Monday, May 21, 2012

Time flies…

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Whether or not we’re having fun, time flies these days.  Our days have been a mix of fun and exciting, and chaotic and worrisome…what else would you expect!?!

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Lucy is in need of a blood, thankfully she is scheduled for transfusion tomorrow. She is beyond white in appearance, she looks, for lack of a better description, translucent.   There are times when I look at her and it takes my breath away how pale she really is.  Her autonomic nervous system is an even bigger mess and we hope that by giving her blood things settle down a bit for her.  Her energy levels are lower than her normal low, being anemic isn’t helping. 

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Lucy has had a combination of not so good and not so bad days.  The massive increase in Keppra appears to be doing its job, please please knock on wood.  The “Keppratude” is not bad, in fact Drew and I joke asking if it is possible that she is paradoxical to Keppra, we have had more days during the past week where she has been as sweet as pie.  For those of you who don’t “really” know our girl, we describe Lucy as being mostly irritable and sometimes happy.  This is just who she is, and we love her!  So to have days where she is mostly happy and sometimes irritable has been a pleasant change.  All joking aside, we are hoping that this is an indication that the meds are working.

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We are nearing the end of the school year for 3/4’s of our kiddos. Translation, our calendar is full of events and activities that I can’t seem to keep straight or remember when they are happening.  Drew is working on loading this information onto my calendar so that I can freak out even more when I get a reminder that I forgot an event, thanks babe.

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An update on our refrigerator, in case you were wondering, it’s fixed.  We had a power surge as a result of a storm the day before the frig died, which fried the mother board on the back of our refrigerator.  Since when do refrigerators have a mother boards? We paid the repair man for diagnosing the problem and then promptly ordered the part we needed off of Amazon, saving ourselves a few hundred dollars in the process.  What would we do without Amazon?

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Consider yourself sort of informed.  Thanks as always for your love and support, thoughts and prayers, we appreciate them very much.  And now… I am going to bed, tomorrow is going to be a long day.

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