First day of school! First day of School! First day of school!

Emily’s first day of school was this week and boy was it rough, on me.  I did not like how it felt to realize she will be depending on others to learn and grow now as well and from me and my husband.  I’m not a big fan of outside influences in the world we live in today.

Aside from how I felt, Emily really seemed to enjoy it.  She even had her teacher reading from Taking Arthritis to School.  We know because we had to interrupt the reading to pick her up for her infusion. 

First day of kindergarten + Actemera infusion = bed time at 5:30 p.m.

I’m still trying to decide if I was more upset about my sweet girl growing up and moving on or because there are so many germs and ways to get hurt at school.  What if someone comes to school with the Chicken Pox or Strep Throat or a cold?  Too many worries.

Her teacher was very nice though and after we discussed our concerns with her suggested we write a note home to all the parents telling them about Emily’s suppressed immune system. We did.  How much of an impact it had we may never know although if Emily does not come down with any viruses this year we will credit the letter with success and try again next year for sure.

Emily does enjoy school, but we can tell it is hard on her.  She comes home exhausted, usually immediately falls asleep and then doesn’t want to go back.  Since she’s been sick she doesn’t like doing things that require a lot of work so school and swimming lessons are on the top of her list right now. We’ve taken it upon ourselves as her parents to push her to work though; it’s part of learning to live with this nasty disease.  Even though she wakes up stiff and in pain she’s got to move past it to live so we are trying to teach her how to cope (warm baths and extra early bed times) and how to suck it up (sometimes life just hurts). 

It’s a learning experience for me.  I hate negative people and believe anything is possible, but trying to instill this belief into a five year old is not very easy, especially when she learned earlier this year that there are things you just can’t do when your body attacks itself, at least you can’t do them until the medicine kicks in.

Our new rule for this school year is every time Emily says “I can’t.” she has to stop and say “I can” five times. We’ll teach her she can even if she doesn’t want us to.

 

Here’s to the rest of the school year being good and Emily getting strong enough to take on first grade.

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.