what's going on

So today is Sunday. Halloween.  I think it's been at least a week since I updated, and it bothers me I am so bad at blogging nowadays. Sorry.

Last weekend I went to see my college girlfriends for a mega baby shower.

Here they are...my sweet sister friends:

\

two babies in their mother's arms, and two babies in their momma's bellies...and contrary to the appearance of this photo, there is NOT a baby in MY belly.  suck it in, alisha.

We had so much fun and it was sad to leave, because it is a rare sweet treat to see one another.  We were sans one other friend who was on her way back from afghanistan....so while it was a great time together, we wish Lu could've been there too!

Saturday while I was gone, Ridge started bleeding and had to go back to the hospital.  We didn't know why he was bleeding, other than he was still cutting some teeth.  So he got blood a couple times, the bleeding stopped Tuesday, and we went home. Tuesday in the night, he spiked a fever of 101-102.  So we had to take him in  (anything over 100.5 warrants an ER visit for US, because Ridge has a central line and it is always assumed fever means line infection.)  Line cultures were drawn, peripheral cultures (IV stick) were drawn...blood was given...tylenol was given....and we just waited it out.  He didn't seem to have any infection, there was no growth on any of the cultures.  But...being there this week meant we missed out on some of the fall festivities in the community.  Thankfully...we are always at CHILDREN'S hospital...so the $$ i spent on costumes this year did not go to (as much) waste.    Friday the hospital had a party (Sawyer didn't want to go...so we didn't)...and they had trick or treating in the halls...the kids both donned their costumes (one wasn't as willing as the other....) and we got lots of goodies (not so much candy bc they didn't really hand out candy at the hospital)....all in all, it was a good time.

Saturday, I had some errands to run, so Sawyer tagged along.  First stop: EARLY VOTING! I didn't know you could do that until this last year or so!  Much less stress (um, last presidential election I went on my planning period to vote and it ended up taking me THREE HOURS to get through the line!)...however, it meant I had to go to El Reno for this general election (early voting has to be done @ the county election board)....it just so happened, El Reno's trick or treat through the businesses was that day (I don't know the technical name, sorry!)...so when I got Sawyer out of the car, he said, "WOW mom this is gonna be FUN!" Sorry, kiddo, THAT isn't what we're downtown for :( .  But I got my vote on, and we headed to finish up our errands.  While all of this took place, Ridge was getting blood and getting cleared to go home.  He developed a rash during the transfusion.  It was assumed to be a reaction.  Benadryl was given. He seemed fine.

So last night, we were all home, and we went trick or treating!  First time for both of the boys!

Buzz Lightyear...and an alien from Toy Story.  See those two pumpkins? there is a third one on the ground by the bench.  Stupid me left them out last night, and after trick or treating, only one of the three remained. Dumb kids, stealing my pumpkins. 

So this morning, Ridge still had the rash.  He feels fine, is afebrile (no fever), so the rash was just....annoying (to us, not him).  So I got my research on (bc I think parents need to be involved in their kids' health-- I will never again take at face value what a doctor tells me WITHOUT first and second doing research myself.  I don't think this is OCD or weird, I think this is GOOD PARENTING.  Doctors can be wrong.  Doctors can be at a loss sometimes.  It's okay if I research something, ask about it, and am wrong/get laughed at/people think I'm weird. Because sometimes....like today...I might've been weird, but I AM RIGHT!)  I thought Ridge probably had Fifth Disease.  It's just a virus, in the same type of family as other rash viruses like Chicken Pox, Roseola, Measles, Hand Foot Mouth...It starts with a fever/stuffy nose/red cheeks (check, check, check).  Then, a rash appears on the tummy/back/feet/hands...but at that point, the child is no longer contagious.  Most everyone has had fifth disease...and once you have it, you are immune.  You haven't had it?  You  might have. Not everyone even knows when they had it/if their kids had it, bc not everyone shows symptoms.  It's a mild virus that lasts not long at all, there is no treatment bc it is a virus, and the rash might hang around a few weeks, but isn't usually problematic and certainly isn't contagious (again, once the rash appears, no longer contagious).  Brandon had put a call in to one of our GI docs, the one who'd seen Ridge all week. He shared the symptoms, answered a few questions, and also asked if it could be Fifth Disease, bc I wanted to know.  The doctor said I'd done good research bc that's what she was going to suggest.  :)  Yes, I am proud of myself.  All this to say-- PLEASE, parents, NOT bc your pediatrician/doctor isn't good, bc I am CERTAIN he/she is WONDERFUL, but bc YOU ARE THE PARENT-- please please please be actively involved in your child's healthcare.  Ask questions at visits, DO RESEARCH/READ UP ON THINGS beforehand, and after a diagnosis/visit, do more research. Make sure you agree-- bc sometimes, doctors are wrong.  Sometimes they just don't know bc there aren't enough symptoms yet.  They are human. Wonderful humans who take great care of our kids, but they are still human, and your child isn't THEIR responsibility.  Your child is YOUR responsibility.  Knowledge is power and you have the ability to read up on things and be educated and involved in your child's illnesses/well checkups/vaccines/etc etc etc.  I don't have kids in school yet, but as a former teacher, I will go out a step further and add that this advocation/involvement extends to the child's education-- while teachers might be facilitating classroom education, it is not their responsibility to get your child where he/she needs to go -- they are there to help in that process, sure, but as parents, we are also supposed to be training our children in the way they should go.  I know...soapbox.  But before Ridge, I took everything our ped said and just ran with it. I got the vaccines at normal times.  Sometimes it might be a ton of vax at a time and I didn't know. It wasn't that I didn't care, I DIDN'T KNOW. I am PRO vaccinating...but I am MORE pro EDUCATING.  I think you should KNOW what you are putting in your child's body...you should know what the symptoms of an illness your child has mean-- and it's okay to know before you go to the doctor. It's okay to think Sally has strep throat and ask if it could be that even if the dr says it isn't that.  It's okay to ask for a strep test, or bloodwork, or whatever.  I'm not saying be paranoid.  Goodness, no.  BE INVOLVED, though! God gave you that child-- if anyone should know what goes in his/her body, or why something is going wrong in his/her little body, or what's going on at school, it should be US-- the parents!  These precious babies are entrusted to us and we need to take the best best care of them-- we make sure they are clothed, fed, and loved-- but what about their medical care? Why do we so often just allow someone else to make that decision for us?  Because they have MD by their name?  Good reason- but it doesn't make us exempt from being EDUCATED CAREGIVERS FOR OUR CHILDREN! 

