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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, October 17, 2009

black is not the new pink. or the new yellow. or anything. get OUTTA here.

So...the poop is still dark. We are having trouble conveying the exact right dosage of octreotide to the resident. I don't understand how we are halving the dose EVERY week, but when it was too much, it seems like it is impossible to just DOUBLE it to get it back to what it was before this fiasco. It isn't a fiasco, but the math of the situation is just annoying. Especially to a math teacher. I have the exact dosage requirements written down, b/c I am super nerdo and try to be organized and in control so I write everything down- and while some of you probably think that is so crazy...can i just say it is perfect for a situation like this?-- anyway, I have the data written down. I will definitely be laying THAT on the table tomorrow since no one has come by to see it TODAY. I know what the med dose SHOULD be...I don't get how it is so difficult to get it RIGHT. The first time, it was pharmacy's fault. I don't know whose fault it is now, but seriously....let's just get it right!
Not mad. Just frustrated. Everyone here is STILL wonderful. I just don't get what is going on with this right now. ick.

No spitups, though. Well, a few, but they have been milk/clear/baby food/ NOT brown/NOT bloody. So that is a good sign. If this poop could just lighten up. Literally.

No other real news. Ridge is getting close to being able to sit up, which is GREAT. He is still not able to roll over on his own, which is certainly a delayed milestone.

Sometime this week they will probably have an xray done to double check his bone lesion status and see if things have gotten worse. I don't think there is much knowledge on the topic of bone lesions in MLT (or of MLT in general)...so I don't know that we know, or anyone knows, what they are looking for in these lesions on the bones. They do think they are not problematic other than potential risk for fractures....but it's just kind of an anomaly upon an anomaly. guh-reat.

hope everyone had a good weekend. i will try to keep the posts coming. but right now, the little sitter-upper is fussing.

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