. I liked geography, but I wasn't great at it. my apologies. :)

God bless!

Thursday, August 20, 2009


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slow slow slow he goes....

Well...today is slow. Ridge is doing great; steroids will be cut back Sunday b/c he is on a super high dose....we will try those for about a month, gradually lowering the dose. I absolutely believe that if meds are working, THOSE are what are making him better. When he is cut back all the way on them, if he is not better "on his own", they will try a different drug other than the octreotide he's on, as far as i understood. This is exciting to me b/c I am all for trying something out that might "fix" this...of course, we all know what we all want to happen. what we keep praying for is what you keep praying for. we believe Ridge will be healed, one day, one way or another. We believe God will preserve his life here on earth. It is easier to be positive when he seems to be doing well, though. It is difficult to be positive when he is throwing up blood. Our prayer is that THAT does not happen anymore.

I don't have a lot to update. Ridge got a bath today and is free of his monitors for now so we are in the waiting room by the windows instead of in our teeny tiny room. That's about all the update I've got. I plan to take the weekend off and spend time at home with Sawyer. I am greatly greatly looking forward to that.

I will keep you posted as things change- so far, we are in a stable place....but you wouldn't expect otherwise, would you?

Wednesday, August 19, 2009

i don't know what to title this

So....today was fairly uneventful....except for several blockages in Ridge's lines. The nurse who can put in new lines came and looked him over and couldn't find anywhere to put in a new line, except possibly his arms, which were tried yesterday. unsuccessfully. While everything was blocked except one place for his octreotide med to run in, it was time for a blood count....so our nurse, who was absolutely wonderful all day long and a huge help and super nice and definitely made our "good" list :) anyway, she had to draw blood for the test...out of ridge's heel. so...one stick, and he was screaming, but the screaming got worse and worse b/c he wouldn't release much blood...tiny drops, not big drops. so it took a long time to get a little tube of blood. it was excruciating....for me as much as for him. however, the blood test came back with an increase in count-- up from 8.5 to 9.8...so that is excellent news! he is still on the steroid, which i believe helps, but is not beneficial in the long term b/c of some side effects....so we want this to NOT be the answer....we want a miracle to be the reason, so we are waiting on that miracle moment that we pray God has in store.

I went to lunch with my dad today; it was good to get out. Assuming things stay calm, I plan to hang with saw-man this weekend for a while outside of the hospital.

I am tired-- as in sleepy tired...and as in just plain old tired of all of this. Perseverance takes on a whole new meaning in light of these events. It is hard to stay patient; some days it is hard to stay positive; it is difficult to figure out how to be proactive....but it is not difficult to remember to pray. That is what most of my "spare" and not so "spare" moments are spent doing. Thank you for filling some parts of your days and nights with prayers for us and for our baby. Continue to lift him/us up...b/c I do not doubt God is just waiting on the perfect moment to answer them with power.

Much love!
carys

Tuesday, August 18, 2009

sixth time the charm?

so...we're in our new room back on the 8th floor. This is our sixth move so far. Twice we've been in ICU, so idk if you can count those as "moves" b/c we had to go there (and loved it- everyone there is great.)...but four times we've been moved to regular rooms....Tonight is already looking up, b/c our nurse is someone we've had before and who is familiar with us and Ridge...and has even read the blog and been praying for Ridge! :) She was with us the night Ridge first started to actively bleed two weeks ago...we didn't know that's what was happening until the next day, though. She was so patient and calm as we were dealing with a stressful mess at 2 or 3 in the morning that day...so here's my shout out to Susan-- we're glad you are/were our first nurse on 8 this time around!

Ridge's hemoglobin is slowly creeping down-- he was at an 8.2 I think around 8 tonight. they will check again at midnight and possibly have to give blood.

The platelets were given today, but when the procedure was started, the nurses doing the procedure couldn't find a vein for the line they were trying to place. So...we had platelets and some sedation given, but nothing came of it. Ridge is almost down to one line-- his new broviac catheter in his chest. That is scary to me, b/c that is where he receives his meds, and if he only has that one line, those permanent meds must be disconnected if he needs to be transfused. I don't like that idea. My husband says that probably...he (Ridge) won't even need two lines so to stop worrying about it. It's a good thing we have one another, b/c w/o fail it seems the things I worry about, he has a peace or greater faith than I do there...and when I am calm and have faith it seems he is worried....but under it all, we both know God is in control...sounds so cliche...but really, we know it to be true. So we press on.

Tonight Ridge has been so fussy, and he's like a bottomless pit when he eats...seriously, the kid is wanting to eat constantly and is taking in at least double what he normally takes in. I'm chalking it up to the steroids, but idk if they'd really make him THAT hungry. Ridge also pooped on my leg tonight, so that was fun....I hope my jeans come clean after that incident....
Brandon's grandma and great aunt are here, and Nanny brought us some good supper tonight, so that was a nice nice surprise!
Sleep is begging me right now, so I'm signing off. Keep those prayers coming. We need them, every moment of every day!

Praying that God will show His power and majesty,

alisha

three weeks today...time stands still to everyone here but us?

