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.

smaller battles

Emily's tootsy

One of the scariest aspects of SOJIA is that the medicine controlling it also suppresses Emily's immune system.  I read posts and blogs of different families dealing with this and there is always one thing that plagues the child.  Emily has been battling ingrown toenails.  This will be her second case of both big toes getting infected.  Normally you could just wait it out, but with a weak immune system she goes right on antibiotics and if those don't work they increase the dose.  After two weeks we're now going to go to a pediatric podiatrist to see what they can do.  There are lots of small battles to fight with SOJIA.

Infusion Time

When Emily was originally in the hospital for SOJIA it was difficult for her to deal with.  As you can imagine the emotional toll we all paid was very high, but Emily's more so then any of us.  Every once and a while during those 60 days I would try to cheer her up and encourage her to get up and move with a visit to the gift shop. 

Shopping therapy. 

On one trip Emily picked out this tiny little ladybug, so cute, but so easily lost.  Her original one did get lost so for her infusion today daddy took her back to the gift shop and she picked out two cute little guys to replace the first one.  Her request was for a ladybug and a turtle.

We believe it's the tiny things that make a big difference.  We want her to love life and so when she wants to replace her tiny lost ladybug we do our best to make that happen.  Life is great, even with SOJIA, and we want her to believe that too.

Parenting at a distance

You may or may not know it, but when Emily first got sick I was on the other side of the world for work.  It was difficult for me to hear she was sick and not getting better.  I'm sure it was scary for my husband who was the one at home dealing with it all, but not being there, having absolutely no control and not even being able to ask the doctors all the questions I had was so hard.  Then when things took a turn for the worse my work rushed me home.  That 13 hour flight was the worst because at least when I was in the office I could get a call from my husband if there was a change, but on the flight there were no phones and for 13 hours I honestly worried that I may have held Emily for the last time months ago and didn't even known it.

I'm gone again for work and being away is surreal.  All of my work items where packed away after I rushed home the last time and still have things the way I had left them.  The book I was reading when Emily got sick still had the sticky note with the nurse's email from her first hospital; my digital picture frame has photos all pre-SOJIA.  It's almost like SOJIA was a bad dream and I just woke up back in the office, although it's a new office and this time I am only a six hour flight away, but sometimes I have to remind myself it really did happen.

It's another dimension to all of this, not bad, just different.  So this is why I have not been posting on Tuesday and Thursday; I am parenting at a distance which consists of lost of wishful thinking and updates from my husband. At least this time there is no fever and there is no rash.

Parenting at a distance

You may or may not know it, but when Emily first got sick I was on the other side of the world for work.  It was difficult for me to hear she was sick and not getting better.  I'm sure it was scary for my husband who was the one at home dealing with it all, but not being there, having absolutely no control and not even being able to ask the doctors all the questions I had was so hard.  Then when things took a turn for the worse my work rushed me home.  That 13 hour flight was the worst because at least when I was in the office I could get a call from my husband if there was a change, but on the flight there were no phones and for 13 hours I honestly worried that I may have held Emily for the last time months ago and didn't even known it.

I'm gone again for work and being away is surreal.  All of my work items where packed away after I rushed home the last time and still have things the way I had left them.  The book I was reading when Emily got sick still had the sticky note with the nurse's email from her first hospital; my digital picture frame has photos all pre-SOJIA.  It's almost like SOJIA was a bad dream and I just woke up back in the office, although it's a new office and this time I am only a six hour flight away, but sometimes I have to remind myself it really did happen.

It's another dimension to all of this, not bad, just different.  So this is why I have not been posting on Tuesday and Thursday; I am parenting at a distance which consists of lost of wishful thinking and updates from my husband. At least this time there is no fever and there is no rash.