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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

Saturday, October 31, 2009

teaser

you won't be able to not click over here bc...well...when you do, you will see lots more of this!

Friday, October 30, 2009

quick update....

Just a quick update.  Ridge is talking up a storm, but I'm not sure how long that will last before he gets mad, so I gotta type FAST!

Okay, so our hemoglobin (okay, his hemoglobin...but it's sorta mine too, right?) has stayed at 8.6 for the last 3 blood draws.  This isn't a great number, but it is holding steady, and THAT is great.  His platelets the last 3 draws have been 91K, 75K, 101K.  I don't know if there was an error at some time or what but either way, praise the Lord! :)His O2 is still giving us a little bit of issue, but last night seemed to be better.

Last night I took Sawyer to the high school for their trick or treat event in the halls.  He got lots of candy and was the cutest 3 year old fireman ever.  He is wearing his costume to school today and hopefully to trick or treat the neighborhood tomorrow....if he doesn't get it super dirty or have any "accidents" in it at school.  I hand made it and it took a lot of silver and yellow duct tape, so I'm doubting it will wash well.  So cross your fingers that my kid stays clean today. :) pics to come of him, just not yet...the camera is at his school so his teachers can take pictures!  Anyway, it was super weird being in the high school last night.  I didn't even think about the possibility of it being weird.  But the second I hit the doors, it was just weird.  I want to be back there, with my friends and coworkers, and it was strange for a building that has felt like "home" as much as work can feel like "home" to feel so.....foreign.  We had lots of fun though, seeing some fellow teachers and some great friends, and hanging out with some of the cutest costumed kiddos ever!  Our gang consisted of a fireman, little bo peep and her lost sheep, rainbow brite, spiderman, and the cutest dr/surgeon ever!  fun times.

well...the talking has turned to griping, so I must tend to the little man.  he's going to be a chubby lion for halloween-- you won't want to miss those pictures...i promise.



Thursday, October 29, 2009

keep praying

So...Ridge is having some issues.  He's happy as can be, but the diapers seem to be headed down the wrong path again.  Spitting up has been basically zero, so that is good.  His hemoglobin is getting lower, but not terribly, and no drop from last night to this morning in hemoglobin.  The platelets are wacko....they will be in the 70s, then the 80s the next day then 90s...but last night they were 90k and this morning they were like 70 something k....last night Ridge decided he didn't want to sleep for very long bouts of time, so that was great.  However, when he was sleeping, his O2 levels were dipping down around 80-85.  90 or higher is what we want.   He was recovering on his own, but this happens sometimes when he is bleeding.  Hemoglobin counts do not really indicate a lot of bleeding going on, so some things are kind of confusing.

I spoke with the mother of a boy who has MLT as well.  He is doing well currently and she gave me some advice and suggested a med that I have referred to our resident to see what the GI team thinks of it.  I am interested in trying it since Ridge is on a decent size dose of Octreotide and since our goal is to NOT be on the steroids forever.

Ridge also had the hiccups yesterday.  I know, you're thinking, hiccups? who cares?  well...no, you aren't thinking that.  But you might be wondering why I would note this fact.  Well...Ridge hiccupped two or three bouts a day when I was pregnant with him.  He got hiccups all the time after he was born.  But after we got here and he got a diagnosis and was on meds, hiccupping stopped.  However...I noticed it's return the other day when things were going downhill.  One of the docs thinks it is a sign of the irritation from the blood.  But whatever it is, it's some sort of sign!  Not necessarily a good one, but something to notice...as is the low O2 levels...and the darker poop....etc.

So that is the update.  Pray that Ridge will start doing better and that the doctors have wisdom where to go from here and that my voice is heard bc I know I might have to get assertive about some things this week as far as Ridge's care is concerned...and not all of our doctors are as cooperative with me as others....and this is really not the week to have to change Ridge's course of treatment....but I am afraid that a change might be in order.

In other news, can I just say how stinking annoying it is when people ACT like they know what is going on with Ridge?  Not you, blog readers, but medical personnel.  I get that these people have been to school longer than I have and studied diseases and medicine and blah blah blah.  I have a respect for doctors.  But I do not have a respect for a doctor who has not even taken five minutes to read my son's chart and comes in and tries to tell ME what the deal is.  Um...I think I know better in THIS case.  Do you know how many doctors have worked w/ MLT?  I'd guess less than 20 in the world.  For SURE less than 20 hospitals have dealt with it knowingly.  So...it is not rude or arrogant to assume I know MORE about it than some of the doctors HERE.  Not more about it than our GI docs who treat Ridge daily...but possibly I know AS much.  And I have done my research.  I have now received a call from a mother who has a son with MLT, so I have a little more knowledge than I did yesterday.  All of this to say...when Ridge is dropping o2 in the night and the resident who I have never met comes in over an hour later when Ridge is awake and tells me "he's breathing fast"...well, I don't handle that well. No...he's breathing like normal for being AWAKE.  Thanks for checking him out when the problem isn't even OCCURRING.  Thanks for telling me that it is bc of his anemia.  Well, yes, he is "anemic" I guess, but do you even know WHY?  Have you read the chart?  Thanks also for telling me he might have to be transfused today. Well..no...bc his hemoglobin is above 8, and we don't transfuse till it's below 8.  Thanks for then saying, I guess to cover yourself, "well...we will have to look back at the trends and see."  no no no...I know this person has to be an intelligent, competent, even kind individual...but you have got to listen to the MOM sometimes.  I have been here three stinking months.  PLEASE do not act like you know what is going on with  my kid bc you just told me a few things that are NOT right and you also told me several things I am already aware of.  I just don't get it.  When we are finally released from here, I have a feeling it will be a battle of wills everytime we have to call an ambulance or anytime we happen to be at a different hospital than this one.  This is one of those cases where not EVERY doctor knows the best....or the most.  And I just wish people would admit it.  Or at least take five minutes to read Ridge's chart/file....I know you can read just about everything there is to find on MLT in five minutes.  So please, for everyone's sake....do it.

