Wednesday, November 3, 2010

Appointment tomorrow & probable overnight stay

It's been an eventful week!  To sum up briefly, Emily went back to school on Halloween because she felt she was ready.  We weren't so sure, but we have to trust her judgment so we let her go.  She did GREAT!   She went out trick-or-treating, took it easier over the weekend, and she's gone to school the last two days.  We even had a day where she told me "Mommy, I had NO PAIN TODAY"!!!!!  I've never, ever heard that before!!!  I was thrilled to hear that.  She's really doing very, very well.  I can't believe how quickly she has bounced back.  That child amazes me every day. 

So, tomorrow is her 2 week check-up.  I made it for two weeks from hospital discharge.  I'm hoping that they'll say "Oh, she's doing great!  No need for an overnight stay."  However, she does still have active rash, and as long as there is active rash, there will be active disease.  I've packed a bag- just in case we have to stay.   I'm assuming they'll want to do another Solu-Medrol drip.  I'm hoping for another IVIg, but it may be too soon for that.  I really can't wait to get her off of the steroids.  She's all itchy, bloating badly, and miserable from them.  She doesn't like how different she looks right now, and people don't help by mentioning it.  She just doesn't want to talk about it.  It's heartbreaking for us, too.  She just looks unhealthy right now.  I know that she needs them to defeat this disease, and that once she's better she can stop them, and then get back to normal.  Until then, however, she is stuck with it.  I wish there was a different way; as much of a fan as I am of steroids for short spurts of time, I'm not thrilled about long-term use.  At all. 

Here is my current favorite picture of her.  The only bummer is the red eyes.  That redness is the active rash of the JDM.  Otherwise, she looks beautiful, happy & spunky!  :) 

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