Friday, May 31, 2013

Today I'm mad.

I've mentioned Wyatt's edema here occasionally and our struggle to find anything to slow it down from accumulating. He receives Lasix routinely multiple times a day, which certainly pulls off more fluid than if we wouldn't use any at all. But clearly, you can see by the pictures, our efforts are not entirely successful. Day to day I often don't notice to what degree he has changed. It's usually when I begin looking back at pictures from a week, a month, 6 months or a year before that I am stunned. The majority of Wyatt's edema accumulates from his thighs up, typically. His feet are a bit swollen, but the largest areas collecting fluid is his belly, his groin and thighs, his chest, hands, face and head. Even his ears are swollen.

Last year- Spring 2012.

In the picture above, from last year, we were already battling the shifting fluid. He was considered clearly "puffy" then. It's amazing how our perspective of "puffy" has so drastically changed in one year.

This year- Spring 2013. (Photo taken a few weeks ago)
I love him the same no matter how much fluid is trapped in his little body. But today I'm mad. It's not fair! To him, to me, to his family, to all the other children and families that have gone through this before us, who are experiencing this now or will at some time. It's just not fair. Mitochondrial disease has changed my son in so many ways, and now even his physical appearance.
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1 comment:

  1. Hoping with all my heart Wyatt is doing better and is comfortable. Wyatt is so handsome regardless! Sending hugs and hope.