So that rant was brought to you by a protective momma who is somewhat sleep deprived and about to drink a LOT of coffee.  But that's how I feel today.  And I also feel like it's time for Ridge to be done with all of this.



Wednesday, October 28, 2009

update...and double duty, please!

first, an update.
1. we have too many favorite nurses here.  it's a real bummer when NONE of them are working but usually the opposite is true- MORE than one is working on the same day and this sometimes poses some difficulties-- who do we pick?!?!?!  good problem to have.  as long as you (nurses) don't get/stay mad! we love you ALL...you're like our second family.  seriously...it's becoming that way.
2. ridge is doing pretty well.  not all the way back to where he was, but getting there.  his blood counts drop about .1 per day which is fairly normal.  his platelets are dropping about 5K a day, which is kind of weird but not abnormal...but we are hoping that stops soon.
3. his broviac line (the line that goes to his chest where he receives his meds) has a small malfunction that is less than ideal. it doesn't cause it to not work or anything, it just makes this one part of the line more likely to break, which means we'd have to get a new line.  it's not so bad that they need to put a new one in now, but it is a "weak" point.  we have a nice splint made of a popsicle stick and tape....with all the technology in the world, that's what we have :)...that's what the surgeon said to use! ha.

okay that's about all of the updates, so now moving on to the "double duty" portion of this blog.
i've mentioned mckmama before in my blog.  i do not know her personally, but she is the author of a blog i follow daily.  she is an inspiration to me, as well as to many many others.  her littlest one, stellan, has a heart disorder known as SVT.  to read more about it, please check out her blog.  anyway, my request today is that as you pray for increased improvement and healing for ridge, that you would also pray for stellan.  he is in the PICU near wherever they live bc he has had an episode of SVT. pray his heart would begin functioning normally and that the Lord would bring healing and peace to him and his family, just as you pray for our family daily.  Though I do not know stellan, his momma or daddy or precious siblings, i feel somewhat linked to them in the sense of trial and prayers for endurance and faith and healing.  i don't know the road they walk personally in the exact sense, but i do understand it bc i watch my baby in the hospital day after day after day.  anyway, please double your prayers today!  their family, and ours, would appreciate it!

love to ya!


Monday, October 26, 2009

no way, not me

Okay so today is Not Me Monday...but either I am really forgetful or I was really good this week.  I've only got a couple!  To read more, check out the ever fabulous MckMama and the many Not Me Mondays posted there.
It definitely wasn't me who was so excited to finally get to go home after NOT spending 12 nights in a row in the hospital...so excited that I definitely did NOT let Sawyer stay up late watching a movie that I did NOT pick out for myself.  It wasn't me who let him stay up and watch the entire movie with me and then stay up even later to laugh and play before we finally did NOT go to sleep close to midnight.  I also did not let him watch the same Mickey Mouse Clubhouse 3 times in a row the next morning while I continued to sleep with my head buried under the covers.
I also did not make him take a 10:30 AM nap even though he naps at 1:00...I did not not not make him lay down at 10:30 just so I could get some things done and we could get to the hospital earlier than usual.  

It also definitely was not me who gave my child's blood pressure medicine super fast the other day in the hopes that he would spit it out since I didn't think his BP was worthy of getting the med.  It wasn't me.  And it SO was not me who rejoiced when the med shot out so super fast all Ridge could do was gag and spit most of it out.  I would never ever do that.


Sunday, October 25, 2009

yay for today.

Ridge had a good night last night and all his blood counts were up today.  The poop issue is trying to resolve...it isn't black anymore.  It is still dark, but not scary.  He was/is stable enough today that the doc said it was okay to go ahead with the six month shots.  They don't have any flu shots here, so we will continue to wait on that.   So...sometime today he will be getting his six month immunizations.  The steroids don't allow him to get live virus vaccines bc his immunity is down due to the steroids.  There aren't any live virus vaccines, I don't think, at 6 months...but this could pose some problems later if we choose to give any live virus vaccines...I don't know that we will/would...I'm not here to open a vaccine forum.

Anyway, I think that is about all of the updates.  Sawyer is enjoying all the Halloween candy both his grandmas have given him.  He got to stay in his jammies all day today and daddy got to go hunting.  I got to eat three donuts...and have panera bread for lunch.... and see a friend i haven't seen in awhile.  so it's all good.  OH...and...don't get jealous...i finished....yes, finished...my Christmas shopping.  for everyone.  i didn't forget anyone.  i'm not at work, so i don't get to do secret santa...so no expense there this year (sorry to any YHS teacher reading this...i think i'm a decent secret santa giver!)...unless some exchange i am unaware of creeps up...i'm done...finished...finito...whatever word goes here- the end.  

Yesterday, we had a fun little photo shoot with a friend of ours...we just went outside the hospital and played with sawyer and ridge and hung out and got some candid shots.  ridge hadn't had any pictures at all since his birth and newborn shots, which another of our friends took.  we're so lucky!  anyway, i took a few horrible shots myself before the actual photographer showed up.

hope everyone had a great weekend!

