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


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

Saturday, April 17, 2010

i suppose it's time for an update

wow.  not a lot to say, but i know it's been FOREVER since we've posted anything too new or pertinent here.

so here's the newsy notes:

1. Ridge is home. We were in the hospital last thurs (4/8) through Monday (4/12) because he was having a bleed related to the cold/congestion/respiratory virus/whatever he had.  strange to think that a cold would make someone have GI bleeding, but this disease is a mystery.  It is of utmost importance we try to avoid Ridge getting sick.  Which is why at the sign of any illness any of us have been around, I became a total freak.  It is so hard to decide whether getting out for this or that is even worth it when something so minor can set Ridge off. I think he got two transfusions this time.  His hgb isn't super high, it's in the 9's, but we are home anyway, because all we'd be doing at the hospital is sitting and waiting.  So we're home.
 2.  Ridge is on the last four weeks of his steroid wean, providing nothing major happens in these four weeks (bleeds/illness/vomit/fever/etc.)  So hopefully, in four weeks, he'll be off the steroid, and be able to function a little better under stress/illness.  Who knows.  His steroid, currently, is in tablet form.  We mix it in with some baby food. He's not dummy.  He knows it's in there. And steroids taste nasty.

3.  Ridge is small, still. Hopefully as he continues to come off the steroids, he will grow.  We try to feed him as much as he'll eat....He will have to take pediasure instead of whole milk at one year of age, in order to get some complete nutrition, plus several cals/ounce.  He hates the pediasure.  He just wants to be breastfed and eat baby food.  It's frustrating that he won't take it.  Pray that he will respond to it, or that we will be able to give him the whole milk with supplementation or that he would just start to grow!  He's a tiny thing.

4.  He's a tiny thing who will be ONE year old in SIX DAYS!  Unbelievable.  In some ways this year has flown by and in other ways I feel like I've aged ten years and that Ridge should be five by now or something. 

5.  Sawyer is a big boy.  He is no baby anymore. He's a great helper and mostly obedient.  He is good at going to bed most nights, and is super pumped that tonight is pallet night, and that Cox On Demand has all THREE of the Teenage Mutant Ninja Turtles movies on Demand.  We've gone through two of them, tonight we'll be watching numero tres.  Uncle Garret would be so proud. :)  I am working with Sawyer at home, trying to teach him to write his name.  We worked with the letter S some this past week and he was a good and patient student. I don't know how he is for his super sweet teachers at school, but for me,while he can have an attitude at times, when we were "learning," he was soakin it up.

6.I've been busy.  I am about to post some photos over here:  crazydayphoto.blogspot.com
I am having a jewelry party at the home of a friend and would-be coworker if I were at school this year...that's in a couple of weeks. I've got a couple more lined up during the summer.  I am also going to a craft show in Noble May 8th.  So those things are exciting.  It's hard to find time to get everything done, but I love my work.   I've also been overly privileged to be asked to speak at Southern Hills Baptist Church May 4th. I don't have a lot ready, because our life changes so rapidly, I feel I will probably just have to let loose from the heart of the moment that night.  It's been a long time since I've shared in a large group, so I am excited and nervous.  I am excited to get to share this testimony of our lives....I am more excited for Ridge to one day be able to stand and share his faith and his testimony of how God took him through something so ridiculous as MLT....and I pray and hope every day that when Ridge stands before people, a miracle in front of my own eyes, that  he will not even have any recollection how scary this beast of a disease can be. 

7.  I have some stuff to type about b-dawg and more updates on myself as well, but it will have to wait for now.  Gonna upload some pics and get back to work before pallet night starts!

2 comments:

PJ said...

I am so glad to hear your updates. I'm glad things are getting better, and you're able to include some "enjoyable" things(work and past-times) in your life now. I know that Ridge's illness must take up so much of your energy and strength. Sawyer sounds like a very caring, sweet little man. Stop by when you can. Congrats on being asked to speak at the Church. Testimonies are wonderful things. You help people even when you don't realize it. What might seem "simple or mondane to one person is life-changing to another, believe me I KNOW. Your faith and your strength is a testimony in itself. God Bless You and Your Family. Even little Sawyer had to show faith and strength during all of this. You have 2 courageous little ones.
Again, God Bless You.

PJ

wrensmommy said...

thanks for the update! it's great to hear you guys are at least at home now... and that overall things are looking up! :)
they always have us on the "weight alert"... but after talking to many of my mommy friends with 10-20th percentile perfectly healthy kids... we've decided to just do what we can and breathe! haha... of course, when the little ones are sick it adds to the worry- but they usually eat what they need. (wren's now in the 5th percentile for her actual age.)
i'm going to go check out the pictures! :)

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