A much needed update

I'm finally back!  Thanks to all of you who have checked in on us because of my absence here in the blogging world.  Rest assure, we're doing well.
We made our transition up to the 8th floor on Tuesday of last week.  We did it with little drama (thank goodness).  With the help of the childlife folks, we were able to prepare her for the move and then create a positive transition.  The only real change has been in Rylynn's attitude.  She's always been such a sweet little girl.  She may talk a lot, but she's usually rather cautious and quiet.  We've been really lucky that we never had any real terrible two-like behavior.  Until Tuesday of last week...
Ry now yells at anyone who enters the door.  She puts her hand in the air and begins to yell "No".  She will continue with the hand and the yelling until said person leaves her room.  I've seen kicking, pushing, and even a little high pitched shrieking.  :(
I know this is to be expected.  I am constantly reminded from the pros here that this is normal.  She has no control over her body, her room, her personal space, or anything else in her life right now.  So this is her only way of telling us that she's fed up with it.  I am relying on the guidance of the folks here to help us through the acceptable behavior and the behavior that I can discipline for. 
So the other weird thing is the idea of raising a child with everyone watching.  You know how sometimes you are in a restaurant or grocery store and your child is misbehaving, you have to think a bit and decide what is the appropriate move while folks are watching.  That's what I have to worry about every 10 minutes as another person pokes their head in the room and tries to make small talk with Ry about her puppy or her pretty pink fingernails as she is yelling "No".  Oh well.  I will do the best I can while we're here and hope that once we return  home, things can return to normal.
I lost my focus for a bit... So back to how Ry is doing. 
Things are pretty good.  We have not had to change her meds around much because we've seem to find a pretty good balance for now.  I am reminded that this can change suddenly and then take weeks to regain, but for now we'll celebrate our happy place!  We've still got a little work to do on her anti-coagulation.  We started her on aspirin last week and Saturday when we went to undress her site, there was a substantial amount of bleeding.  I've never seen her sites bleed like that and Gilly and I were super worried.  We immediately discontinued the aspirin and are going to wait before slowly trying to get her on it again.  The sites seems to be trying to heal and we've had no major bleeding since then.  I am hoping the clot from the heavy bleeding does not cause us any grief or infection down the road.
One of our daily challenges is still trying to get her to eat more.  Right now, in a typical day, she'll eat a few bites of egg, one bite of toast and one grape for breakfast.  At lunch time I'm lucky if I can get her to eat a couple of goldfish or a bite of banana.  For supper she might eat a half a chicken nugget and a few bites of macaroni.  But man are we trying, I hope it will get a little better each week.
She's been just as stubborn each day during her PT/OT sessions, not much has changed.  She cries during most of them only because she's making a point, not because she can't do what they are asking of her.  But luckily she has finally learned to love going for walks out in the stroller to see the trains or blow bubbles in the butterfly atrium.  She still has major anxiety about the playroom, painting studio, and any other new adventures, but I see a HUGE improvement from where we were just a couple of weeks ago. 
For the most part, we spend all of our free time sitting at our new Dora folding table and chairs playing with our moon sand here in our room.  This is her favorite past times right now.  We shovel sand with our spoons morning, noon and night!  Our room is decked out with a doll house, tubs of art supplies, books, movies and anything else a toddler could want.  The hospital has given us so many things and so have many of our friends and family.  Ry has so much to keep her busy.
The final little bit I want to share for tonight is Ry's new found love for the ice machine in the nourishment room across the hall.  Even in ICU Rylynn loved to eat ice, but having full on access to this ice means she needs every drink to be filled with ice, not just ice cold.  If there is not enough ice, it must be refilled.  And even though she gives her bed side nurse grief ALL day long with the kicking, yelling, etc., she has learned that she can ask them for ice and a spoon and they will bring it.  Each nurse will ask as they leave the room "Is there anything else I can get you?"  They probably do this mostly out of habit and they are usually addressing me or Gilly, not really Ry.  But each and every time Ry hears someone ask this question (even when you think she's not listening), she will pipe up with "ice and spoon".  And lo and behold her kind nurse will come right back with a cup of ice and a spoon.  Last night she was falling asleep with her eyes already closed and all snuggled in.  And without even opening her eyes she answered the nurse with her request.  What a little stinker, but hey if it makes her feel better and gives her a little input on her care than keep those cups of ice coming!
I am exhausted and have to get some sleep.  Once again sorry for the delay in posting, I'm so glad to be up and running now and promise to keep you all better informed.  Please continue to pray for Ry.  Living in a hospital is no place for a two year old, but we're trying our best to make it work.  We pray for her Angel heart every night and every day.  We love you all.
Good night.