Friday, October 23, 2009

pictures

so i'm piddling around and i decided to devote the tons of pictures i post to their own little page.  so from now on, i will be photo blogging from this little address.  don't worry- if you aren't tech savvy or if you don't want to remember 2 addresses, i will let you know right here on the regular blog when i post pics.  this way, those of you who read this to keep up with the ridger don't have to look @ the pics, and those of you who don't want to read 23490745 sentences about what's going on with us can just look @ pics. and those of you who like BOTH things...well, aren't you special!??!?!?...you can just check out both pages.  Don't worry, remember, I will link to this pg....so you don't have to remember or do ANYTHING extra...unless clicking your mouse one extra time is that big of a deal. and if it is...well...then you will be missing out on some cute pictures.  at least that's what i think. :)

half of one

Happy half birthday to my second born.




Dear baby Ridge...oh how we love you.  So many of us love you.  Especially your momma and daddy.  And your big brother.  Oh Ridge...it breaks my heart that you have spent half of your six months in this hospital.  It breaks my heart that we have missed all this time at home.  I know it is but a blip on the map of time you will be with us, but it is still heart wrenching for your momma.  I should be seeing you at home, rolling over and getting ready to crawl in the house we bought just so we'd have more room for you and Sawyer to play.  I should be waking to your coos and giggles in your own bed, in the  nursery daddy and I textured and painted just for you.  Your four and five and six month pictures shouldn't consist of cords all over you and hospital beds and equipment in the background.  You don't know the difference.  You are full of life and laughter and bring joy to my heart every day.  You are capable of so many amazing things- like reaching your toes all the way to your mouth.  You squeal with delight when I lift you up over my head.  You have the beautiful brown eyes I always wanted one of my babies to have.  You look just like your daddy.  You sing beautiful songs in your own little baby language.  You don't fuss, barely ever...not even when you are at your worst, MLT-wise.  You know nothing other than life with MLT.  We are the ones who want better for you, who want "more" for you.  For you, this is no surprise, this is normal.  For us, this is heart wrenching.  This is annoying.  This is blind-siding.  I want to take the cords off and just take you home.  I know that isn't what is best for you, but it is what I want more than anything.  You are my baby, my second born, and at the first sight of you, well, after saying that you looked just like your brother, I knew immediately I would want more babies (baby?).  I thought that might change upon your diagnosis, but watching you grow and laugh and bring joy  to those around you has just made that desire for more little ones affirmed.  You are our gift from God, chosen to walk this road, and we will be beside you, sometimes even carrying you, as God carries us, every step of the way.  I love you, as your brother would say, with all my heart, all my sunshine, all the corn, all the corndogs, all the ketchup and all the mustard.  You are my sweet baby boy.  Happy first half birthday.

Thursday, October 22, 2009

nuh-uh. no WAY.

I'm going to apologize ahead of time for the fact I will probably get some of this info wrong.

I am writing this Wed. night, but have kind of felt like a blogging fool today so I will save this and post it tomorrow morning or sometime.

So today has been kind of a roller coaster.  Ridge is in this uncomfortable "parent" bed with me, bc I like having him sleep with me as much as possible up at the hospital.  sleep? i mean coo and squeal, bc that is what he is doing right now....at 9:15 pm.

OKAY so here's the point to this post.

Obviously today was good (bc of THIS).  Obviously today was bad (bc of this)...

but you won't BELIEVE this next thing i am about to tell you....


okay, so we know MLT is rare.  we haven't personally talked to anyone whose child has it.  i've read one other blog about a little girl with the disease....but seriously-- 30 or so people in the WORLD with it, the odds aren't very good that you are going to personally connect to someone who has the disease, RIGHT?  um. wrong.

so...my mom is a teacher.  her school did a blood drive for ridge (thank you WHS).  she was interviewed by the paper for an article about Ridge/the blood drive/his disease, i'm actually not sure bc i have not yet read it.  apparently, someone in the community read it and realized that her niece has a son with the same disease.  so my first thought, as i'm reading this note my mom sends me via FB about all this is, yeah right, it can NOT be the same disease.  until my mom gives further details about the child's place of diagnosis, and where the child lives now, and what this child's name is.  as i'm reading it, i'm going OH MY GOSH, I KNOW WHO SHE IS TALKING ABOUT BC MY DOCTORS HAVE SPOKEN TO THIS KID'S DOCTOR ...  um...yes.  so, and forgive me, for I believe this child's momma is going to be reading this possibly, anyway, forgive me if i mix up details, b/c i was not there firsthand...but this precious child's momma calls my parent's home and speaks with my dad...letting him know that her little one spent 6 months in the hospital and she never thought her baby would get better...but that baby did get better and has gone 4 months w/o a transfusion and is on no meds.  that baby is now 26 months old.  now all of that is hopeful enough.  but for SERIOUS?  SERIOUSLY?  there was a connection in little weatherford to this other kid who has this same stinkin' disease?  WHAT THE WHAT?  seriously?  no way.  as with all of this...no coincidence. none. God. is. goodFLIPPING AMAZING.  So thank you thank you thank you-- weatherford for doing the blood drive that led to that article and to the aunt who read the article and passed the info on to her niece who had the courage to call my parents and is hopefully now reading this blog...thank you.

what the heck else is there to say?


