My Grandbunnies

,

I asked Elle to describe a drawing she was working on diligently. Elle:  (proudly) These are my kids. Me: Oh!  How nice.  How many kids do you have? Elle:  Seven. Me:  What are their names? Elle:  Flopsy, Mopsy, Cottontail…(big pause)…Mrs. Rabbit…Lucy… (she trails off, unable to name the remaining two)   Oh dear.  I think […]

First Communion

,

Today was a big day, because Cee received her First Communion!  It was a happy, happy day. Cee looked beautiful, and she was so excited to receive Jesus. Whew.  We didn’t know if we would make it to this point.  There were times we honest-to-goodness didn’t know if Cee would make it to ANY of the milestones we […]

Jennifer Garner Plays Me

,

  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. […]

Diligence

, ,

Moe has been diagnosed with hand, foot, and mouth disease. It’s a viral, common, childhood illness, and there’s not anything we can do but ride out the next week or so. “Diligent handwashing” is the only recommendation.  Though I’m not sure that my hands, dry and chapped from the perpetual washing, will make any difference.  As I […]

2016 Winter Update

We just returned from our most recent up and back trip to Mayo.  They’re more cost and time effective than staying over night, but man – – those up and backs are exhausting.  Nothing like sitting for 7 hours to take it out of you. Cee’s arthritis is quieting down.  She’s gotten rid of almost […]

Holding Steady

We’re holding steady.  Cee’s mild pain has stayed about the same.  Sometimes her left hip hurts.  Sometimes it’s her right hip.  Sometimes it’s neither, and sometimes it’s both.  Overall it’s not impacting things too much.  We watch and wait.   “Holding steady” might just be a euphemism for “trying not to fall apart.” Cee has been on oral steroids for […]

The Worst Book Ever:  A Review

Cee asked me a few times throughout the day if it looked like she was limping.  It did, but I gave some noncommittal answer.  I asked if anything hurt, and she said that it feels the way it does before a flare.  Primarily it’s her hip. I knew that something was coming, but I didn’t really […]

That Day or Hour

, , ,

  Cee is at the hospital with David getting her most recent infusion.  She still has that lingering cough, but the rheumatologist said to go ahead with the infusion as scheduled.  So we did.  We can’t risk putting it off indefinitely because of one isolated symptom.  Infusions have become pretty routine, but the cough throws a wrench […]

Being Challenged

, ,

Today Cee can sit up.  That’s an improvement from yesterday when she couldn’t do anything but lay.  We can all use a breather from the constant pain.  She still can’t walk, but we’ll take every grace that comes, even if it’s small.  She’s been able to color, read books, and play from her place on the […]

Searching for The Answer

Cee is unable to walk, stand, or roll over without intense pain.  She wakes up crying multiple times throughout the night.  And this is with the meds she’s already on.  She spends all her time on the couch or in bed, unless we’re going to swim therapy.  There is much wailing and gnashing of teeth to […]