I hate to get frustrated over any of this b/c it's out of my control...but that in itself is frustrating. Ridge was supposed to get a more permanent temporary line put in his arm today, bc the line in his leg isn't working well, and the permanent line in his chest has only one place to pump meds in or draw blood out, but can't do both at the same time, b/c...well, you'd need 2 lines to do that. SO anyway, the nurse who will be helping w/ the procedure comes in yesterday and gives me all the "scare you silly" risks, all the while you know you don't have a ton of option but to sign consent b/c your kid needs the line in. The way Ridge's disease works, or one thing it does, is "gobble up" platelets. So, there is no sense in pumping him up with platelets b/c his body destroys them and, in fact, it causes his condition to be worse. But to do a procedure, platelet counts have to be up to 50K. Ridge is NEVER at 50K, so he was going to need to be transfused. I told the nurse that (the one who will be doing the procedure), but I also explained to her they wouldn't transfuse unless he was below 10K, except in situations like this where a procedure needs the counts to be up to 50K. So I said probably they would transfuse in the night or early morning. I am really struggling to stay calm and keep the faith this morning, b/c apparently, no one made orders for platelets. When I said he would get them in the night or morning, I was assuming that SOMEONE would order them. I don' t have authority to make it happen. When I got up to Ridge's room @ 7 this morning and he hadn't received platelets, it sure didn't appear like it was a major concern to anyone else. But when the team shows up to put the line in I promise it will matter. I don't get it. I think all of our nurses are great, and it isn't really any one of their faults- it's the other lady who didn't tell someone to make the order...or she did and they didn't do it...or they did but it didn't get passed on, or maybe they decided to just not do the line at all, but either way, if someone could communicate with me on this stuff, that would be super.

I have literally been sick to my stomach over it this morning. Then an ebb of semi- sanity will flow over and remind me that he hasn't had that line for 3 weeks, one more day won't probably matter. Everything comes as no surprise to God, who knew this would happen, and he knows why it happened. I am trying to remember that...it's not like we haven't dealt with heavier issues while we have been here. But this one is really hanging me up, andI can't figure out why. I just can't get a peace about it and I'm just getting frustrated beyond belief...b/c the time is just ticking away on the clock above me, and I can't figure out why the platelets haven't even been requested. I don't get it. It's been an hour since I requested they check on the situation...and no checking has been done. Pray for peace along with healing. No moment here has given me as much unrest as this one, and again, I can not pinpoint why, but for some reason, it just keeps eating away at me.

Monday, August 17, 2009

day 21 here we go.

Ridge had some blood given last night; his counts were up right after that, and remained up all night, and this morning as well. He did spit up some brownish blood earlier this morning- and the diapers are still bloody/dark. He is on steroids to help him get over this hump, but they are not a long term option. He is fussy right now. There is discussion of upping his meds, which means he can not eat. There is still discussion of surgery. We got a new GI doc on call today....and he said they just don't know what to do and no one in the country really knows how to treat this disease...it's kind of just a "best guess" type option....so that's fun. Hearing that just reiterated the fact that we need a miracle. There is talk of going in and scoping again-- my prayer is they go in and they say...WHAT? There is NOTHING there, no lesions, no bleeding, no nothing. I will be praying for healing like never before this week. I ask you to do the same. I know God will act in His time, but I will be pleading that His time is now. Today. Be swift, Lord.

Sunday, August 16, 2009

stole this from someone's facebook...but...it's from the Bible, so it's fair game, right?

Psalm103:1 Bless the Lord, O my soul, and all that is within me, bless his holy name! 2 Bless the Lord, O my soul, and forget not all his benefits, 3 who forgives all your iniquity, who heals all your diseases, 4 who redeems your life from the pit, ...who crowns you with steadfast love and mercy, 5 who satisfies you with good so that your youth is renewed like the eagles.

and it just keeps coming

We are having a serious rough patch. Friday night, Ridge entered ICU grandly by throwing up blood all over the floor. This is how we entered ICU the FIRST time. He wants everyone to know he IS here, and he IS in fact needing some medical attention, I guess. Friday night we had 3 rounds of bloody vomit followed by a couple of bloody diapers. I apologize for the "too much info for some of you", but there are others who this is the best way to follow exactly what we are dealing with. Last time we dealt with an episode, day 1 was the worst. This particular episode has lasted over 24 hours and is still going. Yesterday he had another vomiting issue, and 3 diaper issues I believe. This morning, we have had 2 bloody diapers already and another large vomiting blood incident. The doctors will begin Ridge on steroids today to hopefully reduce the inflammation of the lesions and reduce the bleeding. Our GI doctor has been in this morning and told us we have to figure out a way to reduce the amt. of lesions so that we can reduce the amt. of bleeding. This most likely means some sort of surgery- either by removing part of his stomach or by scarring the tissue that contains these lesions. Not what we want to hear, but glad that there is SOMETHING that might be able to be done to reduce the actual lesions. It is just a desperate feeling-- not necessarily in a bad way- looking at your doctor and telling them "we support whatever you decide, b/c we do not know at all what the best thing is in the situation. we put our son in your hands, knowing, he is not REALLY in your hands, but God's." We have been fortunate this week to have a doctor who vocally agrees with statements like these. We get a new GI doctor tomorrow, and then I believe we begin again with our first GI doctor-- so we've made it through almost the entire GI faculty! :) It is somewhat peace-bringing to know that even in the darkness or ugliness that is surrounding us now can not swallow us- because regardless of good news or bad, God is here. He is watching over us, and He WILL do what will bring most glory to Him. We will overcome this- by His Might, His Power, and His Grace and Mercy.

Last night, and for the next night or 2, we have a sleep room downstairs. It's so so nice, and for the first time since we've been here, I left the room @ night and stayed down there... and slept. Not that I haven't been sleeping when I was in the room w/ Ridge, b/c I have- and fairly well. But last night, I had that room all to myself and I slept for a good 10 hours. Before I went to sleep, like always, I prayed for Ridge. I prayed for Sawyer. I prayed for Brandon and myself as well. I had to just get on my face before the Lord and cry out to Him...for comfort, for strength, for well being for both of my children. For a miracle for Ridge. For God to be gracious and take mercy upon my family. We are ready to see Him move. We are ready for you to see Him move. We are ready for Him to show everyone who knows about this situation, and those who do not, that He is still Mighty. He is the same God who rescued Daniel from the lion's den, Shadrach, Meshach, and Abednego from the fiery furnace, the same God who healed the leper, gave sight to the blind, stopped the woman's bleeding after 12 years...the same God who brought back people from the dead, and the same God who sent His son to die, and raised Him to eternal life forevermore. He has not changed, and He still has the power to do such amazing and miraculous things, and we will not ask for less. In faith and confidence, we will boldy, and yet with humility, ask Him to rain down mercy upon us and show His power.

