To talk or not to talk

One thing we have struggled with is when to discuss different aspects of this nasty disease with Emily.  She's only five years old so it can be a lot to take in that young, but when you have to spend 57 days in the hospital and hear announcements like "code blue room xyz" topics like life and death tend to come up.

At one point Emily decided she would not take any more medicine.  We were still in the hospital and she just decided she was done.  It was at that point we had to sit down and explain the very nature of her arthritis and how the medicine was saving her life.  20 years ago MAS killed and doctors couldn't explain it.  30 years ago SOJIA was called Rheumatic fever and baby Aspirin was the only regimen.  Those children who didn't lose the battle then grew up in wheel chairs and I've watched as some of them have lost their battles as adults.

We found because this was happening to Emily she needed to talk about it.  She needed to understand it was a very serious matter and so it helped put things in perspective for her.  She still doesn't understand it all, but when she introduces herself to another child she will say, "I'm Emily and I have arthritis." Because it is a part of her life now and will be forever.  She is learning to live with it and live around it.

Because talking helps we look for ways to encourage that conversation.  Emily has a drawer filled with medical play items and she enjoys watching Doc McStuffins, a Disney show about a child playing doctor.  We've found it especially helps to talk about other children going through similar experiences.  We met a dog the other day with only three legs and so I made a point to talk to her about how brave the dog must have been to go into the dog hospital and how he had to get shots and IVs too.

Since we may have to re-introduce nightly injections the point of talking about it has come up once again in our lives.  Emily is not happy about the possibility, but she knows it may happen.  We talk about it once and then don't worry about it.  She knows and if it happens we will revisit the discussion and importance of them.  We will also have to explain why the infusions didn't work which will be harder, but we'll figure it out.

Lately Emily has been mimicking Doc McStuffins and even has a door sign to show when she "doc" is in or out.  I think Emily would make an amazing doctor someday, she would be able to relate to her patients and I even told her perhaps she could be the one to cure arthritis in children.

The "doc" is in:

The "doc" is out:

When the child is living the trauma talking is very important.

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.

No exceptions!

After Emily was officially diagnosed with Arthritis I started looking into swim lessons.  The Arthritis Foundations recommends swimming as a great exercise for your joints and so I figured if I could bother Emily and her brother deep into swimming early perhaps it would stick with them.  At the very least they would know how to if they decided that was their exercise of choice.

Once she was out of the hospital I began looking for programs.  Anything private or semi-private was out of our budget so I turned to the YMCA.  It's still $50 per child for only four lessons, but that's better then $180.  Emily's brother is at risk for JIA in general because it's probably genetic and he is our child too; besides that we aren't going to leave him out so that doubles the cost of us.  I've tried teaching them on my own, but I don't have access to a warm indoor pool and we all get cold easily in the outdoor pools here so it becomes cold and unpleasant very quickly.

Anyways, I called the local YMCA to see about signing up Emily for some lessons.  The ones for her age group were without parents in the pool and since Emily is still pretty weak I knew she'd need some extra help so I figured it was as simple as telling our story and getting permission to be in the class with her.  No.  It's not allowed. No exceptions.  Not only that, but the Tai Chi class the YMCA has that is sponsored by the Arthritis Foundation is not for anyone under 15.  No exceptions.  In fact the YMCA made absolutely no exceptions at all.  I couldn't get a manager to call me back to talk to me and the only class I could get into the water with Emily was the infant class.  At first I figured that would work out because her brother is only two and would be in it with me, but we ended up paying $100 for one lesson for just Emily where she was completely ignored by the instructor.  It was horrible.

First, Emily was sick with a cold for the first two classes.  I can’t risk getting her sicker when she has a suppressed immune system.  So I thought perhaps they would understand our situation and allow us to reschedule for another class.  No, no exceptions.  Then it turned out the class was during a holiday weekend so there went another class, they just canceled it.  Finally we made it to the last class and it was an epic failure.  Emily's brother refused to even get into his swim suit.  I paid $50 for him to watch class and another $50 for the instructor to ignore Emily.

Emily and I got into the water a little early to try to get her warmed up.  Anyone with arthritis or joint problems knows warming up is important.  Not at the YMCA, that is not allowed.  No exceptions. We had to get out of the pool and wait five minutes for class to begin, wet and cold. Finally class begins and the instructor comes around to each child.  I tried to explain to her why Emily was a five year old in an infant class, all I managed to get in was that Emily has arthritis and is not as strong as other kids her age.  The teacher took Emily from me, sung the ABCs to her, returned Emily to me and then ignore Emily the rest of the class.  Leaving me to try and get Emily to do the kicking and bubbling on my own.  She skipped us each and every time she went around the class after that.  Finally Emily was not enjoying herself and I was beside myself with disgust so we got out and left.  I didn't even change out of my swim suit.  It was a horrible experience to realize that even though you ask for help and seek out things that will help your child there are places where there are no exceptions.

Unconventional

I want to get one of these for Emily.  There are actually two types of specially trained dogs that I believe would really help her.  One is a service dog to help her move around and pick things up from the ground, the other is a therapy dog which would be her constant companion, especially during the injections, and would be trained to obey her and go with her to the playground to play.

They cost a lot of money and apparently juvenile arthritis is not debilitating enough to qualify for help in getting one.  I haven't given up yet though.  One organization told me she qualifies, but we'd have to raise the funds for them.  Not ideal with working full-time, one sick child and one going through the terrible-twos adding something else to my schedule doesn't seem like it would work either.  We'll have to talk about it some more.

So far the only other thing that helps Emily is the water therapy which of course we pay for ourselves because insurance doesn't cover unconventional things like that or therapy dogs.  Oh, but they would cover a thousand dollar stroller/wheelchair.  Let's not get her up and moving, let's confine her. 

On a positive note, Emily went back to her dance class yesterday.  I was of course very worried it would be an epic failure.  All that movement, especially the up and down, I was afraid it might discourage instead of encourage.  She really wanted to though and my husband and I have said from the beginning of all this that we would not limit her, she would have to set her own limits.  So we took her, I went in the class for the first half (all in uniform and everything), because she was anxious and I was not going to let the very perky teacher brush her off.  After the first 30 minutes the teacher could see what her limitations were and Emily seemed to be more comfortable so I left to watch from the door (plus they changed from their tap shoes to their ballet slippers-tap shoes are very slippery and I didn't want any broken bones).  Emily seemed to really enjoy it.  She tried everything, even just a little except for the jumping, and even did a forward roll with a lot of help from the teacher.  She also got down and laid on her belly which she refused to do in PT.  So I was happy about that.  Of course afterward she is exhausted so we took it easy the rest of the day, but I was happy to see her enjoy herself.

I hope to make a lot of progress this next month because I will be leaving for two months for work again very soon and don't know how much progress if any will be made while I am gone.  Derek is great with the kids, but Emily get's really upset when I leave and with this nasty disease I don't expect she will be willing to do much more then wait for me to get home.