4/19/12 - Day 16

Please pass along or promote through Facebook, Twitter, or to anyone who would be interested the link for Haylee's YouCaring site!  Thanks again!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee

Haylee wasn't as restless last night but still restless, nonetheless.  She only woke me up once to tell me her mouth was hurting.  I heard her toss and turn less than last night.  I was the restless one!  Being at the hospital day in and day out can really wear on you.
Haylee played 'Mario Kart' on the Wii with a boy on the floor for a little while.  Adam showed up and told us he thought something was going on downstairs cause the CHOA mascots, Hope and Will (isn't that too cute?!), along with a therapy dog.  When we got down there, we realized that some sort of presentation was going on.  Hope and Will were available for picture opportunities but Haylee said no.
We had lunch with Adam and visited with him for a little bit.  I went ahead and let her skip school today but told her she had to get in a bit of time tomorrow to make sure she's completely caught up to start next weeks work.  Colleen came in for her daily check-in but there's nothing new.  Haylee's rash is looking tons better, however!!  It seems to be fading from her upper extremities and moving down to the lower.  The intense heat that was in her arms yesterday has diminished soooo much!  The rash is still there, don't get me wrong, but compared to 2 days ago and even yesterday she looks 100% better.  She didn't even want the cream put on.  I think I'm going to convince her that it needs to be put on anyway, just to help things along.  Dermatology went ahead and took her off their list to be seen but will check with the doctors periodically, just in case. 
After all the check-ups, we hung around the room.  Brittany (CL) came by to see if she wanted to join a group of girls they gathered together to dabble in a little bit of art (Haylee's famous line).  She went for about an hour then we headed off to Thursday night BINGO.  She won an origami set, an elephant stuffy that goes with the cheetah stuffy from last week, and a Princess and the Frog play set.  Meth showed up in the middle of BINGO to visit with us.  CURE served us dinner again - fried chicken and yummy sides.  Haylee played games on Meth's phone, watched Bieber videos, and played with us. 
Lisa, our night nurse, came in to let me know they planned to reaccess Haylee and draw labs at 6am.  Um, no.  That wasn't happening.  Haylee is still up in the air about the accessing (as Meth and I found out tonight) and is not a morning person.  They were not going to ruin her morning that way.  I asked for them to put the EMLA on her around 8am or so and reaccess around 9am.  It's still earlier than what we're used to getting up, but it's better than 6am.  We will make sure and get up and around at 8am so we are awake by then.  Meth and I casually talked with her about it - she's a little scared about it.  I talked a little more about it with her after Meth left and I think she's going to do just fine with it.  I just hope she doesn't make me a liar!

No counts today :(