Sunday, December 26, 2010

Best Christmas Ever!

Well, Christmas has come and gone.  I was really not in the spirit a week ago.  So much has happened this year.  It’s really hard to believe how much has happened.  One year ago Emily was still laughing & running around in her “old” body.  We had no sign of what was to come.  She was tackling her brother and chasing him around the house.  Now she yells at him a lot, sounds different, looks different, smells different, and acts differently than she did before the steroids puffed her all out.  On the bright side, she is walking.  If not for the steroids, she wouldn't be.  For that I am grateful, and blessed.  However, we had been trying to find ways to draw out her “old” personality, to make her happy again.  Well.........

So, I was sick for Christmas.  So sad?  Not so much.  I needed to get sick, needed the break and the excuse to just SLEEP!  Instead of cooking a feast like I had planned on, I slept on & off  and listened to the kids playing.  It's so funny to hear the 3 of them together sometimes.  Oh, the conversations they have!  Serious conversation on Pokemon, Rapunzel & fairies.  They had a great holiday.  From going over to their great-aunt Pat’s house and hanging with family to being home and just enjoying all of their new toys, Wii & DS games & movies.  Who can ask for more than hanging out with family?   Thanks to my picture posting on Facebook, Aunt Pat knew to warn those that don’t follow Facebook.  No one had that look of shock when they saw Em and everyone acted like all was normal there.  And I got my wish.  While laying in my bed snuggling with my blanket, trying to wake up, listening to the wind howling outside, and then rain, I heard Emily in hysterics.  I hadn’t heard that wonderful noise in a while.  At least, not like this.  This was full-blown happy laughter.  I had really, really missed that.   I’m not sure what it is- maybe the magic of Christmas, maybe the decrease in Prednisone, maybe the blood pressure medicine that she’s on now- I dunno.  What I do know is that she seems to be getting a little bit back to herself.   While she didn’t get everything that she wanted (I couldn’t find the Holiday Barbie, but that was pretty much it) she got almost everything.  No one cared that we didn’t have a feast.  In fact, everyone was very happy to have my leftover homemade chicken soup!  It was a beautiful day of relaxing with family and enjoying the togetherness.

And the Procardia is working!  That is the medicine that she is now on to help control the Raynaud’s and lower her blood pressure from the Prednisone.  Every time that I touch her hands they are warm.  That is so damn cool!!!  It is a huge relief.  Maybe I won't have to panic through the next freeze, wondering if she'll get frostbite at school again.  Maybe she'll be able to go out of the house in the summer in shorts!  Or swim in a pool without turning purple and hurting too much!  Maybe it will keep the Raynaud's at bay, though if it starts up again, we have a TON of mittens, thanks to our thoughtful Secret Santa!

I could be wrong, & maybe I shouldn’t even wonder, but I believe it had to be from the school.  Some of the things that we were given were just too perfect.  And that makes my heart melt even more, because we didn’t even ask.  I know that if we asked they would have given us a few things, but we didn’t even and yet they still felt compelled to “spoil” us.  It is no secret that I love our school.  Em & Zach both have had some AWESOME teachers & aides, I love the nurse and clinic staff, as well as the guidance & ESE departments.   I think the new principal is amazing, which I’m sure of because the staff as a whole is so much happier since she took over, and their grades have gone up.  But I never expected this.  Ok, so maybe I’m wrong.  Somehow, I don’t think so.  Whether I am or not, we are all so grateful.  We needed something good to happen, some good news!  I try so hard to always have a positive outlook.  I try to take everything in stride, but there are times when it’s just very hard.  Now I have even more to think back on and smile about when things are going wrong.  Thank you again, our wonderful Secret Santa.     


  1. Im so so so sooooooo glad that things are improving.. that the procardia seems to be awesome so far!! I hope this is improving Em's mood! She has warm hands for a change! I mean.. wwo.... something to represent her warm heart!! Maybe being accepted with her family and not stared at went along way too!!! I'm so glad that you got to rest. you have SO needed it. I knew you were bummed about getting sick but I thought to myself... the body is telling you... U Must Rest! and You DID and enjoyed all of the sound effects!! :) Nice to have family!! Def!!!

    I hope Em continues to improve and decrease on the predator zone. and so wonderful about the wonderful secret santa spoiled surprises! How delightful!!!

    <3 <3 <3

  2. SO happy that y'all had such a good Christmas! This warmed my heart and brought me goosebumps :) Are we going to get to see you and Em at the conference in July?

  3. <3 ya's!

    Sooo right, Izzie. All around. Now I need to get my vitamin B up and I'll be all good :)

    Amy- I hope to be at the conference one way or another, but we'll see. It will for sure depend on whether we can get a scholarship or not. I can't be as active with the AF as I'd like cuz I'm about an hour away from their office and usually when they'd need me I'm at work. Or the doctor's. Here's hoping!