Thursday, June 7, 2012

So much happening!

Oh yes, there is a lot happening.  Where to begin?

As I mentioned previously, we now have an advocate working for us.  She was hired by our insurance company.  Crazy, eh?  I am so relieved.  She told me the other day that her job is to make my life easier and to help us to have less stress.  So far she has helped to get Orencia approved, or at least make the hospital aware that they had it wrong and it was approved in the first place!  And she has managed to get us a hospital bed coming!  I have said before that Emily likes to sleep almost sitting up.  She is more comfortable in a hospital bed than she is at home.  She really wanted a Tempra-pedic mattress, and insurance doesn't cover those, but they assure me that this bed will be comfortable.  She is so excited!  It should be here Tuesday.

Monday we went to the Opthamologist for Emily.  She had told the doctor at our last visit six months ago that she was having trouble seeing the blackboard.  He said that her vision was perfect.  Perhaps it was.  Right now it's 20/30.  We should have her new glasses in the next day or two.  She's actually excited about that.  LOL!  She's so darn cute.

She's been losing a LOT of steroid weight by the looks of it.  We don't really notice it, but certain things jump out at you.  For instance, her pants were all a little tight on her a month or two ago.  I noticed yesterday that she's rolling the top of her pants over now, and she still has to pull them up often.  I had to remind her that I made sure to buy only adjustable waist banded pants.  :)  It's nice to have a visual to show us that it's really changing.  She's been looking really good the past couple of weeks.  She has some color, she's been dancing around, and tonight she was singing in her room for about an hour.  It makes my heart smile.

Both kids are extremely excited to be on summer vacation!  In some ways I wish that I had waited until fall to start school myself.  I wish that I could be home enjoying them more, rather than spending almost every second working.  Every once in a while I take a "CityVille" break.  Mindlessly clicking helps to clear up the fuzziness of the mind.  I really wish that I had realized that summer courses are half of the time that regular sessions are, with all of the same work.  I would have kept my English Composition class, but maybe not have done any math.  Math has always been my nemesis, and while I actually rather enjoy many aspects of it now, learning new concepts is just as frustrating as it was years ago.  Thankfully, I am more determined now.  I need every extra second that I can get to study.  I keep telling myself that I am doing this for the kids.  I so love them!

The last crazy thing is that our first ever new car (which is old now) toasted- on my first full official day of part-time working status.  /Sigh.  It's a Toyota.  I bought Toyota because they don't break.  I love Toyota, and I always have.  The darn transmission went.  Tranny's never go bad in Toyota!  Or at least not often.  There went a whole bunch of money that we didn't really have.  At least we were able to handle it.  Thankfully, we have a Scout friend that has a repair shop and Kevin has helped him in the past.  We now owe him BIG TIME!!!  He let Kevin bring the car there, and then he even helped Kevin all of Tuesday work on it, and lent him his own car to use until ours is running again.  Thank you so much, Ray!!!  If we had to take this in to someone it would likely be around $2,000 in work.  We are looking at probably about $1000.  It sucks that it had to happen but again... the blessings that we receive....  It's amazing sometimes seeing how God works.  We are so blessed.  

Lastly, we have so JA families that are really struggling badly.  I don't have permission to name them but there are two in Florida alone that really need prayers.  JA affects so much more than just joints.  One girl has vasculitis in her brain- swelling in her brain.  Please pray for these families.  We have friends in NY struggling, in NM, in CA...  So many kids that have it so hard.  Please pray fo them.  

 And it is so past my bedtime.  Until next time...