I thought I would take the time to show you how much the steroids have impacted Emily's appearance. For a five year old that's a big thing. She has asked me if she will ever look the way she did before getting sick and I hope the swelling goes away, but we just don't know. Steroids are a life saver of an SOJIA child. They work fast and well so we very well may have to use them again sometime in the future.
April 22, 2012 (Emily was diagnosed in March 2012) so this is right after her discharge from the hospital
May 6, 2012
June 6, 2012
The Mormon Battalion is a free place Emily loves to visit (panning for gold is a favorite) and we always get a picture when we go there so this shows how much she changed in two months. Weight wise she was discharged at 30lbs (about the 15% percentile) and by June she was 50lbs. She nearly doubled her weight in two months; I can't imagine. Even after nine months of pregnancy I have never doubled my weight and to have done it only two months. Clothes size she went from a 4T to a 10.
The good news is that she has started losing weight. It's coming off slowly, but we've been told that is normal as her activity level increases and her appetite and the steroids go down. She's now only 48lbs and in a size 6 and definitely more active.
I'll do another post like this is a few months to show how coming off steroids effects her as well. That's one question I had when this all started; will the steroids changes be permanent?
Great news! Glad she's getting more active and is happy again. I did think that she looked like she lost weight in recent pics. Love, Tiff
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