Sunday, December 12, 2010

Little update....

It's been a crazy busy week, but a pretty good one! 

The big news is that Em seems to be feeling a bit better.  I'm fairly sure that it's because of the latest decrease in Prednisone.  She pointed out the other day that the swelling in her face has gone down enough so that her eye isn't half-shut anymore.  She has laughed more, talked more, & seemed more like herself in the last week.  She did say that her legs are tired again tonight, and statements like that pop up periodically, but I know that with Myositis it's baby steps.  The rash is looking better and she's walking ok, so I guess that's about the best that I can ask for right now.

The chair fitting went ok.  We had discussed this for a while, she seemed to be excited about it.  When the time came she got all upset and wouldn't contribute any ideas to the mix.  I had previously explained that since this was for her I wanted her feedback.  I got nothing but tears and attitude.  She had the choice between 2 transport chairs and a bunch of wheelchairs.  Our PT decided that the transport chair would be better for several reasons.  For one because it has "off road" wheels & we like to camp and be in the woods.  Also because the handles are higher for us to push her, which is helpful because she probably won't be able to wheel herself.  She'll use this often enough even without bad flares, but if she ever gets as bad as she did when she first got bad with the myositis and the first few weeks after meds, she'll need to be in it a lot and there's no way that she'll be able to move herself.  I hope to God that she never has to deal with that again, but since I try hard to be realistic and prepared I know that she will likely have to go through this again.  We just have to stay positive, hope for the best, keep the faith, and prepare for the worst.  Hopefully the chair will move along the insurance rope quickly.  Depending on how they run it, it can be 2 weeks or 2 months.  Grrrrrr!  We shall see.  I have to call them tomorrow.  They sent me paperwork to put it through our regular insurance which I was trying to avoid because of the high copay.  Hopefully it will be soon.  I'll keep posted as I can.

Last little thing- I was very happy a couple of months ago because our pedi gave us a prescription for Zach to stay on the preventative asthma meds through the winter.  I had him on Flovent twice daily because generally this is the time of year that he gets sick.  His asthma flares, he gets infections and then bronchitis.  Well, apparently he hasn't been taking his inhalers.  Little bugger.  His throat is all red, he had a fever this morning, and he sounds bronchial.  It has been a whole week since we've been at the pedi's office...  Sigh.  God made him extra cute so we don't kill him.  He is a very blessed, beautiful boy.  !!!

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