Wednesday, October 21, 2009

for your viewing pleasure (FYVP) vol. II

update: with the upping of the octreotide, the diapers have stayed dark, BUT our counts are coming up.  the CBC in the morning will probably make me feel either better or worse, but the one this evening was significantly higher as far as hemoglobin goes- 9.2 to 9.9.  that's a decent jump in 12 hours, esp. considering no blood was given.  so i am hoping we are on a turnaround....

i also want to show you some cutie pie pictures.

yeeesssss...he is cute


yes...he has chubby cheeks.

yeeeessss...we love each other

and we have fun together.

and we give each other some sweet kisses.

and ridge pushes me away sometimes...

but he is always this cute.




I HAVE A SUPERB HUSBAND!  so...one of my HS english teachers made a post on FB about something like a pig in a blanket.  at that point, i craved them...for the rest of the day.  i mentioned this to the dear husband of mine, and said if i were to be going home that night, I'd make pigs in a blanket for myself and sawyer.  but i am not really ready to go home yet this week, so i was going to stay at the hospital...everyone sees where this is going.  anyway, although my husband was on the way to the hospital (well, about to be...) he made a stop at the store, bought the stuff, made the pigs in a blanket and brought them to the hospital, as a surprise.  mmm...i ate almost all of them, literally.  they were good. he even brought the mustard. yes.  he is a good man.



sawyer liked them...but mainly he liked the "pig" part.  this is his plate, below.

aaaaah...what a great day.  dark poop and all.

turn around, bright eyes....

my baby needs a turnaround. i'm typing w one finger as i hold him, so forgive typos. gross alert--dont read if you are easily sicked out--the diapers are dark and starting to look clotted and smell bad....the clots would be from his stomach or gi tract...the smell always worsens as more blood is passed.  the color is still blackish brown.  his hemoglobin dropped 1 point overnight, which is a big drop compared to the last 6 weeks.  normally, he drops 1 point in a week. the dr is upping the octreotide as well as reintroducing carafate, which ridge was on before.  there is talk of increasing the steroid. ridge will have another cbc tonight, so we will see how his counts are then. i hate this- all of it. pray for baby ridge.




ps- here's a link to a cute video of ridge, but im not sure it will work....




http://www.facebook.com/video/video.php?v=162414771852&ref=nf

Tuesday, October 20, 2009

the Word today

I am not 100% sure what all I've said in my updates, so let me update a bit again.

Last week, there was a reduction in Ridge's Octreotide/Sandostatin dosage. This was a failure.  They have upped the dosage to what it WAS right before that, but I am not convinced that is enough, I think we need to "overcompensate" to fix the problem.  Ridge's diapers are basically back to black.  He is spitting up brown again.  Today when I was holding him while he napped, his O2 levels kept dropping between 80 and 90...they are supposed to stay at or above 90.  These are all not good "signs".  They, in the past, have been precursors to not so good things.  I have not visited w/ the doctor today but I will make sure to discuss all of this with her and see if we can change the game plan.  While I wait, I read this out loud to myself and to Ridge, and I want to share it with you.
Psalm 20
May the Lord answer you in the day of trouble! May the name of the God of Jacob set you securely on high! May he send you help from the sanctuary and support you from Zion!  May he remember all your meal offerings and find your burnt offering acceptable!  May He grant you your heart's desire and fulfill all your counsel!  We will sing for joy over your victory, and in the name of our God we will set up our banners.  May the Lord fulfill all your petitions.  Now I know that the Lord saves His anointed; He will answer him from His holy heaven with the saving strength of His right hand.  Some boast in chariots and some in horses, but we will boast in the name of  the Lord, our God.  They have bowed down and fallen but we have risen and stood upright.  Save, O Lord; may the King answer us in the day we call.


Okay....so I want you to sing for joy over our victory- the Lord's victory.  I want you to set up your banners in the name of our God.  I want the Lord to fulfill all of OUR petitions- OUR, meaning yours, and mine,- for Ridge.  So thank  you for the prayers. Keep them coming.  Be ready to rejoice.



Monday, October 19, 2009

for your viewing pleasure

Update for today, then pics!
Ridge is still having dark diapers and some brownish spitup.  After the blood transfusion, his counts were higher than they had been, but not as high as a transfusion usually gets him.  Tonight they did another CBC and the hemoglobin was higher, but the platelets were 43K, and they haven't been that low in awhile.  I don't want to lie here, so please know, I'm discouraged by all of this.  I want a turnaround. I don't want to be in the PICU again (and it isn't ONLY bc I want to avoid H1N1)...I just want my baby to get better.  I still know God has chosen this road for us, and for Ridge.  I don't know why, but I know He has.   But this doesn't change the fact that even though I WILL walk it, I want it to be different.  I want Ridge to be better.  I want the bleeding to completely stop.  But enough of that for now- check out some pics.

so, ridge had to get some blood last night.  it dawned on me that some of you probably don't know exactly what any of this looks like, even though you might give blood frequently, or maybe you even gave blood for ridge.  so here, let me enlighten you.

the blood runs from the bag to the line to the tube thing then into the line some more which goes into the gray and purple box which is the pump that pumps the blood through the line into ridge's central line, which is above his left nipple.  yep.  on, and the picture above on the right is upside down.  it was either see the blood upside down or the label, and you can see which way i chose.  

there it is.  someone's beautiful o negative blood was given and made ridge's most recent transfusion possible. thank you, blood donors!
this is what ridge looked like while he was getting the blood. happy happy beautiful boy.


this is what ridge looked like a few minutes ago, because he loves me....if you can't tell by the subliminal message on his shirt.
                                          

and finally, here is another picture of ridge. simply because i think he is the most beautiful baby Ridge ever.



crazydaycary

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.




