Sunday update

Shawnie said today that she can't ever tell if it's day or night since we've been here and I have to say, I'm completely losing track of days and times myself already.  She still is having a hard time fully waking up, but I think that's ok, since she has at least a 14 inch incision running down the length of her back.  Whenever she is asked her pain level, she always answers 2, so the epidurals are doing their thing.  Either that or she is just the toughest kid that ever lived... The puffyness is going down significantly and she almost looks herself again, only taller. :)  She was able to sit up in bed for a few minutes a couple of times today, and even tried to watch a movie, but had to lay back down after just a little bit.  The PT came in this morning to make her sit up and transfer into a wheelchair.  I was like, "Are you serious?"  She was.  Shawnie did better than I would have, and even though she was scared to death and it was painful, she did it without much sadness. She is eating pretty well and not reacting to the medications to the extent that she usually does.  She is still on blow-by oxygen, but we're hoping to let that go tomorrow, and I haven't been as concerned about it so much with this surgery because there are so many more bigger things to worry about.  According to everyone here, tomorrow is supposed to be the hardest day.  First thing in the morning they are turning off the epidurals and starting her on Lortab. We'll see how that goes.

Some happy highlights of the day:

We had some visits from good friends and neighbors who traveled way too far to check up on us.  It was fun to see them make her smile.

PCMC has their own LDS branch.  We had the neatest experience as they brought the sacrament into our little hospital room, blessed it, and shared it with us. It reminded me of how simple the gospel really is.

The anesthesiologist (kind of) apologized for the 'garden hose' that he put in her neck.  He said they just usually see more trauma with the neuromuscular kids.  He still can't believe how well she held her own during the procedure.

As last night's nurse left this morning she said "Even the healthy kids don't do as well as this!"  I was too happy to hear what she said to be insulted. :)

We just received a video all the way from Australia of my sweet grandma who Shawnie adores, wishing her well and sharing her love.  Thanks so much, Nat.  I can't believe you thought to do that.  It's beautiful.  I cried and laughed and she will surely smile.

Well, it's like Angie said, little by little.  I just keep reminding myself that, and we are seeing the blessings and the miracles and the strength come our way each day and feel very grateful.  If all goes well tomorrow morning with the transfer of medications, late tomorrow afternoon we will be transporting over to Shriners so that Dr. Santora can keep a closer eye on her. First he has to promise her that he will get her internet access in her room, it's not as available there as it is here and she is getting antsy to get back in her groove...