okay. i'm stepping off...for now.

I am busy trying to finish October See Saw Ridge Production orders .... won't be done by Nov 1...but I do have several finished.

And...November 11th is fast approaching.  Blake Bolerjack/Soul'd Out Quartet benefit concert for Ridge is at Yukon Church that day.  Contact the church for more details. Tickets are $10 in advance, $12 at the door- proceeds go to help cover Ridge's medical bills.  A love offering will also be taken up that night.  We appreciate all the parties/people involved in making this possible.  God is good.  Because of the concert, there was a write-up on Ridge in the Baptist Messenger here in Oklahoma.  Because of that write up, a small church of about 25 people (my husband spoke to the pastor, who got our information from my dad, who is a BCM director at SWOSU, for those of you who didn't know) became aware of our story and wanted to help. They sent a donation that well surpassed their numbers...I can't believe a church that size was able to be so generous-- Thanks be to God!

I think that's it for now!

blah blahing for you

This post isn't going to have a central theme.  So if you are looking for anything other than a hodge podge, move right along, people, bc there will be nothing to see here.  But if random, sporadic subject changes are something you might be in the market for, keep your eyes peeled, bc you're probably gonna hit the jackpot here.

Ridge is walking like nobody's business.  He doesn't crawl. He walks.  He is jabbering up a storm, but not really saying anything.  I mean, we know he is saying SOMETHING, we just have zero clue what.  Sometimes WE might know what he is saying, but you would never know. It's like his own language.  The cutest language you ever heard.  Until he gets demanding, then it isn't very cute.

Ridge is looking more and more like a little boy. I was going to post some pictures but blogger's image upload isn't working right now.

Wait, maybe it is. I don't know. I will do pictures later.

Sawyer is getting his learn on at school.  The other night I told him we could go get fro-yo at Lushberries in Yukon (bc I had a rockin' groupon to there...) if he said his memory verses.  The kid didn't really want to, but he said all seven of them.  He's impressive.  Today he wrote 15 letters (that's all he knows so far) and we are working on blends heading towards reading.  He is very smart.  We have a spanish workbook and I discovered today we only have one more lesson!  Wow.  I can greet you, tell you my name and how I am doing today...I can tell you most colors...I can count to 10...I can tell you what a handful of foods are...I can tell you how to say mom, dad, grandpa, grandma, boy, girl....I can tell you a lot of clothing items...and school supply items...and we are about to move on to buildings/locations...then we are finished with Spanish.  but we both learned a lot! I got him some more workbooks tonight and finally found some lined kindergarten type paper at WalMart (barfo, I HATE walmart...too crowded for me...but I was there anyway, so there was the paper, so I got it).

What else....not a whole lot.  I've been sewing a lot.  I am finishing up October orders and hoping for just as many in November.  I also have several new items I hope to craft in December because I am taking December off in order to get some Christmas gifts ready.  I can't believe it is almost Christmas again.  I can't believe we might be home for halloween...and Thanksgiving...and Christmas.

It has been so so so good being home.  Ridge got blood last Monday morning at like 5 AM.  It didn't boost him too too high, only to like 11.5....and yesterday, a week later, he was 10.7.  That is very good, considering we take 3 mls of his blood every single day when we flush his line....and considering for about 24 hours he had some darker diapers (not black, but darker)....I am ecstatic for him.  And frankly, I am ecstatic for us. Granted, he still has a central line, and he doesn't have a lot of his vaccinations, so he is still "fragile"...but he is more normal than he's ever been.  He is wearing clothes that are actually the size of his age, finally....and he has the greatest smile and laugh ever.  He loves Sawyer, and Sawyer is a wonderful helper and playmate.  I hope my boys always love each other like they do now-- even though I know they will fight, bc they are brothers.  They love each other a lot. Ridge is a big time cuddler/hugger, especially to his momma.  His daddy usually has to ask for it, but Ridge will randomly just walk up and hug my legs.  Too sweet.