I absolutely love this woman's blog. So, if you are hanging out there just needing to kill some time, go read it...but be forewarned, you might become addicted.


This week, I most certainly did not as aforementioned almost sit down in the most assuredly mildew infested hospital shower. It's scariness did not evade me since I have not been in the hospital nearly 3 months. 


I also most certainly did not keep my three year old hostage in the hospital room as to avoid getting sick at school. No way would a teacher allow her child to skip 3 days of school. nope, i didn't do that.


The biggest thing I did NOT do was eat at least 2 doughnuts every day this week. I did not not not do that. That would just be horribly unhealthy and I would never think about eating such garbage, much less on a daily basis.


Other things I most certainly did not do this week- skip brushing my 3 year old's teeth more than once- i would never forget to brush his teeth! I also did not want cereal so badly that I walked on the air mattress to get to the cereal quickly, i did not slip in this process, I did not reach for the nearest thing which was absolutely not a wicker basket. I did not fail miserably at being stabilized by a wicker basket and I did not bite the dust in the hospital room....i also do not have a huge battle wound on my left ring finger from it. and i didn't yell in pain, loudly enough for the adjacent rooms to hear.


That's it. But I know there are a lot more things I did not, and would not ever, do this past week. This wasn't as funny as it could've been, had I been keeping track all week of this stuff. Maybe I will do better next week! This was my first attempt, and I have limited material since I'm living in the hospital!





Sunday, October 18, 2009

the latest

Counts this morning: hemoglobin 8.0 and platelets 74K. Ridge's platelets stay pretty good (74K is not normal, it's low, but it's stable, and he is rarely "normal" on platelets). The magic number for needing to be transfused is a hemoglobin below 8 for us. So he may get blood today or tomorrow. We will wait and see what happens! A transfusion is scary to me b/c he doesn't have the PICC anymore and only has his central/broviac line. This means the meds have to be stopped for him to receive blood. This is scary currently bc the reduction of meds was kind of a failure and so to take him completely off the meds for a 3 or 4 hour transfusion is a step of faith....

That's all the update I have on Ridge.

I like how I've been here so long that last night as I took my shower I wasn't even grossed out and I possibly could have sat down in that shower and just rested for 30 minutes. Mind you, I did NOT sit down on the shower floor....i POSSIBLY could have sat down, that's what I said. I wasn't QUITE that comfortable yet. But I also wasn't entirely sicked out by the idea. And that, my friends, in itself, sicks me out.

Sawyer is kind of whiney, I'm not sure if it's tiredness or if he isn't feeling well. Or if he's getting as sick as the rest of us at being in this joint. Well, Ridge isn't sick of it. He probably thinks this is our home, bc he probably doesn't remember the other home!

So wherever you are today, I hope you enjoy time w/ your own family. I hope you have a great Sunday and I ask that when you stop to pray, you remember little Ridge and ask for a turnaround today. Be Blessed!

Saturday, October 17, 2009

black is not the new pink. or the new yellow. or anything. get OUTTA here.

So...the poop is still dark. We are having trouble conveying the exact right dosage of octreotide to the resident. I don't understand how we are halving the dose EVERY week, but when it was too much, it seems like it is impossible to just DOUBLE it to get it back to what it was before this fiasco. It isn't a fiasco, but the math of the situation is just annoying. Especially to a math teacher. I have the exact dosage requirements written down, b/c I am super nerdo and try to be organized and in control so I write everything down- and while some of you probably think that is so crazy...can i just say it is perfect for a situation like this?-- anyway, I have the data written down. I will definitely be laying THAT on the table tomorrow since no one has come by to see it TODAY. I know what the med dose SHOULD be...I don't get how it is so difficult to get it RIGHT. The first time, it was pharmacy's fault. I don't know whose fault it is now, but seriously....let's just get it right!
Not mad. Just frustrated. Everyone here is STILL wonderful. I just don't get what is going on with this right now. ick.

No spitups, though. Well, a few, but they have been milk/clear/baby food/ NOT brown/NOT bloody. So that is a good sign. If this poop could just lighten up. Literally.

No other real news. Ridge is getting close to being able to sit up, which is GREAT. He is still not able to roll over on his own, which is certainly a delayed milestone.

Sometime this week they will probably have an xray done to double check his bone lesion status and see if things have gotten worse. I don't think there is much knowledge on the topic of bone lesions in MLT (or of MLT in general)...so I don't know that we know, or anyone knows, what they are looking for in these lesions on the bones. They do think they are not problematic other than potential risk for fractures....but it's just kind of an anomaly upon an anomaly. guh-reat.

hope everyone had a good weekend. i will try to keep the posts coming. but right now, the little sitter-upper is fussing.


