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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, September 26, 2009

lazy day saturday

Here's the scoop-
Ridge is spitting up some brownish stuff and occaisionally redish/pink....he also frequently spits up just regular spit up/milk/etc....
They are going to reduce one of his meds, but not the steroid since he is spitting up blood products. He is getting a reduction on the med that is supposed to be permanent- his octreotide. We will see how that goes...the reduction begins tomorrow.
He's taking a form of prevacid that is supposed to dissolve in water...but it isn't so good at dissolving.
His blood pressures are still running high, so we may be introducing a secondary BP med but aren't sure yet....
He has been pretty happy. He is not eating a ton in the way of milk anyway, but he loves his baby food.
I guess boring is good; we don't have a lot to report. I can only speak for myself, but I am getting weary of this whole process. I want to be done with it. I know it isn't my timing, but I'm just done done done with it it feels like. I need a second wind, or a third wind, or something. It just gets so frustrating. One day at a time.......right? :) We are about to take the boys outside the hospital for a little fresh air and Vit. D!

Hope your Saturday is/was great!

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