BDawg is just hanging out at work....he is getting to go hunting a bit more this season than last year, bc he has somewhere in Yukon he is allowed to hunt this year.  He is enjoying us being home I am sure, and is helping out a lot with the boys and the house and cheering on his Rangers....and we make a good team with the way things are right now.  He's a great helper, and goodness knows after 8 hours at home with the boys, I need his help when he gets home!

I am still wanting to write a book....haven't jumped on it yet, but thank you to all of you who have offered tons of verbal support!  You have made me feel more confident!

My brain is so full of so many things right now.  I have concerns...I have praises....I have dislikes....I have desires...wishes...prayers, of course, too....one place my mind has gone a lot lately is to our sin and God's grace.  By our sin, of course, I mostly think about mine...but you have some too...bc you know, ALL have sinned.  That means you, too. :)

I think it was perfect timing when I heard this song, which I've always liked but hadn't heard in awhile, the other day:


I am who I am.  I like who I am, for the most part.  But, just like you, and everyone in the world, I have flaws. I have things I don't like about me.  Things that seem intrinsic within me....things that are my self, at war with who I am called to be. I bet you have things like that too...or maybe I just say that to make myself feel better....but no...we all have things like that.  These things I hate, these things that cause me to "miss the mark" (aka...definition of the word SIN), they are things that are not to be a part of my life....or yours...but they still creep up sometimes.  But ....  warts and all, Christ takes me in.  Which is a good thing, because none of us has any hope in our sin.  None of us has any true, eternal hope anyway, not without Christ.  And when I get the most down about my sin is when I feel like there are others with their own agendas, opinions, judgments about it.   Like I don't know it's there?  Um...duh.  But....My Savior's always there for me.....does that mean HE likes when I sin? Certainly not. I don't like it when I miss the mark, so most assuredly He does not, either.  I don't know. I am rambling.  Point, though-- why do I care if arbitrary people have issue with me, if I know I am right with God?  I'm not saying sin so grace can abound more, nor am I saying to be a whitewashed tomb....I just find a sense of freedom in being able to be who I am created to be.  Do NOT misunderstand-- not be who I am intrinsically-- because inside, at the root, we are sinners.  freedom to be WHO I AM CREATED TO BE-- in God's image, the woman He has made me to be.  Will I stumble?  Well, do you?  So sure, I will.  Do I have the capability to stand grasping the hand of the One who put me on my feet in the first place?  Yep.  Do you? Yep.  Am I forgiven in Christ? Yep. Are you? Only you can answer that.  Will I mess up again?  Yep. Will I get up again?  Yep. So when I see others around me doing that....that very same thing...what will I do? Push them back down? Shake a finger of shame at their face reminding them of their sin and the ugliness it is?  Sigh.  I hope not.  I hope I will help them rise out of the dirt, no matter how many times they fall in it.  Or I hope I will at least stand back and rejoice quietly if helping them rise isn't really what they need. I don't know. I just find it frustrating how pious we can be at times.  You don't have to agree...I warned you I was going to be fairly random tonight.

I don't really have a lot of sense to make, I'm just working through my thoughts and feelings and thinking on some conversations via email, facebook, phone, real life...you  name it.

So what? What do I want to be? Who do I want to be? Who AM I?  Who are YOU?  I don't know.  I want to be as free as Christ intends for me to be. I want my chains to be removed- chains of sin, chains of concern for what you, you, you, her, him, whoever thinks about me, chains of what society says is right or wrong, chains of what "religious" people say is right or wrong...whatever. I want what JESUS says is right.  Not what you THINK Jesus says is right.  What HE says is right.  I want to be pleasing to him.  Not you. Not any of you, or any of "them."  Not that I don't value your opinion, because of course, I do. But I don't value your judgment (for those of you who internalize things- I'm not necessarily speaking directly to YOU specifically, so dont' get your feelings hurt. :) I'm RAMBLING, journaling, sharing my thoughts...).  I want to be able to look past the sin of my fellow humans, even if I can't see it, because it is most definitely there, and love them the way I know Christ loves me.  I want my relationship with Christ to be right, of course, but I do not want sin and Satan to have the power over me to let my sin weigh me down anymore than this: through the conviction of the Holy Spirit, my sin be brought to my attention, my self be bowed down, and forgiveness be sought, and granted, through the Love of Jesus Christ.  Because He HAS overcome.  Sin and death has NO power over me.  Because I am in Christ Jesus.  So even though I fall, every single day, He WILL raise me up. Every. Single.Day.  And I'm hard enough on myself. Sin is heavy enough. You're hard enough on yourself. Sin is heavy enough. You don't need me adding to your load.  So I hope I don't. I hope YOU don't.  I hope that, in Christ, we lighten each other's loads.