yes, i am sitting here, ready for you to give me some food.
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Sawyer got to play in the play room at the hospital this week. One day, Whitney, the volunteer, took him to the playroom and they made these "dolls". Sawyer's has on a mask. He named this "doll" Vanessa, after one of our regular nurses. The real Vanessa is much prettier than the Vanessa in this picture. :)
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pajama time!!! ridge can finally wear longsleeves b/c he doesn't have his PICC line in anymore! yay!!!
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just some pics of the boys and myself @ the hospital...from L to R: 1) a rare occaision where all of us are captured smiling! 2) the boys in their osu gear; sawyer had just banged his head on the couch when trying to get ready for a nap...thus, the bandaid. 3) i know, i look frightening, in so many ways, in this picture. however, i think it is fun of sawyer and i. ridge...well, all he wanted to do was chew on that rag that evening...so he isn't cooperating with the crazy face motif.
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Friday, October 16, 2009

more updates

So....the lowering of the octreotide...not such a good idea apparently. I thought we were seeing some negative side effects yesterday, but not 100% certain. Wed. is when they reduced it, and we had a small spitup incident that night, yesterday during the day and also this morning. Yesterday, I thought the diapers were getting some darker, but couldn't be 100% sure...and today, the dark poop was back. So, the octreotide was immediately put back up to the dosage it was on right before the reduction. Pray that this step is enough to fix it as far as the medicine goes. I do NOT want that lowering of meds to result in an active bleed....so pray pray pray!

I think that's the only real update.

Okay, so from watching Prince of Egypt 872671268534 times since we've been at the hospital, I've gotta share this with you....I will add it to the playlist.

When You Believe

Many nights we've prayed
With no proof anyone could hear
In our hearts a hopeful song
We barely understood

Now we are not afraid
Although we know there's much to fear
We were moving mountains long
Before we knew we could


There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe


In this time of fear
When prayers so often prove(s) in vain
Hope seems like the summer birds
Too swiftly flown away

Yet now I'm standing here
My heart's so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe


They don't (always happen) when you ask
(Oh)
And it's easy to give in to your fears
(Oh...Ohhhh)
But when you're blinded by your pain
Can't see your way straight throught the rain
(A small but )still resilient voice
Says (hope is very near)
(Ohhh)

There can be miracles
(Miracles)
When you believe
(Lord, when you believe)
Though hope is frail
(Though hope is frail)
It's hard to kill
(Hard to kill, Ohhh)
Who knows what miracles,you can achieve
When you believe, somehow you will(somehow,somehow, somehow)
somehow you will
You will when you believe

You will when you
You will when you believe
Just believe...in your heart
Just believe
You will when you believe


Okay, so I know WE won't perform a miracle. But man...that song...watching that movie, hearing that song. Just ... wow. I'm also not adding another song (bc my playlist website doesn't HAVE it) that a reader sent the lyrics to...it's a great one, I just had forgotten about it. "That's What Faith Can Do" (thank you, Tami O!). For those lyrics, check out my last post's comments.

Thursday, October 15, 2009

october 15th

so...updates.
1. ridge got his picc line out. he has two completely mobile arms now! woo hoo! apparently a lot of you thought getting that out would be a big ordeal, bc i have had several people mention that to me....so i will ease your mind- it was so not a big deal. the resident came in, gloved up, removed the dressing that held the picc in place, and pulled that sucker out. it was just a teeny tiny little catheter that went up his arm and curved in his chest...we're talking like a little bigger than a thread. it just looks like he has a scratch on his arm from where the line went in...i mean, no surgery was done, no instruments were used....but he can wear longsleeves now!
2. ridge had his octreotide reduced again. if he responds well to this, when it is time to reduce it again (next wed.), the next reduction will put the med. to zero micrograms/kilogram- or NO octreotide (scary?)....the steroid will be reduced this sunday and when it is reduced again NEXT sunday, it too will go to zero. so as of NEXT sunday, he will be on NO meds, if he continues to positively respond...this poses a question from you i am sure, bc it did for me-- zero meds? what? i didn't even know that was an option? well, apparently it is. I think "they" think Ridge is doing much better than some children w/ this disease (keep those prayers a comin!) so they want to try this. the octreotide has not started to damage his gall bladder yet (side effect), so if they had to go back up on the dose it wouldn't be a big deal. he really is on almost no meds at all right now. weird weird WEIRD! so anyway, if he continues on the path he seems to be on, when the meds are at zero, he will be monitored a few days and then we will be allowed to -- with a watchful eye on us, of course-- goooo hooooome. oh please please pray that things keep going well! we are so ready to go home. i'm ready to go home even if it is only for one day! for all of us to be HOME! to stay up super late and watch movies and have zero rules bc we are ALL HOME TOGETHER! that is what i want so badly.
3. new rules at the hospital are kind of discouraging. right now we are only allowed to have 2 visitors at a time which is not a big deal at all- the less people here the better b/c of flu infestation (which is the reason behind the rule)...not that we dont' love visitors, we do...but we don't love the flu and we don't want it. ridge can get vaccinated, i guess if the docs okay it, next friday. we have decided to get the h1n1 vaccine if it becomes available to us. so i will rest easier when that all happens. okay so the OTHER part of this rule is that no visitors under 12 years old are allowed. there are signs up and everything. think sawyer could pass for a 12 year old? this is insane to me, and we are just going to follow the consensus that some people came to, but i will not divulge their names or identities, anyhoooo-- sawyer isn't a visitor. he's a family member- an IMMEDIATE family member. so, he gets to stay. until someone tells us he can't. in which case i will most likely melt into a pile of tears and perhaps scream at some people bc one kid stuck in here...with a disease that is causing our family to be split up...that's hard enough. don't tell me i can't see my three year old. don't tell him he can't see his brother. i KNOW the health risks. we are going to get vaccinated. i KNOW i am not above the law/the rules. but i also know that we need each other right now. so until someone stops me....i will love on both my boys @ the same time in our 8th floor hangout at the hospital.
4. ridge is still having blood pressure issues- high. so he's on a second bp med permanently (well, for now)...this is working, it seems.
5. he's liking his baby food, still. he isn't eating very often but he is still maintaining his weight, so no worries, yet. he is getting strong and i think he is wanting to sit up. he isn't stable enough to sit up-- i mean, not related to his illness, but developmentally, not stable enough. he still isn't really rolling over, which is delayed/late...but he will get it. and he's so dang happy. smiley all the time. love him. and sawyer loves him. sawyer spent the week, so far, w/ me here @ the hospital, and he was SO good and so helpful and it was so fun to get to spend time with him. he hasn't really ever gotten to play with ridge, so this has been a great time for him to bond w/ his brother and share toys and help out. it's been super. so sawyer's sequestered in this room and we are playing w/ dinosaurs and watching prince of egypt 8 bajillion times and eating lots of free cereal (okay, so first of all, i am feeding him meals, also. and the cereal is probably included in the price of our stay here, so maybe it isn't free...but we sure are eating a lot of it!) i love that kid. which one? both.

