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


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

Friday, September 24, 2010

what a week.




i don't know how to describe the last 17 months of our life.


i don't know for sure how to describe the last week of our life.


but....deep breath.


for a week....we have been home.


for a week....ridge's hemoglobin has not just been stable, it has been GOOD.


for a week...ridge's diapers have ALL looked normal.


for a week....ridge has been able to crawl around and walk around (sort of) on the floor....because we are home. because my home is clean- for sure cleaner than the hospital.


for a week...sawyer has been able to play in his room, sleep in his bed, do school at our kitchen table, and wake us up every night bc he is scared in his room. and i wouldn't trade it for the world, because we are home.




this week, we went to the zoo. if we are still home next week, we will go again. it is free, thanks to gibby who buys the boys a zoo pass for Christmas every year...and i will not find other things to do when i can do something with my kids...because sometimes, i can't do things with my kids.


is this disease behind us? i don't know. i have cautious optimism. but God is good. and we have had "normal" for a week.


here's where ridge is at:


we had two check ups this week. at our GI check up, here are some things we discussed:
1. ridge now weighs 22.5 lbs. this is 10.2 kilos, approx. for months straight he weighed 8 kilos. his weight, for the first time, is finally on the growth chart (not that this matters, but still!)
2. ridge is 29.25 inches long. a few weeks ago, he was 28.75 inches long. he continues to grow.
3. ridge eats more than sawyer could even dream of eating....we didn't find this out at the dr, but i just thought of telling you that.
4. we were able to reduce the medicine ridge gets at 9 am and 9 pm to just the 9 am dose. this medicine is called carafate, and when we go back in a couple of months, i will ask to come off of that as well, hopefully. so now ridge gets one medicine at 9 am, one at 11 am, 4 at 5 pm, 1 at 11 pm, and 1 at 5 am.
5. ridge is currently on the highest dose of amicar allowed for his weight. this is the medicine he gets 4x a day, and it is what is majorly controlling his bleeding. with the high dose he is now on, we had to get a new bottle of it today. the bottle of it is huge. it was also incredibly expensive. and that was with our insurance covering about 85% of it. the full price on it...between 500-600 bucks. ridiculous. we are STILL, 10 months later, waiting for approval for some medicaid type secondary insurance. it is taking forever. everyone assures us ridge qualifies-- aside from the fact we fall in that dreaded "middle ground" of income-- we have been assured he qualifies bc of his medical need. that's great. but it would be even greater if we could get the ball rolling before we don't need the help anymore....but i'm rambling.
6. the doctor wants to scope ridge again sometime. i didn't say a whole lot in the appt about this, but brandon and i have collectively decided we don't like that idea. what's the point?
7. ridge's spleen measured small awhile back. he will go for an ultrasound in october to see if that problem is worse or better.
8. the GI doctor, although he isn't the expert on this, doesn't think we need to stress dose steroids anymore. this means when ridge is sick, we shouldn't have to do steroids. his thought is we only need that now for bleeding, and then only when the bleed doesnt' stop on it's own. i like that opinion, i just don't know if it's for sure the opinion the endocrinology team would have.


i think that covers our GI visit.


later in the week he had a pentamidine infusion on the hematology/oncology floor....here's that visit.
1. a dental student was working that day and he looked at ridge's 12 teeth and said they looked good. this was good news to me bc i thought one looked rotten.
2. the hematologist thought he looked so so so good. and she thought soon we'd be able to stop doing the pentamidine. this is an iv treatment to ward off pneumasistis pneumonia (medical friends, spell it right, bc i don't know what it's called really). this is a type of pneumonia that immuno suppressed kids are susceptible to, and it is very dangerous.






i think that's it for ridge.


this week sawyer and i made cornstarch clay for our craft project for school. it turned out stupid and awful. but we had fun.
sawyer is a great helper- he helps with ridge, loves on ridge, sorts laundry for me and can even fold towels. he also apologized to me this week of his own volition with zero prompting or prodding from me. i am very proud of him.
sawyer also went to children's choir at our church last sunday night. i am hoping we can go back this sunday. he was pretty stand off-ish and shy but i think that will get better. i stayed to help him out but it turned out great for me bc i got to visit with the two teachers and i say you can never have too many friends. i also got to see several lovely people from our church, some of whom i haven't seen in a while.


in other news....