I hope that this was random enough for all of you.  I'm not sure I'm finished. But I'm going to stop for tonight.

Psalm 139:14
I am fearfully and wonderfully made.


So are you.

whose keeping stats?

okay. here's the scoop or the play by play or whatever for this past four weeks...as in, almost a month.

1. Ridge has been home (as we all 4 have) 21.5 of the last 28 days.  Ridge has been home  (as we all 4 have) 24 of the last 28 nights.

2. Ridge has gotten blood 4 times in the past 28 days.

I don't have to type anything else.  Because you all know, that is huge.

lookie lookie!

we are in the hospital, so my post will probably be a little bit abridged...

short of it:
1. ridge is getting four teeth. by the time we realized this, he had started bleeding.  he got blood last sunday, and after that, had one day of normal diapers and then all week has been having the black "bad" ones....so...
2. we got blood thursday and went home (late, due to some stupid orders)
3. we came back friday bc he'd already blown right through all his transfusion from thursday.  but after getting blood friday, although he was still having BLACK diapers...he didn't need blood again saturday...or sunday...and he didn't even need it monday but it was so "close" that we went ahead and gave it anyway bc the lab was taking forever to get his labs back....so anyway....he didn't respond as well as i'd hoped...but his second lab after the transfusion was the same as the first, so he was stable....and then...
4. normal poop!

this is exciting, because even with black stools ALL week he only got blood three times.  and normally, black poop would mean a transfusion a day for us...or more.  we did not go up on his amicar.  we did not give steroids. we did not do ANYTHING but give red blood cells.  and the bleeding still stopped.

it IS getting better.

and with cautious optimism, i say...

the worst

is

over.

we need your help.

Below is a picture of some of the children with MLT/CVAT, the disease Ridge has.

Wisconsin is working on gathering funds for research on this disease. So far, there is little to no research on the disease, and there is no known cure or treatment.

Ridge is fussing, so I can not share a lot right this second, but here is a link to a petition we are working on to gather funds for MLT research.  Please take the time to sign it, and share it with those you know.  This would provide funding for research on the disease and help doctors figure out (possibly) more effective treatments.  It would also help, hopefully, provide funding for MLT families like ours to travel to Wisconsin when needed for research opportunities (no guinea pig stuff- we won't do that...I'm talking about labs and stuff that has to be done on site).

When you fill out your information, you click SIGN NOW, and then you must click SIGN again for your name to go through. Please take less than one minute to do this for these kids.

click here to sign the petition!

two weeks, baby.

Ridge is at the hospital with Sawyer and Bdawg.  He is getting a blood transfusion.  He wasn't quite at transfusing level but we weren't sure when he went in this morning.  He his not bleeding, just needing blood.  He went fifteen days without getting ANY blood transfusions!  His diapers have all looked pretty normal and he is growing so fast!

Today at the hospital he weighed 10.15 kilos, which is like 23 lbs.  he was an INCH taller than two weeks ago! I know it could've just been a discrepancy, but still....He is walking!!!  and he's so so cute.

Everyday, in a moment that I might get down about all of this, I hear that voice again saying "it's over."  It is a peaceful sound and it is not something that I'm reminding myself I've heard...I am STILL hearing it.  God is good.

Some quick recaps in our road...

Last July, we went to the hospital...we knew things weren't great and Ridge was basically about to begin fighting for his life.  His hemoglobin was at dangerously low levels and when he was scoped and biopsied, we got news he had MLT.  I didn't really know what a normal scope image would look like, but when I saw the pictures of Ridge's belly inside, I didn't know I was looking at something abnormal.  all over the surface were bumps, but they looked "normal" color bc all the blood had been washed away during the scope.  I asked how a normal stomach looked because to me his didn't look bad, and the doctor showing me the photographs said, "you see this tiny spot of pink, smooth surface? that's how our stomach looks....his all looks like this bumpy part."  weird.  surreal. scary.  and i'm sure his intestines look/looked the same way, they just couldn't get good pictures there...bc...well, there is "stuff" in your intestines... :)  so we began a horrific journey. life was literally turned upside down.  we went from multiple blood transfusions and platelet transfusions to a day of normal, then to an outpouring of bleeding, went to the ICU covered in our son's blood that he just kept throwing up....saw 8, 9, 10 red dirty diapers a day for a week at a time...slept little to none....came to grips that God might chose to take him from this earth.  Put him on a lot of medicines, the safest ones we could, and watched him slowly get better.  Moved to a regular hospital room and quickly watched Ridge decline again.  Witnessed him coding and almost dying...went back to the ICU where again we were covered in his blood....four huge red vomits in an hour....lots of red diapers....nurses pushing blood into him with a syringe bc waiting on it to go through an IV pump was too slow.  Witnessed him getting blood transfusions and being at exactly the same hemoglobin as before...gaining no ground.  Pushed more of the medicines...mostly the steroids....watched him get puffier and puffier and unrecognizable.  The bleeding stopped.  We made it weeks, still living in the hospital, without a blood transfusion.  As we came off the steroids and weaned a bit of the octreotide, bleeding resumed and we had a few more scary times, but none like those first two.  Finally we were able to go home, after five long months.  Ridge hadn't seen his house in five months.  He had changed so much. He was still on so many medications, and it wasn't two days home before we were back and in bad shape.  We were able to get the bleeding under control with high dose steroids again and he pulled through yet again. december 2009-present was filled with so much back and forth from the hospital to home I can't even count.  In may he got an immunization and bled horrendously.  He managed to keep it all down without vomitting that time but he was back to the awful amounts of awful bloody diapers.  He received 25 red blood cell transfusions in 10 days time and also received many platelet and plasma transfusions.  After waiting it out for five days or so, we had a somberish birthday party for him and sawyer and their friends, right there at the hospital...and then we agreed to start steroids again.  The bleeding stopped again.  After that, we fought a port infection all summer which caused him to bleed a lot.  We finally had surgery to remove the port.  Shortly after that is when I heard a voice from heaven, for sure, say, "it's over."  And we have been home for fifteen days.  Ridge hasn't needed blood in all that time.  And while our trials have been difficult and our  year has been hard, we have fought the good fight. We have persevered in our faith and our journey and we have preserved our son's life.  None of it alone.  Only by the grace of God.  Only by his hand.  his provision. his faithfulness.  He is enough. He is more than enough. He has carried us.  Will no more darkness fall upon us?  Who am I to say? Today may be our worst day yet. But it may not.  And the light...the Light always shines brighter than the darkness.  We are walking out of this darkness and back into some light.  Thank you, Jesus.  Thank you for your faithfulness, your provision of wisdom and patience and peace.  Thank you for preserving Ridge.