peace out.

Monday, October 12, 2009

actually something to update!

Ridge's counts have been going down the last week as a result of several labs done in one day. They went up a little today, so we hope we are on the turn around there. In a little while, today, Ridge will have his PICC line removed (this is located in his arm and the line/catheter itself runs up towards his chest internally). This line is used when his central line clots off and his meds need to keep going somehow, and it is also used when he receives blood. Kind of a big and scary step, but the thought behind it is that the line is used so rarely, it really isn't functional right now. So, we remove it, and then in a desperate situation, a new line can be placed. In a routine blood transfusion or in an event where the central line clots off, I suppose the meds could be stopped for those 2-4 hours. scary, but also kind of exciting. They continue to reduce Ridge's medications and we aren't really seeing anything negative yet from this being done, so that is also good news.

Sawyer's small class @ school has been experiencing some flu-like symptoms, and we have thankfully avoided it. Since this is Fall Break week, we have kept him "home" (aka at the hospital) with me today to see if anyone else is absent/sick/sent home from his class today. We figure if whatever's going around can run its course through his class this week, maybe he will avoid it and in turn, so will Ridge and Brandon and myself. We will see. He has been really good up here today and it has been nice getting to actually spend some time w/ him b/c i do not see him much. Don't get me wrong- I could NOT do this daily, and I am SO SO SO appreciative that he has somewhere he can go and play and learn every day. But I am also very glad to get to spend the day with him today. And I am also very passionate about avoiding the flu/h1n1/whatever at all costs. I won't start the vaccine debate, I have no idea how I feel about the h1n1 vaccine and we are so on the fence about whether or not we will be getting it....probably not. of course tomorrow i might say we will. we DID get the regular flu shot, and i am all for that. enough of that discussion.

Thank goodness for the internet...my Christmas shopping for Sawyer is halfway finished, as is Brandon's shopping for me, since I picked out my own gift and showed him the website for him to order it. :) Ridge is a toss up b/c I have no idea what to get him. He really doesn't need anything, and it's too soon to know what size clothes to get him, even though he doesn't need clothes. So...maybe I will get him a lot of diapers and baby food. Who knows? For everyone else, there's giftcards. No surprises this year, folks. Even if we are home, I sure don't think I will feel confident enough to get out there and shop w/ Ridge in tow. So I don't feel too behind. Just a little...normally I'm finished by about now, but it's okay....yay for the internet.

The little one is waking up (i've been blogging with BOTH children asleep!) so I better tend to him.

love to you all!

Thursday, October 8, 2009

brain is fried!!!

i couldn't even remember my password to get on here to blog! sheesh!  but here i am.  short and to the point- not much change, but that's good.  Ridge is doing well, having some issues w/ potassium and sodium levels being low.  has to do w/ the meds.  they can give meds to fix them, but those will fix THOSE problems and then cause other ones, so we are just figuring stuff out.  nothing to be alarmed about.  i'm home w/ sawyer tonight. did laundry and cleaned my house fast and furiously.  now i'm exhausted and going to go to bed!  

no real update on the kiddo(s), though.  however, one of our faithful blog followers did bring us a surprise today @ the hospital-- a BEACH!  palm trees with leaves full of scripture and even some waves with a surfer!  thanks, will! :)  sawyer hasn't seen it yet, but i know he will LOVE it-- i know you didn't do it for him necessarily, but i know he will think it's so cool! anyway- super thoughtful- so thanks again! :)

okay i'm signing off and hoping for a night full of sleep- 100%, the entire 8 hours.

goodnight!

Monday, October 5, 2009

forgive me

So...it's been awhile since I've actually blogged something about Ridge, as far as details go. There are several reasons for that. One being that Ridge hasn't had a ton of change in awhile. Another being that I am really getting sick of being in the hospital even though I know it's where we need to be and so sometimes I just don't even want to talk about or think about or type about any of this. I know that sounds negative. I don't mean to sound that way, but I'm reaching a breaking point and I need a second, third, fourth, one hundredth wind. Everyone here is superb, excellent, happy, encouraging, friendly, etc...it isn't the people. It's the place. I want OUR HOME, with Brandon, Sawyer, myself, AND Ridge. period. That's what I want.