we are starting cloth diapering. so far, i really like it. ridge poops quite a bit, like 3-5 times a day so that's not fun, but it isn't awful. and they are the cutest diapers you've ever seen (fuzzibunz!) they are so soft and wash up so nicely and the stains always come out. they are one size adjustable diapers, so if we ever have another baby, i can use them on him or her too! we haven't had to buy many diapers for ridge bc we are always in the hospital, but while cloth diapers ARE expensive, if you add it up, they really save a TON of money in the long haul bc I easily spent over $500 a year on disposable diapers-- for two years, and then at least half of that for another year with sawyer. so we're talking probably $1500-$2000 on disposables and pull ups in the first 4 years of sawyer's life. you could buy all the cloth diapers you need for less than $400. and that's going with the brand i chose, which isn't the cheapest one out there, but isn't the most expensive either. AND you can use them for more than one child, so that makes them even more economical. bdawg hasn't come around to it yet. but i like them.


since being a stay at home or stay at the hospital mom, i have become more passionate about those types of things. i have time now (not that i was w/o excuse before, bc i should've been just as responsible when i worked)...and do i really have time now anyway? no i'm still busy-- but anyway- i have time in my brain to be more earth friendly. while cloth diapering saves a lot of money, it is obviously better for the environment bc my kid's poop and pee isn't soaking into some landfill somewhere. i have lots of things like this to share, but for a reason i can't yet disclose, i will not say anymore.


I am reading Dr. Sear's "The Vaccine Book"-- it is so so good. Don't worry- it doesn't take a stance on "Vaccinate/Don't Vaccinate"-- it really is unbiased and just explains every vaccine your child receives in the first 5 or so years of life. It's easy to read and it isn't too expensive either ($9 online at walmart). I think anyone with kids who still have vaccines coming should read it...and anyone who's pregnant or a new mom should too. I wish I'd have known some of that stuff with Sawyer.


This is kind of big news, and I'm not sure if I am ready to share it anyway. But I will. Something you can be praying about for us-- I have been told, repeatedly, that I should write our story....like, write a book. I have the blog. It's enough for me, I never had a desire to write a book. This is a great way to journal my feelings and I'm fine with it. But lately, I've really had an urging to write a book. I don't know if i WANT to, I just am really feeling compelled in that direction. I can't share a lot, bc I'm not the only one involved in this decision....but I think I have a good idea about the book. So please be praying for direction, clarity, provision, open doors, all of that. I don't want to move forward unless it is truly God's will.


i have so many things i want to share, but the boys and bdawg are home with dinner, so i will go for now! i want to leave you with a song my friend kelly shared with me....





and i'm heading to the photoblog to update it as well.

Tuesday, September 21, 2010

my friends

It isn't released yet, but some of you may have heard it.  if you haven't, head on over to youtube and search for it...Matthew West's "Strong Enough".  Story of the Cary's life, and probably some of yours?  I think so.

actually, i will post a youtube video of it...but keep in mind other than the song is the song of our life right now....the video itself has nothing to do with us/i don't know the child at the end/etc...



It may be on itunes, but my itunes is acting up so I haven't had a chance to check.

Thanks, Amy, for reminding me of this song....it's a perfect fit.

Sunday, September 12, 2010

is my head on straight?

forgive me if any of this is a repeat of anything i've told you before. i have a lot to share, this will probably be a long post, so if you don't have time to read it, there's your heads up, my disclaimer, whatever-- you might need to come back later if you have more important things to be doing!  sorry for the novel i'm about to post.

ooook. first thing: update.

we went to the hospital a week ago.  ridge was bleeding, randomly.  that hasn't happened in a while.  so we were still on abx for his central line infection (did i tell you he had one of those? if not, i'm telling you now).  so we gave him blood on sunday and we waited.  i knew on saturday when we'd gone home that it would be a short stay home, and it was very short indeed.  but ridge responded really well to the sunday transfusion and by tuesday he was pretty much holding his hgb well and acting fine so i said we needed to go home wednesday if possible since he was doing well, and the doc agreed.  so wed morning, we gave blood even though ridge didn't really need a transfusion....just tanked him up.  and we came home.  but i'm getting ahead of myself.