Saturday, August 15, 2009

the day after yesterday

The vomiting blood has stopped. Ridge is still getting rid of the blood out the other end, which for some reason, to me, is scarier...no, it's not. It's all scary. He is sleeping soundly right now. He has been fussy some today. We have an excellent nurse today here in the PICU. I am tired. Yes, physically tired. But moreso, I am just drained. I appreciate all of the prayers for us, and for Ridge. We can feel them, they do lift us up. Thank you to any and everyone who is praying in faith that Jesus would heal our son. This is still the cry of our heart- that God would bring glory to his name by healing Ridge...by making it so obvious that it was Him and nothing or no one else who did a healing work in Ridge's life. Brandon and I have talked about how in the Bible, the people Jesus' healed usually had to live with a disease for a while, then all of a sudden, Jesus would heal them in a way that was so obviously a miracle, even if they were instructed not to speak of it. We believe the Lord has the power to deliver our family and our child from the monster I think this disease could possibly be, or is. Sometimes Christ healed someone right at the gates of death, or even all the way through the gates of death. We are praying in faith that no matter when he chooses to show up, that it will be Mighty. That it will be a miracle in which no one will be able to question the authority and the sovereignty of God. We know that He is able. We will continue to daily ask him for a miracle, and we plead with you to do the same for us, and for the glory of God. We have people ask if they can pray for our son, with our son, with us, over us, etc. etc. etc. You don't have to ask- the answer is yes. Pray where you are. Write out your prayers here if you want. You can pray here if you visit. We will not turn them away, as long as you are praying to the only One-- the true Healer, our savior, Jesus. We could not ask anyone to do more than pray for us, because that is the absolute MOST any of you can do- so we are asking you to faithfully plead with confidence @ the throne of the Father- miraculous healing for Ridge.

Friday, August 14, 2009

scary day part 2

Ridge is now in ICU. He made the same grand entrance to ICU this time as last time- vomiting blood everywhere. This time was worse- so far, in about an hour, he's thrown up 4 big amts. of blood and clots. It is the worst thing I have had to watch as a mother, or as a person in general. No one should have to go through this or watch their child go through it. Pray for healing. Pray for our miracle.

scary day

Ridge is getting blood right now. We had a serious scare earlier today- Ridge began fussing, we assumed it was time for him to eat again. So I took him to hold him and noticed his cry was weird...his face looked pale...and his lips were turning white to blue. So...we had to run to get the nurse, soon our room was full of nurses and a resident and a doctor and more were on the phone. He wouldn't stay awake, and Nancy, one of the nurses was doing a good job trying to get him to stay with us...we still aren't sure what the heck happened, but soon he perked back up. It was the weirdest sound/cry I've ever heard, like he couldn't breathe, but all of his stats on the monitor looked normal. We were supposed to move to a different floor tonight, but this scare is instead moving us to the ICU, which is sort of good news b/c they monitor like a hawk. He is fussing, so I gotta sign off here, but keep us in your prayers. We are constantly reminded that God is controlling the situation...but sometimes that reminder comes in a scary package.

Thursday, August 13, 2009

i forgot-

Also, we received definite confirmation yesterday that Ridge does for sure, 100%, have MLT. We also did a news interview yesterday, and here is the link:
http://www.ksbitv.com/news/53072457.html

We are so thankful for all of the prayers that everyone is sending our way. We need them- every moment of every day. So keep them coming. We love you!

sorry for the delay

I haven't posted in a couple of days b/c...well...I've had little to post about. Nothing has really changed here...Ridge is still bleeding, his meds are still the same except for a few additions. We didn't have any sleep apnea issues last night, thank goodness. He is supposed to get his broviac line in today- sort of like a port- in his chest...so he hasn't been able to eat since 2 am....but now it's almost 9 and they say he won't get in till around 10:30 at the earliest, but he has to get blood before then and that takes about 4 hours...so basically he has to go ALL day without eating. I'm so frustrated because I could've let him eat earlier this morning and he would not be so tired and fussy, and most importantly, bleeding as bad. It's just so annoying b/c I know no one really knows how to address this disease and everyone is doing the best that they can and trying to help our child get better, but anyone who is a mom knows that it just never seems good enough bc you would give your life for your child to be made whole, or at this point, to just stop bleeding! I have to keep reminding myself that even these little frustrations, like Ridge not eating, are moments that God has already seen. I am my child's advocate, so I do have to speak up in these frustrating times, but I also am trying to keep my head on straight...because regardless, God knows what is going on...and unlike humans, HE is watching out for my son, evenmoreso than I am. And He already did give his life for Ridge to be made a different kind of whole. So, I am trying to remember that. Pray that Ridge is healed. Pray the bleeding stops. Pray that we will remember the sovereignty of God in these trying times and be given a peace that surpasses all understanding.

Monday, August 10, 2009

two weeks tomorrow

So...they are taking the nice recliner out of our hospital room. A patient is arriving in the room that the recliner goes.....so, off goes our third person sleeping place. We have a nice lovely uncomfortable rocker to get us through the night now...it will not not not be easy to sleep in! it does not recline! being spoiled was nice for 2 nights. ok, 1. the first night doesn't count b/c we didn't sleep well the first night.

so, here's what's going on. Ridge has been having some dark dirty diapers again, but it seems like they are turning back around. We attribute the darkness of the diapers to a couple things...1, Ridge couldn't eat for a while today....that is possibly a coincidental factor, but last time he couldn't eat, the same thing happened. 2, somewhere between the drs orders and the pharmacy and the nurses, the wrong amt of his medicine was given. This is a big deal b/c it is a continuous drip. And it is what controls the bleeding. So all night, he received almost zero meds....I know some of you might be open jawed right now wondering how they could mess up his meds...i want to feel that way, but i just can't...there's no way i could've changed it. I even had the nurses double check it and have the resident doctor double check it. They all thought it was right. At least it was too little instead of too much, I guess? What's done is done. They fixed it, and they admitted they messed up- they just wouldn't say "who" messed up.

