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SQT:  A Television from Heaven and the Best "B" Word Ever

  Seven Quick Takes 1.  An Addition to ERA Preschool I’ve posted before that Moe’s only school goal for the year is to avoid the emergency room.  Aside from that, anything goes.  But this week he started asking to do school “with paper” like the older girls.  So we started.  I don’t really care if […]

Pre-Advent Prep: The List

  This is going to sound crazy.  I try to be all ready for Christmas before Thanksgiving. Advent starts on November 27th this year.  That means by November 27th, I actually want to have all my critical prep work done.  It makes November a bit crammed– but it pays off once December rolls around.   In […]

Immunosuppressants: A Voter's Guide

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or Be Careful What You Wish For   Sorry, America. I remember wishing people would understand how difficult it is to parent a child who needs terrifying treatments to survive…   Imagine yourself in this situation:  Your young daughter has a chronic illness and is in a lot of pain.  It’s time for a medication shift. […]

JEI {2}:  Back to School

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Welcome to the weekly link up, Just Enough Info (JEI).  The internets can be a great source of community, and I’d love to get to know you better!  Feel free to share your answers in the comments or link up if you have a blog.  You can see our first link up here.   This week’s topic […]

Jennifer Garner Plays Me

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  Have you seen the previews for the movie “Miracles from Heaven?”  I saw one, and it looks like Jennifer Garner plays me in it.  Okay, she actually plays a woman named Christy Beam, but there are some similarities in our lives: a daughter’s terrifying, sudden-onset illness.  A million questions.  No answers.  A crisis of faith.  Hope. […]

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On Friday we drove up with the kids to Rochester for Cee’s first followup appointment with our rheumatologist. Cee’s pain level is much lower than it has been, but she still has migrating joint pain.  It lasts in a certain joint for 2 days or so before moving to another joint.  She does have a rash that […]

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For the first time in…weeks? months? Elle convinced Cee to play babies.  As they tucked in their little dollies, there was no mention of doctor appointments, blood work, or medicine.  Just blankets and naps and all those things Cee hasn’t thought about in a long time. And it made me smile. Sure, she only played for a few […]

…because it made me paranoid. I’ve got enough regular stuff to worry about without being concerned that: -The hospital will have an outbreak of Ebola, and we’ll be put under lockdown. -I’ll go to the bathroom and Cee will go from fine to cardiac arrest. -Cee’s condition will be stable, but during a routine test David […]