monday night in the hospital...well, maybe it was tuesday morning, whatever..it was 4:30 AM i believe on tuesday.  ridge had something...a med, that's what it was.  he kind of woke up bc he hadn't really woken up all night to eat, so i got him out of the bed (HALLELUJAH he was sleeping in the bed without me!) and sat in the rocker to feed him (yes...still).  i was rocking him and he had finished eating and i wasn't really thinking about a lot, which was strange bc usually at that time of night/morning if i am awake i am often praying a billion times in a row, "Lord, say ENOUGH.  Let it be over. please heal ridge, or just let us be done with this and let us be normal..." blah blah, you get my repetitive nature of praying....but i wasn't doing that. i wasn't really praying or anything...i was just sitting there.  and i leaned down and kissed ridge on the forehead and i heard, "It's over."  I didn't hear it outloud, but I heard it clear as day.  More than once.  I don't want to get ahead of myself, and as a friend mentioned, I am optimistic, but cautiously optimistic...but I do not doubt for a second I heard that.  What does it mean?  Did that phrase mean IT is over?  Or that THAT bleed was over?  Or what? I have no idea.  But I know I heard it.  I'll let you decide who you think said it, but I know who I think said it.  Repeatedly.  Soooo....Wed. we came home.  Ridge finished the IV abx on Friday.  We are still on a higher dose of amicar but we are going to slowly go back down starting late tonight.  And when we first came home I had this horrible feeling that a stomach bug was headed our way, but so far, we are clean on that. I am beginning to fear the flu, so S-Puppy and I will be getting our flu shots this week if possible (um, the health department doesnt have them yet, but informed me they would not be free this year...what?) so we will just go to Walgreens or Target or somewhere that already has them.  In fact, tonight I went to target, and planned on getting my flu shot.  The pharmacy was already closed.  But while I was there, and afterwards while I drove to starbucks and over to my SIL's new house, which I had not seen before tonight but really liked a lot, I just felt...normal.  Like, no cloud over my head.  Like, I haven't felt that way in a year.  I don't know what it means, and I am still being cautiously optimistic....I have shaky sea legs of faith right now...but I feel normal.  I am not bold in anything about this journey so I will not say more....and I know I could be wrong about it all...and I know more trials could await us....so I am cautious.  But deep in my heart, I feel something different stirring.

Speaking of my heart...I am reading a book...that is to be taken very loosely-- "reading"....I don't have a lot of reading time.  But when I DO have time, I am reading "When Your World Falls Apart" by David Jeremiah.  And if I could kiss a chapter, I'd be kissing chapter 4 right now.  And I could type out all of the chapter I've read so far bc all of it is golden to me.  But I will try to share an abridged version.  Many a tear have been shed this chapter, and I'm only halfway through it.

The chapter is on Psalm 13.  I will include the entire psalm here....all emphasis is my own.

Psalm 13,  a Psalm of David

How long, O Lord?  Will You forget me forever?  How long will You hide Your face from me?  How long shall I take counsel in my soul, having sorrow in my heart DAILY?  How long will my enemy be exalted over me?!?!?!  Consider and hear me, O Lord my God; Enlighten my eyes, lest I sleep the sleep of death; Lest my enemy say, "I have prevailed against him"; Lest those who trouble me rejoice when I am moved.  But I have trusted in Your MERCY; My heart shall rejoice in Your SALVATION.  I will sing to the Lord, BECAUSE HE HAS DEALT BOUNTIFULLY WITH ME.


Do I feel like, really, in the pit of my soul, that the Lord has dealt bountifully with me?  HECK NO.  I don't think this crapwad disease is bountiful in the least...not in any good way anyways.  But do I BELIEVE the Lord has dealt bountifully with me?  You bet I do. I read that part of the chapter as a promise.  My God will deal bountifully with me.  He will preserve me.

I'm not finished.

So David was really having a sucky time...Saul was hating him, out to get him, David was on the run, even acting insane and stuff.  Check it...from the book:

"In every life, at some time, a person finds himself in that dark tunnel where no light is visible.  You weep and you cry out in frustration and you plead "Lord I can't take anymore!  I have no more patience and no more strength to hold out; I must hear from you TODAY.  If you don't resolve this issue, I don't know what I'm going to do.  Can't You see that I'm desperate?  WHY DON'T YOU HELP ME?"  (ahhem...I could have written that.  I've probably said those exact words.  Possibly verbatim.)

more more more...
but "THere are some favors that the Almighty does not grant either the first, or the second, or the third time you ask Him, because He wished you to pray for a long time and often He wills this delay to keep you in a state of humility-- and to make you realize the VALUE OF HIS GRACE."  -- Jean Eudes.

Thank you very much.  For sure I understand THAT quote.

Here we get to the most recent stuff I've read...and it's some good stinkin stuff.

FB Meyer (biblical commentator): "Saul's persecutions lasted for EIGHT OR NINE YEARS, and NO hope of termination appeared.  David was a man who spends FIVE HUNDRED DAYS passing through a forest.  The tangled over growth hides the sun, and he begins to despair of EVER emerging."

David...david david...he wrote psalm 13 when "he was physically ehausted....emotionally depressed...dispirited, discouraged.....this psalm was wrung out of the extremity of his soul....he could NOT go on...not for another day, not for another hour, NOT EVEN FOR ANOTHER MINUTE."