Today was a good day though. I tickled Ridge this morning, and he giggled/chuckled/actually laughed. It was beautiful. Both of my kids are so precious to me. I hate being torn between the two of them, or so it feels, anyway.

Ridge has been so sweet today, more like himself...smiling, talking, being peaceful, even napping. We have a sleep study tonight to figure out the apnea/breathing issues, though he hasnt been having them so far today...blessing that is, but if something's wrong, it needs to show up when we do the study! MRI in the morning to check for neurological issues or something b/c of the apnea, i think? I don't know, I just do the tests b/c I want them to know for sure what is wrong. But MRI means sedation which means no eating, which could mean more dark/red/bloody dirty diapers. This is like some mystery we're having to solve...only it isn't really that exciting b/c it's happening to us.

We are sleepy and about to get some rest for the night, hopefully. Our nurse is someone I know, so that should be good. Last night I was so exhausted I fell asleep praying in the chapel and my mom had to come find me b/c i was so asleep i didn't hear my phone ring-- three different times.

Today we had some visitors-- two wonderful women I grew up around. One who is like my second mother and who has been faithful to visit four times already, I believe. Such a blessing every time I see her. The other has always been a woman I look up to, b/c she has faced much adversity with much grace in her life. She has gone through times I don't think I would be strong enough to go through, and seeing her today really did mean so much to me. I know she understands my pain right now. Thank you to both of you for visiting us, and for taking care of my mom tonight as well. I love you both dearly, and it really did make my day to see you.

I believe that prayer changes things. I believe that God is good. I believe that God knew this would happen even as Ridge was being built over those 9 months I carried him w/in...and I believe that God can heal him. i am pleading for my son in prayer, and I ask you to approach the Throne of Grace with confidence and boldy ask the Father for a miracle within my son's body.

Thank you for the prayers. Thank you for the cards and calls and visits. Today was an easier day...even at the hospital with my baby receiving another transfusion, somehow, I felt a little normal. Not that my circumstances were normal...but I just felt a little normal. And that was good.

Sunday, August 9, 2009

thoughts for the end of today

First off, thanks for all of the prayers and all of the comments. We appreciate everyone who is standing in the gap for us. As far as blood goes, in answer to a previous comment, we are good for now, but please consider donating for Ridge in 2 weeks, a month, or sometime in the near future when supplies will be down some again.

Today was a really hard day. I want to be asleep but I've stepped out while they change a dressing on Ridge's central line so that I can avoid hearing his screams/cries...although I actually hear them through the heavy double doors and over the blaring TV here in the waiting room.

I have felt like I've been walking with my head in a cloud all day. I took some time to pray this afternoon and several songs sprung to mind. I was so blessed to read the comments on the previous blog, b/c some of you shared songs and verses that blessed me this evening. As I prayed this afternoon, I was convicted that I have not given my son completely to Jesus. I have tried, but I haven't done it. As a mother, I want to fix him. I want to scream when people don't take care of him like he is their first priority. I am broken for him and would do anything to trade places with him. I just want to stop the bleeding (which has started up again) and take him home and play with him and love him. I am just so "lost" feeling right now. So I took some time to be reminded and to recommit my son to the Lord. During this prayer time, one song kept coming to mind. I will share it here, forgive me if the words get messed up. This is my cry today...

Hungry, I come to you, for I know you satisfy.
I am empty but I know Your love does not run dry.

So I wait for You....so I wait for You.

I'm falling on my knees, offering all of me.
Jesus, You're all this heart is living for.

That's not all of it, but that's the part I can't stop feeling. I just feel so desperate and needy for the Lord to just pick me up and hold me and carry me straight through this. I keep praying that God would just heal my son...in the Bible just a touch of his robe healed the woman who had been bleeding for years. I desire that for my baby boy-- just a little of the power of Christ in him to heal him. I am so desperate to see God in this. I know he is here. I know he has done mighty things. I just want to see and hear him with an abundance of clarity...there is nothing and no one else I can cling to any tighter than I am clinging to Him...I feel like a lost little child right now.

Exhaustion is creeping in. I went to the chapel tonight and prayed long and hard for my son. I was about to come back to the room when Brandon called and said to wait a few more minutes. So I sat down and prayed some more....and 20 minutes later my mom is sitting by me waking me up from the hardest sleep I think I've slept in forever. I'd missed 3 phone calls from her and Brandon trying to tell me to come back to the room....I was just completely zonked right there in the pew of the chapel.

Pray for us. Pray for rest. Pray for Ridge- for healing, for the bleeding to stop, for the breathing/respiration/blood-oxygen levels to normalize, for wisdom for the doctors b/c I know this is a confusing disease for them to be having to treat, and that is scary to me. Pray that our nurses would understand that this is a serious disease, b/c I am afraid my son will be overlooked b/c he looks perfectly healthy on the outside and his vitals are usually good. But he is having serious internal bleeding. He is also having serious apnea issues at night. We are afraid for him, and we need to feel like we have some people taking care of him who understand those concerns. Pray he would be made whole again.

Thank you for everything you've done for us and are continuing to do. Much love to all of you.

i don't even know

So...we are kind of having a rough patch. Ridge seemed to be doing really really well. He still seems fairly happy/content...but we have come to some new crossroads.

