Monday, April 30, 2012

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.

Thursday, April 26, 2012

Medical Play


To help Emily cope with the painful injections and frequent doctor appointments we do a lot of medical play.  We learned about this in the hospital.  Child Life teachers (Ms. Cathy and Ms. Kellie) at Rady Children's worked close with us from the beginning and they were amazing.

So anytime Emily starts talking about this nasty disease or the hospital or doctor or even someone else she hears about being sick we encourage the discussion.  I'm a big believer in talking, calmly, about things that bother us. 

Emily knows then it's "time for the needle" so last night when we pulled out the Kineret to get it to room temperature (the company says to let it sit for 90 minuets to help with the stinging) we offered to let Emily give shots to an orange.  We have some extra ones we can't use and some saline so Emily and daddy filled up the syringe and doctored that orange right up. 

While she does that we talk about why the orange needs a shot every day and how it helps the orange feel better and then we talk about how this injection helps Emily and how the medicine, doctors and time in the hospital saved her life.  She still screams because shots hurt, but she holds still for us without us holding her down.  That is a big thing for such a young girl.

Wednesday, April 25, 2012

My list

I now have a list of things that increasingly frustrate me.

Never say to a JIA parent:
1. It's just arthritis.  - Are you freaking kidding me?  My daughter can barely walk, can't go up steps and can't get up after sitting on the floor.  It is not "just" Arthritis.  It is an Autoimmune Disease that is devastating my child's entire body.

2. It's not a disability. - See above.

3.  She's perfectly normal. - See above.

4. Oh, so she has osteoarthritis.  No, no she does  not.  If you are confused google Still's Disease, that's an AKA for this nasty disease and will possible explain things better to you.

5. Have you tried probiotics? - I can't even think of a neutral response for this one so I kept my mouth closed.  There is no cure for Juvenile Arthritis of any variety, do not give helpful tips to parents who know more about this disease then most doctors. If there was anything that could help I gaurantee I would be investing in stock in the company that made that wonder drug.

Never do:
1. Stare. - Why do people, especially adults, insist on staring at my sweet girl.  Yesterday, after leaving the doctor's office, Emily was discussing her disease and this elderly woman heard our coversation and bagan gauking at my daughter.  Serriously this woman followed us through the parking lot staring until we went our seperate was.

Tuesday, April 24, 2012

Super Tantrums

My goal with this blog is to tell the whole story.  Each child's story with JIA is different and SJIA is even more different.  I tell my husband that Arthritis should not be the name for this, just a symptom.

My daughter has been taking prednisone, a steroid, to control the inflammation, and I hate it.  Yesterday when she woke up I could see the puffiness in her face had increased dramatically and then there was the grumpiness.  I am reminded of the book Alexander and the Terrible, Horrible, No Good Very Bad Day. Only in this version I watch it play out in my daughter's life and I have no idea how to help. 

My husband and I talk to her about how the medicine can make her feel angry, but that doesn't make it ok to kick and scream and throw and all out fit.  In the hospital I came up with the phrase, super tantrum, because that is what they are.  Can you imagine your child screaming for you to go away, for everyone to just leave her alone for four hours?  It is a horrible experience. 

We use a sticker chart and reward system now that we are home.  With nine stickers she can earn a trip to the History Museum, Science Museum, time to color some hard boiled eggs (a favorite activity) or an ice cream from the ice cream truck.  She has options to save up and get other stuff like mail-order lady bugs (yes they have them), but she loves to spend her stickers as soon as she saves them up.  Right now she can earn up to three a day one for no tantrum in 24 hours, one for holding still during her injection (she gets it no matter what because sitting for a painful injection is hard for anyone let alone a five year old) and then if she does some excersises she can earn one more.

This is a nasty disease.

Friday, April 20, 2012

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.

Thursday, April 19, 2012

Systemic Onset Juvenile Idiopathic Arthritis

On March 2nd, 2012 a simple name turned our world upside down.  Our sweet five year old went from happy, healthy and active

to this:

Systemic Onset Juvenile Idiopathic Arthritis was the diagnosis.  This after four weeks of fever and rash that included two weeks in a hospital admitted for "fever of unknown origin". 

She never complained of any joint pain.  She had never been in the hospital (except when she was born) before and we had never had such an ill child to care for.

In all she was in the hospital for 57 days.  Spent two weeks of that in the Intensive Care Unit, received 11 x-rays, 6 ultrasounds, a PET CT scan, a spinal tap, a bone marrow biopsy, daily blood tests for one month, four IVs, had a PICC line placed, wore a NG tube for two days, underwent one blood transfusion and left the hospital with four new medications one of which is a daily, painful, subdermal injection.

As a parent there is no way to prepare.  This does not run in either extended family.  This is not cancer.  There is no cure.

Before SOJIA my daughter loved going to the playground.  Yesterday I took her to the playground after being out of the hospital for a week.  I thought watching other children play would motivate her to play.  She couldn't climb up the stairs to the slide.  She could barely peddle the tricycle around and couldn't do it without help.  She spent most of her time in the infant swing watching other children play.  I don't know if she yearned to play with them, but I know I yearned for her to play with them.

Systemic Onset Juvenile Idiopathic Arthritis
AKA: Still's Disease
AKA: Juvenile Rhumetoid Arthritis 
Three names that mean the same to us a future forever changed.

Thank you for visiting our story.  We hope to raise awareness about this and look forward to a cure someday.