I've been there.  It is an experience I hate and it is something I might have thought I'd felt before but hadn't.  It is a feeling, a literal feeling, of "I'm going to lose it.  I can not take one more thing.  I will crumble.  I will fall apart.  I will have a nervous/mental/whatever breakdown."  It is a feeling of complete despair and insanity that I just haven't ever felt until all of this with Ridge.  And I don't feel it all the time, but I feel it when things are just way way way TOO MUCH.  It isn't something any person can help.  It is an internal emotional struggle of needing things to just STOP and things to BE OVER....

David felt that way.  repeatedly.  there are many many psalms like that one.  "So many begin with a sigh and end with a song.  But in life, you can't take the song without letting out the sigh" (from the book).

HOW LONG?!?!?  "[david] is overwhelmed with a sense of PERMANENCE of trouble....trouble....with no solution,[seeming] to mock our most diligent efforts to lead a peaceful life, and finally [consuming] our last ounce of patience. And David...finally lifts his eyes to heaven in exasperation and says, 'HOW MUCH LONGER, O GOD? HOW MUCH LONGER?"

The book also talks about the fact that we will come to a point..we WILL come to a point of believing that God's forgotten us.  If you haven't been there, good for you.  I might've felt ignored by God before, or like I was separate from Him before...but many many of those times it was because I wasn't seeking him really.  I've felt alone before even when I was pursuing a faithful walk with the Lord...but never have I felt so forgotten as in this valley of our life.

"It is not under the sharpest, but the longest trials, that we are most in danger of fainting."-- Andrew Fuller

Thanks, Mr. Fuller...fo sho you are right.  aaaamen amen amen.

David Jeremiah writes "We can take a certain amount with our faith intact.  But the longer we go without God's peace and perspective in the midst of bad times, the more our faith begins to weaken."

Do you get it?  It isn't that we aren't praying. It isn't that we aren't seeking the Lord...we can do everything right but you still reach a point in a crapwad time like this that your faith is just weak.  It might be all you have to hold on to, but it's as weak as I am tall.  and if you don't know me, I'm just under 6'0.

Take Job...David J writes, "Times didn't improve for him.  [IN FACT!] The devil extended his lease on Job's life, and the suffering servant of God began to realize that he was in for a long term battle.  That's when he began to come apart at the seams."

We will probably all have a time in our life where our faith begins to "unravel."  Maybe you've been there. Maybe you think you have, but God will show you something later in life where you think (most) everything before it is small potatoes compared....That's what happened to us.  "A trial will build to a crescendo in your life....life will not cooperate....days to weeks, weeks to months, ...months to years, you reach that personal point, somewhere in the scheme of your suffering where you begin to give up on God."

deep breath.

Isaiah 49:15-16
"Can a woman forget her nursing child, and not have compassion on the son of her womb?  Surely they may forget, YET I WILL NOT FORGET YOU. SEE, I HAVE INSCRIBED YOU on the palms of My hands; your walls are continually before Me."

What what?!?!?  Let's all take a break to do a dance at that.  Thank you JESUS.  Is my name on the palm of his hand?  I don't know, I didn't do the research/background whatever on this.  That isn't what the verse says.  It doesn't say I've inscribed your name on the palms of my hand.  That alone would be cool.  But it says I HAVE INSCRIBED YOU!  YOU YOU YOU!  ME.  me.  all of me.  my doubts and failures and hardships and ridge's stupid disease and our abnormal life and every pain and tear and struggle and whatever that we face and the fact i had smores for dinner because i didn't feel like having something else and the fact i stay up all hours of the night bc i just can't get to sleep bc i'd rather be doing things and staying busy and  the fact i have things about me that are just me and some people don't like them and others love them and all my insecurities and weirdness and whatever-- ALL OF THAT IS PART OF ME!  And I am inscribed on HIS hand.  He wont' forget me.  Not for one second.

"He cannot forget you.  No matter what...you have never left God's mind or heart."

I'm almost finished.

Check it check it...Psalm 22 is also a psalm of David.  But it has no historic origin traceable to his life....it is known as a Messianic psalm....predicting of the crucifixion...and in this psalm, we read the words, "My God, My God, why have You forsaken Me?"

So of course I've felt that way.  David did too.  David Jeremiah did too.  You probably have too.  Who else felt that way?  Jesus.  "The Lord Jesus Christ not only felt forsake, HE WAS FORSAKEN."  Hold up.  HE WAS FORSAKEN.  "The Father turned His back on Jesus because He was a holy and just God who COULD NOT look upon the sin that Jesus carried to the cross-- YOUR SIN AND MINE."  thankyouthankyouthankyouJesus.