I have no more words.  I have nothing else that I could ever ask God to do for us.  He has been enough. I will want for nothing, ever again, bc nothing that seemed to matter before matters anymore.  My God is mighty to save.  And he has given us the patience of Job through this trial to watch and wait and trust.  And he has refined us.  And maybe he isn't finished.  But he has proven himself faithful. I am so glad we have been patient.

To God be all glory and praise!

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.

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.

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?

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

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?

tiiiired

i'm up late working on something really cute. but i'm too tired to think about the next step in it, so i'm going to go to bed. write a sure to be nonsensical blog post.

how the heck is everyone? i'm not sure who even reads this anymore, and it's more like therapy for me anyway, so it doesn't reeeeeaaalllly matter, but whoever you are, wherever you are, i hope this finds you incredibly well.  if it doesn't, i can assure you, you aren't alone! :)  while i seem to be physically well right now at the moment, there is a lot of tiredness in my life....and sawyer had a tummy ache part of today that seems to have gone away, i sure hope so anyway...ridge is bleeding again, but not badly enough to get blood yet, so we are still home.  but that is nervewracking.  brandon is doing well as far as physical health/not being sick goes, as am i(but i know, i already said that.)

i am sleepy tired, and i am tired tired.  sometimes i don't want to go to sleep bc there is much to be done in the way of housework, laundry, necks to hug, and craftiness around the house.  and i'm a glutton for being home, so i like to stay awake and be IN our home as much as possible.  but i am also mentally and emotionally tired from this ride.  i'm tired, in general, of having to do this.  i know that isn't probably the best attitude to have, but it's still the truth.  it's been too long.  it's been enough....in my opinion. i know i don't call the shots.  and that's fine. we'll keep pressing on, bc really, what the heck ELSE are we going to do until this ends?!?!?  but i'm tired of it.  i'm tired of having to avoid busy places-- places containing people who want to touch the cute baby, bc who the heck DOESN'T want to touch a cute baby or give him high five or whatever?  especially when it's people you are acquainted with!  and it is difficult because you never know if people want to or even have time to hear a big speech at the grocery store or on a walk or even at the hospital about how we can't be around a lot of people/in close proximity with people who might be touchy touchy with ridge.  if i wasn't afraid i'd bore them to death, i'd explain that every single time just so people knew i wasn't being weird....or i was at least being weird for a good reason.  because it is difficult, and i am weary from people not understanding.  don't get me wrong-- i don't feel like anyone is second guessing our decisions or scrutinizing our shut-in type behavior.  i think everyone knows in the basic sense that ridge can't be around a lot of people.  but i am tired of feeling like the bad guy.  all you mommas out there know you would do anything to protect your children....anything at all.  and i will.  but it is a weary road to have to either stay home...or stay a distance away from people when we are NOT staying at home....and it is a weary road to have to tell people to stay away, or to not touch ridge, or to use the hand sanitizer, or to make sure people are immunized if they are going to be close to him.  i HATE it.  HAAAAAAATE it.  bc i'm not the boss of anyone but my children...and i'm really just a steward there anyway.  but as much as i HAAAAAATE and Bdawg hates being the rule maker there....i guess we will press on.  the act itself of having to be precautious like that gets on my nerves.  makes me angry. makes me sad.  and it makes it all the more difficult when you don't feel like you have the platform to explain it.  because everyone's time is precious.  so to all of you who read this and i know many of you who do read this are people who call us regularly....or send us notes of encouragement....or visit at the hospital or even when we are at home....or see us on a walk in the neighborhood....or see us at the grocery store (which we can now go to bc i can totally cover the cart up with my handy dandy shopping cart cover)...or send us text messages...or send sawyer super cool mail....thank you for sticking by us.  thank you for understanding that this is a season. just a season. and one day, this season will be over, and ridge will be able to take all those hugs and kisses i know you are storing up for him.  and we will be able to open our door to you, without reservation and without fear. and i won't have to chase you with germ-x.  and i won't have to ask you to get a flu shot.  and i won't have to wear a mask when I'M feeling under the weather.  and sawyer will be able to go to school. and we will all four be able to go to church.  and we will get to visit family out of town. and we will get to go on vacation. and we will get to go to the movies- all four of us and ridge will be able to sit in the nasty seats and lick all over them if he wants to (although it will still gross me out).  thank you thank you to our friends and our family.  i can not imagine how it feels to have to wonder if it is okay to stop by or okay to breathe when you are in our house or hospital room or whatever you might wonder...i can't imagine. but thank you for trying to understand where we are coming from. and thank you for still being there...bc as much as we need our friends now, i promise we will still need you just as badly when this road is all over and done and we can be in the same room with all of you at the same time.  so thank you for not giving up on us and being faithful to pray for us, encourage us, love on us, whatever it is you do for us- thank you.