Last night, they moved us from ICU to a regular floor. We were excited b/c he seemed to be doing so well. We figured we'd get a good night's rest and things would go great. As soon as we got him down to sleep....there went the monitors. Apparently, for some unknown reason, Ridge keeps having apnea spells at night-- he stops breathing...for like 15 seconds. This happened REPEATEDLY last night. So...we got basically zero sleep. Which makes for a tough day. His blood/oxygen level kept dipping too low as well; no one seems to know yet what could be causing all this. There is a sleep lab here in the hospital so hopefully we can get in tonight...b/c staying up all night AGAIN is going to be hard on all of us. These secondary symptoms are bothersome. Some of you will wonder if it has to do with the meds he is on...and we wonder the same thing. However, he doesn't really have another option as far as the meds that stop the bleeding in his gut. Especially since some of the diapers that had turned more "normal" are changing a bit in the opposite direction again.

I don't have a lot of things to say today. We were sitting in the room today and I just felt completely shaken...even with Ridge's improvements...these setbacks are...just that, setbacks. Setbacks in a cure/treatment/management. Setbacks in our spirits and our emotions. I need, we need, God to reign down in power. We need to see a miracle. We need to be given more hope. And I hate that b/c it's not like God hasn't worked a million miracles already in this situation. I'm not mad at God. I'm mad at myself for letting whatever or whoever affect my faith in our God. I am mad b/c I need that faith for my son. I need God to carry us now; I need to feel overwhelmed with peace from His presence. I need more good news. We all do. It seems selfish. My focus is off. I need time to breathe, to mentally step out of the situation. I am constantly thinking of some adage I heard in a song or read somewhere or something, and today, it fits just perfectly. In the midst of all of this...the victories, the setbacks, the great nurses, the not so great nurses, the answers, the questions, the doubts, the fears, the joys....in the middle of it all, here is our plea--

Even so, come Lord Jesus.

We pray your day is blessed today. Remember us as you pray.

Friday, August 7, 2009

are you kidding me?

As if all the aforementioned things aren't divine enough, I have to tell you what else has happened.

I am worried about not working. I am worried about not being able to have a place to put sawyer while I adjust to staying home with Ridge, b/c we can't afford daycare....so...

The school has worked things out where I should be able to at least collect my paycheck for a few months due to sick leave/state laws/sick leave sharing where others are willing to donate some days for me. My principal has been more than supportive and has told me I have a job waiting for me when I am able to come back. He is checking on things for me and taking care of some details. His secretary told me that there were some more good things happening and she'd let my friend Melissa tell me those things. I could tell it was going to be something that brought me to my knees...and boy was it. Melissa calls me today and tells me that she knows I am worried about Sawyer. She has worked it out where he has a place at the 3 year old program in our school district. His tuition and lunch and school supplies have all .... been....paid for. all of it. are you kidding me? seriously? God is so good. so so so so so good. We are so blessed to have a community and to have friends and co workers and church members who love us so much.

A normal family like us never expects to be blessed as much as we are being blessed. This has been an amazing ride.

God is so faithful.

The hand of God at work in our life and in others'

So today has been interesting. Not much change in Ridge since my last post. But check out what I am about to tell you.

First, we were told that the doctors in Miluakee do not believe this is a fatal disease. That is not to say that no children have died from this or no children will die from this- but they do believe it is manageable. This is good news to us, b/c we had not been told that yet.

Second, you have to hear some of this craziness. Okay, so I was getting ready this morning, and over and over I have wondered why Ridge's diapers were not checked for blood seven weeks ago when I took him to our pediatrician. I have tried to be understanding. Tried to explain it away. Tried not to be upset or bitter. I just didnt understand it. Everyone at the hospital who saw pictures of similar diapers knew by looking that there was blood in the poop (sorry if it's TMI for some readers). I did not get it...but I do now. Keep reading. I also am baffled by the odds of having this disease. Divide 35 by 6.5 billion and figure it out. We have a 1% chance of finding out Ridge does NOT have this disease. That figure looks incredibly hopeful compared to our odds of him being diagnosed with it. I say that somewhat in a joking fashion, b/c I know our medical teams are pretty certain he has MLT. I came to a peace this morning that the odds of having that disease are so slim to none, that for whatever reason, God is the only one who could orchestrate that. Please don't misunderstand- I am not happy Ridge has this disease. But as I keep typing, and you keep reading, I pray you will see how active the hand of God is and has been in our lives...and we didn't even know it. Okay, so here we go....I made peace about the diaper issue...for whatever reason, the pediatrician didn't check them for blood, and the odds of tha thappening are probaby slim to none, so I figure for some reason, it was meant to be. Earlier today, some of the doctors came in to talk to us. We were told about some possible treatments/how we deal with this when we get home/etc...the doctors were astounded by the response of people going to give blood for our baby. The doctors were very appreciative of our attitude, and mentioned something like, "you guys are the perfect parents to have a baby with this condition. he is lucky you are the parents he has." luck...maybe. but i doubt it. we all know it's Something bigger. Then...we were told this. Apparently, we came at just the right time to Children's. Not because Ridge was in grave danger, though I believe he was. But because...the week we arrived...was the first week that our initial GI doctor was here @ Children's. It was his first week here...HIS FIRST WEEK HERE. If you do not see the significance of this, here it is-- he came here from the hospital in Miluakee where this disease was found! He knows the doctors who treat this disease! It wouldn't have mattered if our pediatrician checked those diapers seven weeks ago, because even if we were here, they wouldn't have had a clue what they were looking at or how to get the resources to treat it! Do not tell me our God is not in control, never again will I doubt. We were also told, before we came here, that it would take a month to get into the GI dr. at Baptist Hospital...it took 2 weeks, and that put is in the EXACT right timeframe to be admitted to Children's when we were. I am in awe. Keep reading.

