Tuesday, May 8, 2012

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.

1 comment:

  1. I came across your facebook page for Emily today and came over here to read your blog. I'm 36 and have had RA for almost 7 years. I have a friend whose little girl developed JIA after her 1 year immunizations. I have utmost respect for you parents who have children with autoimmune diseases. I wouldn't wish this mess on anyone...much less a child. Since it seems that my family on both my mom and dad's sides have some history of RA, I'm constantly worried when my son mentions that something is achy. (Of course, considering the fact that he has grown 4 inches and gained 10 lbs in the past 7 months, I shouldn't be surprised that he has had some growing pains. Still makes my heart skip a beat, though.)

    Sending all of you good thoughts and well wishes...and lots of prayers.

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