6/12/12 - Pretty popular today :)

We slept in...as usual again this morning.  It's such a struggle getting up when you're in a hospital (for both of us!).  I always hope Haylee wakes up before me...waking Haylee is like waking a hibernating bear.  It's almost dangerous.  You never know what she's gonna do!
Katy (day nurse) de-accessed Haylee after she woke up a little.  De-accessing isn't as stressful.  It's uncomfortable, but not painful (there's just a lot of pressure pulling the needle out).  She was finally free for a few hours!!!  She chose to be re-accessed at 5pm - EMLA to be put on at 4pm.  There was nothing pending for her to need to be accessed any earlier.  If she didn't need to have counts drawn daily, she wouldn't need to be accessed at all. 
A camera crew was on the floor today filming video for a annual fundraiser and asked to film patients in their rooms.  A few nurses nominated Haylee to be one of the patients - she's well known for her 'celebrity' status and bubbling personality :)  There was no audio with it so they just filmed her coloring a mask she got from the art cart and playing her DS.  While I was talking to someone from the foundation, Haylee started talking with the camera man, Raz, and it turns out he knows one of the stars of 'Sonny with a Chance', 'So Random', and 'Snap' (all on Disney channel) so Raz called up Doug Brochu (pictured below) so he could talk to Haylee!!! (If you're not familiar with the shows, you won't know who he is.)  She was so giggly talking to him!  He did most of the talking but she did talk back some.  It was so neat for her to be able to talk with a celebrity she knows on the phone!!  I hope she doesn't clam up when it comes time to meet
'The Beebs'!!!

The hospital's 'Fairy Godmother' came by after the camera crew left with her cart of books.  She is 90 years old and still volunteers at the hospital, dressed up in her pretty pink dress, everyday.  She's only supposed to let patients take 1 book but she said since Haylee was a 'celebrity', she could have 3!  Love the Fairy Godmother!
The doctors came by and let me know that since Haylee is allergic to both anti-fungals they normally give as a precaution, they decided not to try further and will start her on the oral anti-fungal (that she's not allergic to) next Wednesday.  Whew!  Bullet dodged!  Since her counts are still consistent, she may not make it to Camp Sunshine Summer Camp this year.  She's aware it's a possibility but that doesn't mean she has to like it.  We're saying prayers and keeping our fingers crossed that she's able to go but the doctors don't think it's going to happen this year :(
CURE came by and fed the floor for lunch.  Haylee and I ate lunch and chilled in the room until 1:30pm.  On the 2nd floor, there are many family amenities including....a treadmill!!  The family library is also on the 2nd floor which is across the hall from the 'fitness room' where Haylee was able to hang out and play computer games while I got some personal treadmill time.  She came to hang out with me the last 10 minutes of my time.  She really wanted to ride the stationary bike but patients aren't allowed. 
There was an art party going on downstairs that was making their own t-shirts but she didn't wanna do it.  She gets tired of arts and crafts all the time.  You can only do so much and unless it's something extraordinarily great...Haylee isn't game. 
Katy came in around 4:15pm to apply the EMLA and then read a book for a while (shocking, I know but I made her!).  Adam and Mason showed up for dinner right about the time it was time to re-access her so they waited in the family room.  Haylee did well - it wasn't the best she's ever done but I've seen much worse.  She cried some and was scared - and all that is OK - she tried super hard keeping her hand away from the site and stalled a little to long but followed directions after all countdowns.  She really knows how to work herself up and make herself scared.  All the things she was working for...money from Nonna, the bunny from Lindsay, and gift shop shopping from me...she got it :) :) :)  Like I said, I'm willing to give in as long as she tries.  I'm not expecting a flawless port access (I mean, it would be nice but it's not happening any time soon!). 
Our dinner with Adam and Mason was good!  They brought us Subway...yum!  The kids played in the room for a bit, we took them to the garden where they threw pennies in the wishing wells, filled a fountain with flowers and leaves, and ran around and played.  It was nice having them together again.  Adam said Mason talked about Haylee the whole ride down.  He misses her :(
We went back upstairs and she went to the playroom to play.  That's her way of letting me know that she needs her own time.  I'm OK with that.  We both need it.  I received a phone call from Haylee's cabin counselor from camp and we talked about Haylee coming or not.  What makes it so much worse if she can't go is that all 4 girls in her cabin are first time campers, the cabin counselor is child life from Scottish Rite, and Leah (our favorite charge nurse) is their cabin nurse.  Fingers crossed, fingers crossed!!!