Almost six years ago, my husband and I were needing a different job. My husband was a part time youth pastor...and it looked promising that we would be hired full time at his home town church. I have not shared this story with many people. Some of you will hear this for the first time, and I hope you see God's hand at work here...and are not offended by anything I write. We interviewed, and really believed with all of our hearts that God was going to work it out for us to go there. That was the impression everyone there gave us. Then, one morning, we got a call that said for whatever reason, unanimously the team had decided that was not what God wanted. We were stunned. I'm not going to sugar coat it here- I was upset. I couldn't believe it. I was hurt and angry for a long time over that b/c I honestly believed a mistake had been made. Since that time, we have tried twice to move to Hollis for teaching positions (hollis is my husband's hometown). Once, it was basically promised to us that we'd both be hired. Then...that didn't happen either. We became so frustrated we just gave up trying to be that direction. Ridge was not even thought in our minds at these times. Hollis is about 3 hours from OKC. There is no way that we could live there with the disease Ridge has. God knew. Even then, God knew. Any doubts or questions or anger can be lifted, b/c all of this was all in God's hand even then. SERIOUSLY? I am baffled.

These are not coincidences. There is more to share I think, but my mind is blank right now. I will update as I have time and as I remember other ways God has been active in this, even years ago.

We would never wish this upon our child. We would never wish this upon your children. But we have been chosen by the Lord to walk this road for however long He desires us to. We still believe God can work a miracle in Ridge's life. We pray that He will just FIX IT. But if He chooses not to, He is still Mighty. He is still God. He is still watching over us. And we will still praise Him.

day 11 in the hospital

well..i can not say time has flown by quickly. here's the update today, so far, before i go grab a quick shower while there is a bit of time...
Ridge's platelets dropped to 50K last night, so they transfused again. His hemoglobin dropped a little, but was not enough to do another RBC transfusion. His temperature got very low (94-ish)...so they put this blanket under him that airs up w/ warm air (Bair Hugger is what it's called). finally that got his temp up some, so we are monitoring him today w/o him having to be laying on that blanket thing. His heart rate and respirations seemed better when they got his temp up. He is still eating well, but is possibly somewhat dehydrated, according to one of the med students here...so we will be watching that as well. He is awake a lot more in the day, but is not quite back to his normal self. His dirty diapers are beginning to look more normal. There is talk of us getting out of ICU today and back to the regular floor rooms...we are going to ask that we either be kept in icu or sent to the hemotology floor b/c there are less patients there, and we feel we need that "closer" attention. I think we have a lot of positive news, but my spirit is down today, so keep praying. Pray that we will stay positive and keep faith. Pray that God would heal Ridge. Of course we want wisdom for the doctors. Of course we want to know what treatments would work. of course we want a cure to be found. Of course we want his bleeding to completely cease for this "episode". But the cry of our hearts is for our son to be completely healed by a miracle that only Christ can perform. Some may call us crazy, but it's nothing we don't already know. And we believe God can do this. We do know He may not choose to, but I have zero doubt that He CAN. So from the deepest parts of us, that is what we are pleading for him to do. We ask you to do the same, with everything you've got. And we will let it all be to and for the glory of the King.

Be blessed today. Thank you for being a blessing to us, and to our family.

Thursday, August 6, 2009

latest update-- READ IT!!

AAAAAAAAAAAA!!! PRAISE THE LORD! They just told us the best news we've recieved the entire time we've been here. Ridge had red blood cells last night. After receiving them, his hemoglobin was at 9.5. He received platelets Tuesday night. They check those levels every 8 hours. 8 hours ago, Ridge's platelets were at around 56K. He has not received RBCs or Platelets all day. They just gave us the results of his latest blood work. His hemoglobin is 10.1!!! His platelets are 69K!!! Praise God! Keep praying! My prayer is that God is working a miracle in our son! No matter what, He IS taking us over this hump for today! And for that, and in all things, we will praise Him. Thank you for all the prayers...and THANK YOU, LORD!

this road we're on....

So it's early in the AM....about the time I'd be waking up to get ready for work here in a little over a week...man, things can change on a dime. Several weeks ago, we were holding our happy and healthy baby boy, not even having an idea what was ahead of us. Now here we are in desperation begging for a miracle. Through it all, God is good. Change is hard, and learning to live only the moment right in front of your face is difficult to do. Learning how to live with this diagnosis is something we haven't mastered even a little yet. Figuring out what to do with our precious 3 year old when it is time for him to resume daycare is something I worry about. Most likely not being able to go back to a job I love is .... I don't even know the word for it. Depressing? I love teaching. I love my students- every year- so I have no doubt that this year would have been filled with faces and personalities that I love. Not that I'd have it any other way- until my sweet baby is healthy and stable, he is who I need to spend all of my time with. But trying to figure out the finances, and if there is something I can do during evening hours to make up some of my lost paycheck, and where to put our other son since it might be difficult to keep both boys at home for a while...thoughts just overload your mind...Sometimes, life is just hard. Here is our latest update.

Ridge has been tentatively diagnosed with MLT- the ridiculously lengthy full name of it is posted in my previous blog. There is a 1% chance that is not what he has. Only 30-35 people have ever been diagnosed with this as far as we know. 30-35 people...EVER. And here we sit. This has never been diagnosed at this hospital, or even in our state, as far as I know. Our doctors are working diligently with doctors who first diagnosed this disease in 2004. We are just waiting to find the best course of management for it.

Ridge had not been allowed to eat for 2 days, and we finally got word he could eat. He has perked up a bit since then. We've had a couple of scares during his sleeping times- very low respirations, and not simultaneously, but even just now, very low heart rate. Everything else is monitoring good, but it is still worrisome. Please pray that this stops.

