The latest on Presley...

First I want to thank Heather for the last update, I just couldn't find it in me to sit and write one.

Furthermore, I want to apologize for not returning the texts, phone calls and emails I have received from several of you amazing friends out there in blog land.
I admit to going in 'shut down' mode when things get tough...
as Mike fielded calls from my parents and sisters last week, he finally said to me
"I totally get you don't want to talk, but don't you think you should at least call your family?!?!"
Pretty crappy of me, huh?
So again, I am sorry....your reaching out means the world to me.

As for the butterfly...
well, I have decided she needs to be a contestant on 'Dancing with the stars',
as she does a great 'two steps forward, one step back' routine!
Since my last post we have done just that in the areas of fluid retention, blood pressure, and oxygenation.
She has had 'good' days
but even more 'not much has changed' days ,
I am waiting for some 'REALLY AWESOME' days to fall in the line up.
We have gone back on the traditional ventilator this morning and she is tolerating that nicely.
However, her current ventilator settings do not indicate her being weaned off in the next few days.
But the fact that we made this transition nicely pleases me enough for now...
"slow and steady"
hasn't someone we all know and love repeated that to us enough times that we have no choice but to believe it!!

It is surreal to be dealing with all of this again.
I can certainly tell you it is far tougher this time around.
When Presley was struggling the first 7 months of her life in the hospital, she was never truly ours.
We had always shared her with doctors and nurses and surgeons.

She didn't have a toy box full of her own toys at home,
or a bedroom she shared with her sister,
I didn't know what silly face to make to get a huge belly laugh out of her,
I hadn't seen her and Mikah sitting together in the 'big' chair, while Mikah pretends to read to her,
she hadn't crawl around the house with naughty intentions,
pulled on Gus' ear,
or frustrated her big brother by knocking over his carefully constructed blocks.
I didn't know the annoying little stinker that would crawl into the kitchen every morning, yelling and screaming for her breakfast,
We hadn't played 'Pat a cake' or 'Where's your nose?' or 'Peek a boo!' with that little love we shared with an entire PICU.
But we have done all of those things this past year and a half, and we have had to share her with no one...
she has been all ours,
and our house is not 'home' until she comes back.

So please continue to pray for her,
pray for her little body to continue to be strong,
and pray that nothing derail the positive direction we are moving in.
I am well aware of the Power of Prayer,
and I thank you all for taking the time to send some upward for my precious butterfly, my tiger-fly, my littlest love... sweet Presley.