I have a lot going on right now...so this blog might be sporadic but I hope it is also encouraging.
First, an update on Ridge since I know that is what you came here looking for most likely. He is now eating rice cereal, green beans, peas, squash, and carrots. He likes all of it. He is jabbering and smiling and being so sweet almost all of the time. He is still not really rolling over, so pray that we would begin to progress there. I know he is approaching the crawling age, and he isn't really acting like he wants to do that or sit up or anything at all. So pray that we would stay as on track as possible- I know that isn't a big deal...but as a mom, it is. It just is. It isn't the biggest deal right now, but I don't want this to hinder him in any way. This, being the disease. "The Disease." ugh. I think he is teething. Drool drool...everywhere. He also loves to chew and bite on...anything. They are reducing his steroids on Sundays and his Octreotide on Wednesdays, trying to get to the lowest dose of each possible. Pray that this continues to be successful, bc there is always the risk that he will start bleeding again as they reduce these meds since they are supposedly what is keeping the bleeding at bay. Pray that the Lord will continue to stop the bleeding, supernaturally, miraculously. I think that's about it for the Ridge update. If I think of something else I will post it at the end of this post.

What else...Sawyer is having more potty accidents at school and home, and I know this is related to all that is going on. Pray for him. Pray for peace in his little life and for a new sense of normal to overtake him.

Oh, Ridge is also now on a dieuretic (i know I spelled that wrong)- to try to get some extra fluids off of him so that he doesn't have so high of blood pressure and so that some of the puffiness from the steroids goes down.

Brandon's still working and has thankfully avoided the flu plague that is overtaking our schools. ick. His grandpa was hospitalized last week with serious heart issues- major blockage to the one artery that hadn't already been bi-passed. Risky business putting a stint in, but it was better than the alternative to NOT putting the stint in. Thankfully, everything went off w/o a hitch, as far as I am aware, and PaPa should be able to go home sometime this week. You'd never know this man had any heart issues-- PaPa plays on the floor with Sawyer and Ridge and seems as spry as can be with the kids! So we are so glad the procedure went well.

WISH week was last week @ the HS and in the community of Yukon. I don't know final results but I have heard a few things, and I know we are going to be floored when we find out what the community and the schools have done for us. I can't say it enough- we love love love you, Yukon.

Okay, so outside of all of this, well, sort of, I am still a person. This incident, this time in my life, is what seems to be defining me right now. Understandably. But it is not all that is going on. So I'm gonna share with you some things that aren't just about MLT and it's toll on the Carys right now. I have small faith. I have knee jerk reactions that are human and that hinder my faith. So so stupid. Yesterday we had a great time at church and I can't remember everything that was said that was so valuable in the moment (sorry, Keith-- you know Sawyer...) but it was a great time. I have so much I want to share, but I am trying to keep Ridge entertained, and so I have a few things that can speak volumes over my words. One, is a song I had in my head when I woke up this morning. Thank the Lord for it, that's what I have to say. Here are the lyrics, and if I can get a minute, I'll add it to the playlist if I can find it.

"Only Grace” by Matthew West
From the album “History”

There is no guilt here
There is no shame
No pointing fingers
There is no blame
What happened yesterday…has disappeared
The dirt has washed away
And now it's clear

There's only grace
There's only love
There's only mercy and believe me it's enough
Your sins are gone
Without a trace
And there's nothing left now
There's only grace

You're starting over now
Under the sun
You're stepping forward now
A new life has begun
Your new life has begun

An’ there's only grace
There's only love
There's only mercy and believe me…it's enough
Your sins are gone
Without a trace
And there's nothing left now
There's only grace…

And if you should fall again
Get back up, get back up
Reach out and take my hand
Get back up, get back up
Get back up again
Ohh…get…back…up…again…


There's only grace…
There's only love…
There's only mercy and believe me it's enough…it’s enough
Your sins are gone
Without a trace
And there's nothing left now
There's only…there’s only…grace…

There's only mercy and believe me it's enough…it’s enough
Your sins are gone
Without a trace
And there's nothing left now
There’s only…grace……
So get back up…get back up again…
Get back up again.

Okay...so...good stuff. Needed that. So did some of you.

Then, there's this.

Psalm 5

Give ear to my words, O Lord, Consider my groaning. Heed the sound of my cry for help, my King and my God, for to You I pray. In the morning, O Lord, You will hear my voice; In the morning I will order my prayer to You and eagerly watch. For you are not a God who takes pleasure in wickedness; no evil dwells with You. The boastful shall not stand before Your eyes; You hate all who do iniquity. You destroy those who speak falsehood; The Lord abhors the man of bloodshed and deceit. But as for me, by Your abundant lovingkindness I will enter Your house, at Your holy temple I will bow in reverence for You. O Lord, lead me in Your righteousness because of my foes; Make Your way straight before me. There is nothing reliable in what they say; their inward part is destruction itself. Their throat is an open grave; they flatter with their tongue. Hold them guilty, O God; by their own devices let them fall! In the multitude of their transgressions thrust them out, for they are rebellious against You. But let all who take refuge in You be glad, let them ever sing for joy; and may you shelter them, that those who love Your name may exult in You. For it is You who blesses the righteous man, O Lord, You surround him with favor as with a shield.


God, forgive me, forgive us, of our iniquities. Remind us today that it is only by Your grace that we are pardoned. And that...that is enough.

Thursday, October 1, 2009

cake auction

www.yukoncc.com links you to the wish week cake auction. click on "place bid" to see the cakes; you don't have to bid to look, but anyone is allowed to bid! bidding closes at 4 pm today. i can not believe how gracious people are....God is great!
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