Before being allowed to eat, Ridge had two episodes of vomiting blood. So far, we have had only one spit up episode of blood since he's been allowed to eat....and NO throwing it up/vomiting the blood. Pray that this stays stable. He has been bleeding a lot, and his "dirty" diapers are mainly blood. This is too hard for me to look at, and I have to have someone else change him. I feel horrible for that, but it just breaks my heart to see it. Pray that there is a turnaround here.

The prayers have been overwhelming. We have people contacting us -- people we do not even know! People we don't even know are calling saying they are praying, volunteering to help out with ANYTHING...and people giving blood. OBI called me yesterday morning, and the woman I spoke to was choked up (as was I) at the response-- a long line of people...all there for Ridge. This was not at just one location, as far as I know, either. The response has amazed them- and us as well. Apparently, even the media is asking questions. Good ol' Oklahomans, helping each other out (these are the words one woman from OBI used...and she is so right).

Sidenote here- if you are donating blood, thank you. If you have donated blood for Ridge, thank you. The nature of this disease will require future transfusions, so please do not hesitate to continue to give. I will be sending out pleas again when we need transfusions. I'll probably be giving OBI a heads up too-- b/c I know the masses will continue to pour in if we need them to. I actually think it's a fairly good problem to have- there's more blood in the blood bank for EVERYONE now. If you have not donated for Ridge, right now you can probably sit on that idea and wait for the next time we need it. But I won't tell you not to give if you want to, now. So you do what you need to do.

We can feel your prayers. We have a peace that was not there a few days ago. Not that things are not still difficult...not that this is the road we would have chosen for ourselves or or son. But we can honestly tell you are praying. Definitely we want prayers for the bleeding to stop, for the drs to be wise, for the meds to work, for the heart rate to become normal, for our endurance and faith...but what we are begging God to do is work a miracle. He may not choose to work one here, but we are asking for it. We have some dear friends who have shared that even though they have tried to pray for all of the above, what God has laid on their heart is to just pray for complete and total healing for baby Ridge. That is the cry of our hearts. We are undeserving of it, but as a mother you can not help but plead for it. No matter the outcome, we will give God the praise. He is faithful, and will continue to be. We know we are in His hand. We dedicated our son to him from the moment of his birth, and I know God is holding Ridge right now through all of this, just as He is holding us. He is mighty to save, and we will give Him all glory as He carries us through this.

Keep the prayers coming.

Much love-
the carys

Tuesday, August 4, 2009

sweet baby ridge

our doctors are fairly certain the cause of ridge's problems is a rare disease called multifocal lymphangioendotheliomatosis with thrombocytopenia, or MLT. As far as they know, about 15 people in the world have this disease. All of them are children. The outcomes are not the same for all of them. The disease was discovered in 2004. There is no cure. There are some treatments, but not all of them work on everyone.

I am too tired and too sick to my stomach and too desperate to type any more right now. We are begging for your prayers. We are pleading for divine intervention and a miracle. And we are asking you to donate blood in his name if you are an Oklahoman. Any blood type can give. If you are O negative, we are asking you to designate your blood be given directly to Ridge. You are allowed to request this. All information you may need is listed in my previous blog.

baby ridge update 2

We don't know much yet. Ridge's counts have dropped again...hemoglobin was 9.9 yesterday and now is at 7.4 or so...platelets were 140K yesterday AM, 50K yesterday afternoon, and 27K this morning. Ridge has not been allowed to eat since yesterday afternoon @ 2:30. They are needing him to drink some water...this venture has been unsuccessful. Probably b/c he doesn't drink water...or at least never has before. This is really all we know. Pathology reports should be in today (uh...that's what we've heard before...but hopefully this time it is true). Everyone here has been really great, at least as far as doctors go, and most of the nurses, as well. Since I don't have a real update...I thought I would share a couple things that have been shared w/ us.

Last night, a tremendous friend came to the hospital and took me downstairs for a coke. We got to visit for a while and it was a great blessing. She shared this scripture with us. I have not had time to check the context...so forgive me here, but I wanted to share it anyway. I know it has to do w/ the sins of Jerusalem and God's restoration...at least that's what I took from the brief glance I had at the preceding and following verses.

Ezekiel 16:6
"When I passed by you and saw you squirming in your blood, I said to you while you were in your blood, 'Live!' Yes, I said to you while you were in your blood, 'Live!'"

My aunt also shared a few verses from Psalm 91 with us via text this morning. I think the entire chapter is noteworthy.
Ps. 91
"He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, 'My refuge and my fortress, my God in whom I trust!' For it is He who delivers you from the snare of the trapper and from the deadly pestilence.

He will cover you with His pinions, and under His wings you may seek refuge; His faithfulness is a shield and bulwark. You will not be afraid of the terror by night, or of the arrow that flies by day; of the pestilence that stalks in darkness, or of the destruction that lays waste at noon.

A thousand may fall at your side and ten thousanda t your right hand, but it shall nto approach you. you will only look on with your eyes nd see the recompense of the wicked. for you have made the Lord, my refuge, even the Most High, your dwelling place. No evil will befall you, nor will any plague come near your tent. For e will give His angels charge concerning you, to guard you in all your ways. THey will bear you up in their hands, that you do not strike your foot against a stone. You will tread upon the lion and cobra, the young lion and the serpent you will trample down.

Because he has loved ME, therefore Iw ill deliver him; I will set hims ecurely on high, because he has known My name. He willc all upon Me, and I will answer him; I will be with him in trouble; I will recue him and honor him. With a long life I will satisfy him and let him see my salvation."

Keep praying; Ridge just spit up blood- not vomit, not spitup, just blood. We dont' know what it means and it is taking forever for people to get the heck down here to help him. The only blood we want to see is the blood of Jesus. So, bring it, Lord.

