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.

A little cold

Our poor Emily has come down with a little cold.  That's not a good thing in my book and while I hope it stays little I am also worried.

It leaves me feeling like life isn't fair.  Yesterday at church, we were sitting next to another family and after about 20 minuets the mom turned to me and asked me to teach her Sunday School class because she was very sick and couldn't.  I couldn't say yes.  All I could say was that I was sorry, but my daughter has a suppressed immune system and not only could I not help with her class (because I had already promised to check in on Emily in her class often to ease her anxiety about going), I had to also ask her please to not be offended but I was going to have to move to the other foyer.  Now I am worried that by staying and trying to allow my child some spiritual learning I endangered her.  If only sick people would just stay home.  I mean she would have missed one Sunday.  A simple cold could lead to pneumonia and a hospital visit for Emily which means multiple Sundays missed.  It's not fair.  I wish other people realized how much of an impact they can have on other people's lives.

Now let's worry about kindergarten next year.  How about that parent who just can't miss a day of work (I've worked with them) for a sick kid so the kid goes to school and then instead of that parent taking one day off my daughter now has to stay home multiple days or worse go back to the hospital.

It's just not fair in my book.

Afraid

This is what we fear now.  The drugs our daughter is on suppresses her immune system. 

So when our son started vomiting I got scared.  What if his sister catches it?  Oh please no, no more hospitals for this sweet girl.

Then I felt guilty.  My son is very sick, needs me and I am worrying about my daughter instead.

He's feeling much better today. 

That's brings to mind another difficulty with this nasty disease.  My two year old is ten times more active then my five year old.  We like to go to the local history museum and when we do my five year old is the one in the stroller and my two year old is the one who is all over the place.  I am usually chasing him while pushing the stroller.

We can usually convince her to get out and walk around a bit, but not for long and all to frequently she will try to bend down and just collapse.  I can see it in her eyes, she doesn't understand why she can't bend down any more and I don't know how to get her strength back up.  We're pushing for PT, let's hope the insurance will cover it.