Waiting is...

tough.  Hell.  Messes with your brain, emotions, insert just about anything there.  Depressing.  SUCKS.

Hopefully some of you readers have found your way over here from Facebook.  Blogger's mobile version is great if your pretty much a smartphone-only type of person.  There is a blogger app for Android; not sure about iPhone.  Anyway, I think I will be writing more here and less on Facebook.  This way I can back-up my entries and save them whereas on Facebook they just roll off into cyberland.  Blogging has been an amazing way to keep a history for our family.  Anyway, thanks for coming over.  Please feel free to click on the "comment button" below and leave us a message, even if you're just saying "I was here."  :-)  We like that.

Back to whining.  Oh wait, that isn't whining.  That's stating our reality now.  This is hard SHIT.  There, I said it and I don't think anyone is surprised.  80+ days on the waiting list.  Seriously?!  Reading my kid's O2 sats at 65 or 72...heck, 88 - the "baseline" the pulmonologist wants her to stay above - still sucks!  In fact, the latest (Monday's) suggestion from that doctor, when I shared how her sats have been has been to limit her activity AND that if her sats start getting worse/staying worse then they'll admit her to the hospital for "respiratory support" until transplant :-(   NOT what we want to hear, but we have to do what's best for Shelby's health.  Yesterday, at the tree farm, she was having fun and moving around a lot, but her sats were 72% - :-O  As long as she was feeling good, we were cranking her O2 and letting her move around, but you can only look at her purple lips for so long...then we had to make her sit.  

I'll be honest and say it.  Not for help, but for those families out there feeling the same way.  Me not working all fall has taken quite the toll on our already tight finances. There's money worry, health/transplant worry, Scott's schooling worry...mix that in with trying to be a "normal" family and parent your child as if everything was "normal" because you know that's best for them when you really want to let them get away with bloody murder....yeah.  Scott and I are having a rough time.  Riley is having a rough time being a pre-teen and trying her best to *deal* with all this.  Shelby, she's still funny and rolls with the punches - so does Avery.  Ahh, for innocence.  Wish I had some.