Monday, August 3, 2009

baby ridge update 1

Yesterday Ridge had a lazy day- he wasn't very energetic. Last night we got to hear him chatter quite a bit...his little voice is so precious. They did a CBC (complete blood count) and his platelets were back down to 19K (150-300K is normal)...his orders say to do a platelet transfusion when he dropped below 20K, so that was to be coming...his hemoglobin was also low, down to 7.4 (which is not near as low as it had been, but is definitely not "normal")...so he also was to have another red blood cell transfusion. We've been moved to the 8th floor, which is not the hemotology floor....so there were some delays in getting the blood-- the draws were at 3:40 and results were requested stat...but it was about 3 hours before we got the results, and it was another 4 before they started the transfusions. Something made him sick after the transfusions- either some high blood pressure, or well...who knows? and he threw up all over Brandon in the middle of the night...due to his situation, his throw up is not..."throw up"....it contains some extra things like coagulated blood/clots...and it was most definitely brown like "old" blood looks. We have noticed some blood in his drool, which was not present before. He had only vomited one other time in his life, and it was not incredibly similar to this time. He continues to have dark stools, and we are waiting on some kind of biopsy report today...at least that is what we are hoping for.

I apologize for any rambling or randomness here, i am honestly not 100% sure of what I am writing. We are hoping for answers today, or at least hoping some things can be crossed off the list of possibilities (I don't know what things...but the drs do). It is encouraging to me that Ridge is not fussy and is basically in no pain...but it is still so hard to watch your baby go through this....and to hold him with all the cords coming from his little fat body.

The transfusions raised his counts, but this will most likely not be a permanent raise, b/c he is needing the platelets to stop the bleeding and he is needing the RBCs to replace what he is losing. He may have an MRI today to test for lesions anywhere else in his entire body, b/c they could be other places besides the stomach. Pray that is not the case, unless it would make treatment or diagnosis easier.

We know a lot of people are praying for us. We earnestly appreciate it and continue to need it. If you would like to donate blood in Ridge's name, you may do so @ any OBI or @ any OBI mobile blood drive. You will need to tell OBI that you want to donate as a credit to Ridge Cary's account.

May the God of peace bless you as He continues to use you as blessings in our lives. Thank you for everything.

Saturday, August 1, 2009

our baby

Ridge...our sweet little baby boy...well...here we sit @ Children's Hospital. Sitting. And Waiting.

Our story--
Tuesday we went to a GI specialist. Ridge had been having bloody spitup....and dark blackish brown dirty diapers....these concerns had been dismissed by our pediatrician, twice, and finally after a horrible bloody spitup incident, we were referred for a GI screen/xray. Reflux was the diagnosis...the medicine Ridge took made him scream and turn white as a ghost the first time he took it. We cut back the dosage and noticed less reaction, but were told the meds would only reduce the spitup, not reduce the blood in it. So...we stopped giving the meds, b/c spitting up itself was not a bothersome issue for us. Instead, we opted for an appt. with a GI specialist. The doctor took one look @ him and said he was anemic. He did a stool culture and immediately said, "he's bleeding inside"...the poop (sorry if it's gross) wasn't even dark, but he'd been bleeding so long there was just always blood in his poop. This dr. ordered blood work and he called us an hour later with results. The moment the phone rang, we knew it wasn't good news b/c he'd told us if Ridge was super anemic, he'd call us soon and we'd have to come in for transfusions. So...he told us that part, the part we expected. He then said Ridge had low platelets, and that's not a GI issue, so we had to come back in for more bloodwork and he referred us to Children's Hospital and to a hemotologist there. Needless to say, we were so upset/worried/scared/uncertain. The bloodwork came back the same, so we were admitted to Children's, where Ridge underwent a long time of poking and sticking in attempt to find an IV location...to no avail. Finally, later that Tues. night, ICU volunteered to put a central line in so we could begin transfusing. so...that's what we did. They put our little boy under sedation and got this line in his leg....and his first blood transfusion began. Since then, he has undergone a total of 5 red blood cell transfusions and 2 platelet transfusions, and his numbers are getting more stable. But where was the problem? We had a bone marrow test/biopsy done and it (THANK GOD) ruled out leukemia and cancer and some other diseases. He had to be sedated for that procedure. He has a nice wound on his lower back from it, as well. The following day (friday), Ridge underwent complete anesthesia and had an endoscopy done on his upper GI and lower intestinal area. The doctors found multiple lesions in his stomach-- this is the obvious cause of bleeding. This is why his hemoglobin is low- he is losing blood through these oozing sores and then he is passing it in his poop and spit up (the blood, not the sores- they are not going away). They flushed out and cleaned his stomach of all the coagulation b/c the platelets had been trying to stop the bleeding- in overdrive, basically, and that is why he had few platelets. We are waiting on the biopsy to come back from the endoscopy; this will tell us what the lesions are. The doctors are not certain at this point.

Please pray for our baby. Pray for the doctors. Pray for answers and treatment and peace. Ridge is doing well today, his counts were fairly stable. He is not bleeding at this time, but without treatment, this process will continue. There is a possibility that he could have to receive transfusions regularly, to keep his platelet counts up to keep the bleeding controlled. This could be long-term. Of course, we covet your prayers. If you want to do more, and if you are from Oklahoma, you can donate blood in Ridge Cary's name. It does not matter what blood type you are. You donate, at any OBI location, even mobile blood drives. You tell them you want your donation to be credited to Ridge Cary's name. The way it works is this: for every five units (we think )of blood donated (ANY TYPE) in Ridge's name, we are "credited" one unit of blood-- which means we get however many transfusions can come from one unit of blood, we get free. You can donate every 56 days, and it's free, and you'd be giving us something priceless...at no financial cost to yourself. Most of all-- pray. If you can do this also, we are asking you to do so. Thank you so much.
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