my eyes are crossing with tiredness.  i will actually go to bed now.  i hope the day finds you well...or the night...whenever you are reading this.  a few things i can't get out of my head from today:
one friend told me, while sharing some hardships of her own, "but we count our blessings, not our hardships, right?" and oh girl, did i need to hear that.  i think my hardships this year have outweighed my blessings sometimes, but i know that isn't true.  it is the least true thing i could say.  because this year, our friends and family and community and church have stood behind us in a way we never would have experienced had we not been given Ridge.  we are blessed.  it is hard for me to see it some days. but we are incredibly, richly blessed.

and another friend reminded me today...a girl i went to HS with, and haven't seen in probably 10 years.... "by his stripes, we are healed."
AMEN AMEN AMEN.

good night.
xoxo

waiting around....

i'm not waiting around bc i'm bored.  well, i kind of am bored, but not for lack of having things to do. i have a ton of things, crafty things, to be doing. but it's 10 pm.  so i quit for the night....and sawyer was in bed at 8:30....ridge usually crashes for a few hours around 9...so bdawg and i were gonna catch a movie on demand.  so things worked out great because ridge was wide awake and laughing....the cable wasn't working....and i've been trying to drink one cup of coffee all day and haven't gotten it done.  so here i sit, blogging and trying to drink that coffee while ridge is in the back of the house with the hubs....throwing a huge fit (the baby, not the daddy).  man.  if you didn't know our history, i bet that sounds kind of...normal.
sawyer got 3 letters in the mail today (well, cards/stickers/whatnots).  what a day!
i went to target and hancocks and homeland....did quite a bit of sewing....my parents came by for a bit...and last night uncle G and aunt B (maybe i should call you something else, since the OTHER aunt is already deemed aunt B....hmmm...aunt DB it shall be...until i find a more suitable term for you) and Sir Baby Noah came over. I like calling that baby Sir Noah...so Sir Noah he shall be.  anyway, i COOKED dinner for the....well 6 of us who eat table food...Sir noah just chilled in his carrier until he woke up and his momma held him. Anyway, we had spaghetti.  and ridge LOVED it!  ridge is getting so big. he likes to eat table food and he is oh so very close to walking!  he still loves the idea of a bath so i have to gain some patience or just decide to get his central line out and another port placed bc he isn't going to be patient about not getting a regular bath much longer.  ANYWAY...so sir noah and all of his cuteness was here...hanging out at my house.  it was a grand time filled with baby eyes staring at the light/ceiling fan, borrowed washing machine time to clean sir n's baby clothes....chitty chatting with aunt db, lego mania with uncle g (okay, not lego mania....but giant legos, sawyer, and uncle G, so it was a fun time)....anyway...just some good hanging out time.  no cards were played or anything bc now with 3 kids around it seems like someone always needs to be fed or changed or held...or maybe we are all just too tired to want to do anything but sit! ha.  anyway, so glad they are back.

i'm rambling. i'm tired. too late for a movie i guess.  no, the coffee doesn't keep me awake. it doesn't really even phase me.
ridge is doing really well still.  we have about 4 more days on the steroids, and then i think it will be interesting to see how well he does.  normally after we come off the steroids, it is only a matter of days (if even that) before the bleeding resumes.  he is getting older every single day so i am
certainly hoping that this time at home will be a long time....filled with some normalcy.  i even made him a grocery cart cover so that he can get out with me now!  (not yet, not while on the high dose of steroids...but...soon!)...SEE:

i used a pattern and everything-- so straight laced am i.  normally i free lance everything/make my own pattern....but i bought the pattern and about had to throw it in the trash before i was finished, but we made amends and i forgave it and used it anyway.  i was quite proud of this project because i usually make for others-- gifts or orders or whatever, but i don't usually make for us/our kids....so ridge got something GOOD out of yesterday's work.  plus it's in OSU colors, so i know you will all agree, it is absolutely adorable.  right? all of you. ALL of you. (um...if you don't know me, you know i'm not serious...because i could care less about pretty much ANYTHING having to do with sports.  but bdawg is a pokes fan, so i ran with it on the cart cover.)

