Monday, October 22, 2012


I remembered tonight back to when Emily was first diagnosed.  It only took about a year to get her into a very brief but lovely sort of remission.  I spent all of my free time reading books on Juvenile Arthritis, and when that wasn't enough I found forums.  I remember people talking about connective tissue diseases, but I had no idea what those were, and I pretty much just assumed that they would never apply to us.  It was nice to be so naive.  I lurked on those Yahoo forums for quite some time, marveling at how some people had so much to deal with.  Around the same time I was told that siblings "couldn't" develop JA.

I feel blessed to be so much smarter now than I was back then, but it comes with a high cost.  We all faced head on the fact that Emily couldn't handle regular school anymore.  It was too much of a struggle for her.  She missed so much last year that it wasn't fair to make her go this year.  I wasn't sure that I could handle homeschooling but so far we all enjoy it.  One small victory is that October is almost over and it has passed without spending most of the month inpatient!  The last two October's were spent more in the hospital than home.  Every day we wonder when the next stay will be.  Emily is in a weird state right now.  She has been running around more, meaning that her muscles and joints are doing better, but the throat issues have been more pronounced.  She has been having more trouble swallowing pills, choking almost to the point of vomiting a few times.  And she told us the other night that she feels as though she will not live a long life.  How many ten-year old's have a grasp on mortality?

In the meantime, Zach is definitely breaking through Enbrel.  He has a spot popping up on his chest and another under his waistband.  He's had a small one on his arm, and some scales on his head.  He doesn't seem to be in pain, which is a relief.  For the most part, he's doing pretty well.  But that worries me a bit.  Chances are, it's just a flare because his meds are working anymore.

These are our days.  We cherish the good ones, we worry daily for what is around the corner, and we hope for the best.  There is always something that makes you worry, but we just try to get through day by day.    

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