"He turned His back upon His Son so that He would never have to turn His back on you."

Forgive me for all the quoting of my wonderful book, but I think pretty much all of this post is something worth sticking in our pipes and smoking.  I don't smoke.  But that's good stuff I wrote about tonight, I don't care who ya are!

I will sign off bc you are probably asleep from reading so much of my blabber tonight...if you are even still reading.

YOU are written on the palms of HIS hands.

How does that make you feel, peeps?

Sunday, September 5, 2010

updownupdoooownupppppdownnnnnnnnnnnnnnnnnnnn.....

wellllll...here we are again.  we went home saturday at about 5 pm.....and came back sunday at lunch time.
i don't know why ridge is bleeding.  i guess because he has MLT.  but i don't know what is setting this bleed off. I know he can have random bleeds, but it just seems that usually there is a stress on his body that triggers it.
His central line infection is still being treated.
He did have a runny nose issue, that has subsided. I am not sure what was wrong with him there, bc they did an FA-6 to see if it could be one of six different respiratory issues (including RSV), and everything came back negative.  So he picked up some little runny nose somewhere and passed it on to the rest of us.  Mine is almost gone...Brandon should be over it by tomorrow or Tuesday and Sawyer will follow suit on Wed. or so.

Ridge's hemoglobin yesterday morning at the hospital was 9.1, from 9.8 the night before.  So blood was given, boosting him to 11.4.  This was not a huge jump considering the amt of blood he was given.  It is a GOOD jump, but if he weren't bleeding, he would have gone up to around 13...which is way high for him and i dont' really care if he is that high or not.  Anyway, I just knew when I heard "11.4" that things weren't going to go well.  But we went home...and Ridge looked pale.  he wasn't having any diapers so there was no judging the hgb by the output....So we checked his blood at home this morning and got 11.4....which probably meant he was in the 10s, bc our montior is a little off usually.  So....I wanted to check it later since he had had one darker diaper today.  Brandon checked it a couple hours later and Ridge was down to 10.1.  Which meant he'd dropped a gram or so in those couple of hours. So Brandon brought Ridge to the ER while I got Sawyer and myself ready.  When the ER took Ridge's CBC, the lab results were hemoglobin of 8.7.  So he'd dropped again.  So blood was ordered, and began within an hour and a half of the CBC, which never happens.  Props to our ER resident, who is familiar with our case and expedited things for us.  And props to the 8th floor nurses who helped it get going quickly as well...and who sanitized our room bc they know that's how I roll.  They go above and beyond.  Love those nurses!  And (most of) those residents!  So Ridge's blood is almost done. In a few hours we will know how much he was boosted...

He acts good....it is just strange.

No other news...just updating you on what's up.  We are tired of the back and forth.  I am afraid this fall and winter will be full of it, bc illness makes Ridge bleed and Sept begins the sick season....Spring can not get here soon enough....even though, normally, I love fall and winter.  Until MLT is behind us, my fan status of the colder seasons is going to be on pause.

Nothing further....

Alisha

Friday, September 3, 2010

recap

here are the stats:
ridge came in the hospital last sunday.  he had a small fever.
line cultures were drawn.  LINE. we only have one now.
antibiotics were started.
fever was gone before he even got to the hospital.
he had a runny/stuffy nose.
he still has that. it is progressively getting worse.  so he has some sort of virus is the consensus as far as snot goes.
his central line is infected. first it was determined to be gram negative rod bacteria.  so we stopped one antibiotic.  then it was discovered to be gram positive rod bacteria. so we had to start that antibiotic BACK, which is like starting over.  so we are treating the infection.
he got blood on monday.  he was bleeding bc of the infection.
he hasn't needed blood since then.
the snot is getting the best of him and his stools are darkening up due to that runny nose.
so we will get blood again today or tomorrow.
he is also getting a chest xray bc the runny nose could lead to pneumonia in ridge.
doesn't everyone hate it when their kid gets sick?
i extra hate it.

that's the low down.
my opinion?  ridge will still get sick.  sometimes it will be avoidable. other times it will not.

while it would be scary to have no lines at all, bc he does need blood frequently....he would not bleed due to line infections anymore.
so my vote is to go without lines for a trial period.
the doctor isn't on board...yet.  he isn't totally against it either.

ridge can now say 2 words. he can say momma.  and he can say NO.  i think.


he also gets wrist swats sometimes. and it breaks his heart and he sticks his lip out.

ridge will go home this weekend if he isn't still bleeding.

i think that's all. how'd you love this exhilarating, interesting post?
There was an error in this gadget