I'm trying harder to focus on the good things that are happening in our lives along with the all the technical things.
The first great thing is that Averi loves music and loves to dance and I finally have proof. Unfortunately, my proof is sideways, but you can get the gist of it.
She couldn't stop dancing while the music was playing. I don't even know if she realized she was still doing it after a while because her eyes were staring off into space. I love it!
One really awesome thing took place last week and I forgot to mention it (again with the forgetting to count my blessings). Let me preface by explaining that there is a $2 fee for the parking garage here at Children's. It's annoying for appointments but uncalled for when you have a child admitted to the hospital. Dan told this opinion to the social worker who put us on a waiting list for a parking pass. We had no hope of it working out since the list is long, it doesn't back pay, and we would probably have to return it and reapply every time Averi was discharged and readmitted.
Well, last week the social worker brought us our very own PARKING PASS! We can even keep it until Averi is done with all her chemo (I might keep it a little longer since we are here all the time for appointments, but you didn't hear that from me.)
Another great thing is that Averi is slowly but surely getting stronger. The other day she was fidgety so I got out the mat and let her roll around for a while. She loved it! Her cords were a tangled mess but she was very happy to be able to move. She even rolled onto her tummy and stayed there to play, which never happens.
One last great thing that has happened is that yesterday we were moved to a bigger room. This may not mean much to those of you who never saw the other room, but it is very exciting for those of us who have to live here. It is a corner room with lots of windows (still overlooking the parking garage =P) and there are a few things I miss about the small room (apparently I'm never happy) but it is much bigger and accommodates all our long term living stuff. (At one point last week the doctor jokingly told me to unpack and set up the window curtains because we would be here for a while.)
As a quick update, Averi is still doing just fine and playing and napping like she always has. She was put on isolation today, meaning the employees have to wear gowns and gloves to enter the room, because she is still having diarrhea and they want to test it. Other than that, life has found a new kind of routine and we are doing just fine.