That Day or Hour

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  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

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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 […]

Veronica

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We drew bloodwork today in preparation for Mayo next week.  It was awful.  Cee’s anxiety level was through the roof, and she screamed through the whole procedure. The nurse called me with a few of the results.  Today Cee’s  inflammation level is 4x higher than the last levels that David and I remember.   The nurse was sympathetic and mentioned that that was […]

The "Truths" of JIA

I may have paraphrased a little, but these are some of the actual “truths” we have been told by professionals, that is, people with specialized training, regarding Cee’s situation. -Mayo  isn’t as great as everyone thinks.  The people in Rochester choose to go to the local hospital instead of Mayo.  That says something. -Mayo is the […]

As Cee excused herself from the dinner table to go to the bathroom, David and I watched her hobble slowly down the hallway.  “When did this become normal?”  David asked defeatedly. Normal these days is having an almost-five-year-old who doesn’t dress herself.  Who sometimes needs help holding a cup.  Who doesn’t like to be hugged or […]

Taco Glump

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***From our July 2, 2013 Journal Archives*** Cee continues to struggle with pain.  The back of her head/neck area and her leg seem to be the main areas lately.  She wakes up stiff, gets better throughout the day, and then mid-afternoon she starts having pain again.  This is the pattern she was in before Mayo, and […]

Yesterday was not completely terrible, and today looks like it might be not terrible as well. “Not terrible” is the new “good.” Cee ate.  (She didn’t eat any vegetables, and she may have had eggs for all three meals, but they were bright yellow yolk eggs from my aunt’s farm.  Lots of nutrition there.) Cee played.  (Early […]

Cee had some good moments yesterday.  We went to the magician hosted by the library.  My sister brought over some kazoos (which the girls love, love, love!). But other than that, things continue to unravel.  Cee picked at her food all day.  She doesn’t want to go to the bathroom.  Apparently she didn’t get the memo […]

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I believe this all started on Monday…so tomorrow marks a week of the flare up.  I don’t know how long they typically last.  As far as the bigger picture, this all started on January 20th.  So this weekend marks five months.  Five months. Cee’s pain level is increasing.  Although there are some brief times where she’s […]