my eyes are crossing i'm so tired.  so i will sign off from this random post. i hope the week has found you well.  thank you for your thoughts and prayers! our hope is that normalcy will be here sooner than later....every saturday night at home i become somewhat sad...i am glad to be here, but i know sunday is rolling around, and i just dont' feel like we can take ridge to church when he is on the steroids and has his immune system so compromised....but we so miss our church. i know some of you Yukon Church friends read this-- WE MISS YOU!!! thank you for the kind cards and awesome gift basket full of snacks when we were in the hospital.  for the phone calls/voicemails/text messages/prayers....oh we love you, church family!

well....i don't really have anything else to tell anyone tonight!  if we can stay home awhile, maybe i shall get better/back in the swing of things with the blog!

take care!

alisha

normal? [alternately titled: thank you, locusts.]

so...ridge feels AWESOME.  we got his port taken out, and it has made a world of difference.  Of course, he is on steroids right now bc of some bleeding that couldn't be controlled due to some other med issues....and he would've had to get some steroids anyway before surgery....so we are trying to embrace the roids, bc he feels good when he is on them.  we have about 6 more days before he's off them again.  the day we got home....well, the next day...sawyer woke up from nap with a fever, headache, and sore throat. i am so tired of illness.  he is on antibiotics and holed up watching a slew of movies and doing crafts in his room.  he is having a good time with it but i just want us to all be together!
speaking of sawyer, he is really having a rough time, i think with all of this.  he did okay at first, and he still does sometimes.  but it has been a year that his life hasn't been normal.  i don't want to go into a lot of details but i just know this road is getting hard on his little spirit.  please pray that things will begin to improve with ridge- we need that to happen so that our family can try to be a little more normal.  i have tried recently to spend some one on one time with sawyer, outside of the house and outside of the hospital. brandon tries to do that too.  but it doesn't change the fact that we are ALWAYS worrying about ridge's MLT/ridge getting sick/ridge's lines/ridge's development.  sawyer would've had to share the limelight either way with a new sibling, but i just feel like he is probably feeling a greater overshadowing bc of this disease/hospitalizations/etc.  so please pray for him and for us and for ridge.  things HAVE to get better, bc our little family just really can't take much more i don't think.  I know God will carry us/won't give us more than we can handle/blah blah blah-- i KNOW that.  but i really believe it is time for Him to say, "ENOUGH."
also speaking of sawyer, he loves to get mail.  he asked me more than once today if he got any mail.  so those of you who have our contact info, and are feeling like you want to do something to give your heart some wings or whatever, feel free to send him something. i don't mean gifts or money or whatever, i just mean some mail.  he gets a highlights magazine once a month from his gibby and loves that.  he'd probably love post cards or stickers or a picture your 2 year old colored or whatever.  i'm not fishing for gifts here, i promise, i just think that is a way to boost his spirits a bit right now. we are working hard at telling him how much he is loved, but i think that might make him feel really special to get a piece of mail for a few days in a row.
my email is seesawridgeproductions@yahoo.com if you would like to email me for our contact info.
now, onto the rest of this post.  normal.  what is normal? i don't even know. we were in the hospital basically a month this last time. all of our milk and yogurt went bad, so did most of our produce.  so the other night we went to the grocery store. ridge had never been. bdawg held him the entire time and ridge was pretty much in awe.  before that we dropped some things off with aunt b and uncle g who have moved back to the area and we are so glad and anyyyyywayyyy, we were driving to the grocery store and i just couldn't keep it together.  i LITERALLY can not remember what it feels like to be normal.  to be cooking in my kitchen with no big cares in the world, to be driving my family to the grocery store to buy a few things just like it's normal.  i don't remember that- i DON't REMEMBER HOW THAT FEELS.  it is overwhelming.  i am typing this post with a billion invisible pounds of burden weighing me down, and yes, i can give it all to God like some of you will say, but it doesn't take the situation away!  it is impossible to feel even a semblance of normal.  or close to impossible.  that night, after my meltdown and my grocery shopping for which i had no coupons with me so it cost me a crapload of moolah for like 4 bags of groceries, i was sitting in the living room, late, and it was quiet bc sawyer was in his room going to bed and brandon and ridge were on a walk, (wait, this was all the next night), i heard the crickets outside.  or a locust. or something. something that reminded me of summer night sounds.  something i hadn't heard in...a year.  it's hard to hear that stuff when you are living on the 8th floor of a hospital.  and for a second, i remembered what i felt like to be normal.  really-- in the brrrrrp brrrpppping of those insects and the silence all around me, i could remember hearing that sound before, in another time and place in our lives, a  time when not all things were right bc they never will be but a time when things were the same for us as for the majority of people in the world.  a time when i didn't feel like i had to remember a million things, have a list of meds a mile long for my one year old, a time when i might not have wanted to leave my children to go to work or to go out, but i COULD, a time when i didn't feel like crying about every stupid thing and didn't feel like things were so out of control they would never ever ever come back to normal.  a time when i cooked more than i ate out and when i might not have exercised enough but i had time to if i wanted to. a time when i didn't try to work nonstop when i was at home and stay up super late either working or catching up on movies i want to see because i could do that stuff another night, another weekend, whatever.  a time when i didn't have to worry that my house wasn't going to be cleaned or i wasn't going to get to have people over for dinner, bc if it didn't work that day, it would work another day soon bc i was always home.  now, each moment is all i've got.  it's all we've all got i guess, but it is more apparent to me now.  and while that moment was fleeting, i am thankful for the locusts.  i'm glad they didn't come in a plague this time or anything, but i am thankful for them in that one moment, that split second, because they took me to a little bit of normal.
school started this week. students start tomorrow.  this is incredibly difficult for me on so many levels, but mainly bc i love working with juniors and seniors in high school and building those relationships. i also love math and miss teaching it terribly and while part of me is glad to be at home with my kids, glad to be able to work on some crafty things i couldn't do before, glad to be realizing if i couldn't teach ever again, i'd become a nurse or something in the medical profession, the tug at my heart that tells me i belong right where i used to be will not go away.  so to all my YPS friends who still read this blog, i hope you have a great year this year.  i am jealous of you.  i want to be there more than i ever knew i did.  and it isn't easier the second year around.  my heart could just burst i am so sad that i am not there.  i'm not kidding.  sure, things won't be perfect this year for any of us. sure if i ever get to come back, things won't be perfect then.  but i know that is where i belong.  and i can't wait to be back there with you all.  so while you are either excited for a new year or dreading that your summer is over or both...know that i want nothing more than for my ridge to be well enough that i can be back to work with all of you and with the students that drive us crazy but also, i've realized, keep me sort of sane.  i miss you guys.
and with that, i'm signing off.

