Steroids

So even through Emily's inflammation numbers still show as "high" on her blood work results all is well and she will be completely off steroids this week yay!

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?

A little bit scary

Today we realized Emily will have completely weaned off her steroids before her next Rheumatology appointment.  That first brought feelings of excitement and relief.  Then I got scared because every time we have tried to come off steroids something horrible has happened.  Then I remind myself that was at the beginning and things have been going very well lately so I take a deep breath and build up my faith a bit.

The truth about it is though that this nasty disease is just all around scary.  Whenever a new SOJIA parent message me on Emily's facebook page I remember all the emotions that go along with suddenly having a very ill child in the family.

Once you come so close to losing a child you realize there is no guarantee on life.  Each new day is a gift that you cherish, but each new change is a little bit scary too.

Sometimes we almost forget...

Since I've been home there have been a few times that I have almost forgotten about SOJIA.  That is a big step in the right direction.  I don't know we'll ever really forget, but watching Emily smile a lot more and just be a happy child and enjoy life is lovely. 

She is noticing her progress as well.  The other day she asked me to watch her jump.  That was her goal for physical therapy; to "jump again" and she was so pleased with herself when she did it.  Last night she wanted to ride her scooter to the play ground.  Usually going to the play ground means we have to push her there and back (a total of two blocks), but last night she rode/walked her scooter the whole way there.

There are just so many things we took for granted before SOJIA.  It's nice to see Emily happy again and enjoying her childhood.  My one wish for her now is to just love life no matter what happens, enjoy being alive and the thrill each new day brings with it.