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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

Friday, November 20, 2009


Okay....i'm risking it.

at 6 pm wednesday night, we got to start the amicar-- the drug i'd been asking about at the recommendation of a fellow MLT mom.  ridge got his first dose then, his second at midnight, and his third at 6 am.  by 5 am, his poop was brown with yellow in it.  at 8 am, the same.  at 8:30, yellow.  every subsequent poop since then has been yellow to yellowish green.  i don't lie.  is it bc we started a new drug? i don't know.  the timing coincides perfectly but who knows.  i am anxious to see the results of his labwork tomorrow- we have gone to every other day CBCs and everyone is making every decision based on going home (do we put in a PICC line?  well, yes, he probably needs one, but no, we don't want him to have it at home, and that is our goal- HOME, so we aren't putting one in.  do we do the amicar IV or orally?  well, it will be orally at home, so we will give it orally here.  we will order you a home hemoglobin monitor, but we want to order it now so you can use it here so you will know how it works @ home and how it compares to a CBC.  etc. etc. etc.)

so if we're in the hospital five more days or five more months, at least every decision is working towards the ultimate goal of going home.  Ridge turns seven months old this next week.  Which means we are that much closer to being out of this first year, the worst year, of MLT.  Not that I'm not still praying for God to just heal him and take it away, bc i pray that every day.  but every day the Lord gives me with Ridge now is one day closer to a day when I can hold my son w/out wires and w/o lines and w/o meds and sort of w/o MLT.  give thanks.

1 comment:

Anonymous said...

this is a test comment for the ceers-- will it work? will it???