prayers...

lately i find myself praying with most of my breaths.  praying things like, "Lord, let this end for us. Let it be over.  Let this be the last bleed Ridge has before outgrowing this."  I know we can do this the rest of his life if we have to, but seriously, I do not want to.  I am so ready for a normal-er life.  Even if I never ever can go back to work- which is hard to adjust to, so we're not even talking about that yet, the plan is still to go back in the next year or so if I am able to and if the school can rehire me at that time-- but even if i can NEVER go back to work, I would just like to have this stupid disease behind me.  it is beyond exhausting and frustrating.  I am really trying not to complain.  I am just weary of the journey.

July brings new residents, new fellows, and quite a few new nurses, so this is a difficult time to be in the hospital. Things don't get ordered/get ordered incorrectly/things just get messed up.  It is frustrating.  I want to go home. I want all four of us to all be home together . The past 12 mos just haven't been anything I'd ever imagined.

Ridge is on a higher dose of Amicar, we are hoping to get dosing figured out so that we can hopefully stay on that and be off of the Octreotide forever.  We covet your prayers for complete healing, stopped bleeding, wisdom, financial peace (um...can I just say the process of trying to get ANY financial help is RIDICULOUS?  I know we are in the middle so we have to fight to try to get any federal aide...but seriously we have been working on it 7 months and "it's in the mail" is getting old.  It isn't in the mail.  And I know based on Ridge's disease and income he will qualify for something.  How great would it be if we could actually get it while he NEEDS it?  bc if we get it later, it doesn't do any good...it isn't THAT retroactive....) so pray about that stupid process too.  So many things are just so overwhelming and frustrating right now.

I began working w/ sawyer this week on homeschool pre-k/K curriculum.  He has mastered the phonetics of the letter I, though he can't write it well yet....and he has memorized John 1:3 and Genesis 1:1.  He is a very good student :)


The only thing getting me through this rollercoaster sometimes, seriously, is imagining what I am going to do when it is over.  Before working again, before anything like that again, there will be many vacations had.  I'm not kidding. IDK how they will be paid for, I don't really care-- they WILL be taken!  I'm ready to get away with a couple of girlfriends who have walked this road with their own children, and Brandon wants to go on an Alaskan cruise, and I have consented to that...and when Ridge is better enough, we will also find somewhere to shack up as a family of four....all summer.  That's my plan-- a summer at the lake, not too far away, but far ENOUGH away.  Really, sometimes I just daydream about that stuff bc it is really what gets me through some moments...and i know we will get those dreams....someday.

I thought of some other things to inform you all of, but they have slipped my mind.

Those of you who are fans of the business/my projects, if you are on FB,  become a fan of our page-- SeeSaw Ridge Productions-- soon, as in, the next time we get out of the hospital, everything I have pre-made/in stock will be reduced 20% or more in price.  Good time to buy.  Off the top of my head I know I have a few bows/headbands/hats, several burp rags, a few pairs of baby shoes, possibly an apron or two, a baby swaddler, and lots of jewelry.  So if you are wanting or needing a gift, now's the time.

So much more to tell I am sure but I can not think of anything.  SO there is our update for now.