First Pizza Delivery

Bailey wanted pizza last night, so we ordered Papa John's at 10:00 to be delivered to the front desk here at the hospital. It's such a relief to see her appetite getting back. She's such an incredible girl. I know we already know that, but to see her go through everything she has to go through on a daily basis and not complain about anything at all other than pain - it is such an amazing thing to be a part of. I am so proud of her.

Doctors came in today and turned her Berlin Heart down to a rate of 60 beats per minute (it has been set on 80). They're leaving it there all night and doing an echo tomorrow to see how her own heart responds to less support. Then they say they'll sit us down and talk to us about where we're headed. I was expecting to hear something last week but I haven't pressed the issue since time is on our side - the longer we wait, the better chance her heart has to recover, if it is going to. So, tomorrow might be the day we hear something. Please keep praying for us.

Martha, thank you soooo much for the bracelet. It is beautiful, and I love all the hearts. Thank you - I truly appreciate it. Carol and Jim, the coconut cream pie was wonderful! I had to share it with the nurses because I really don't want to leave the hospital bigger than we came in! It was delicious!! Diane, thank you for taking care of my girls!

Bailey made a clay switchplate in occupational therapy yesterday. The therapist took it home to bake it and brought it back today. It's so cute! Then she made a penguin today out of clay - she's very talented. Bailey still isn't supposed to walk around since her blood is still a little too thin, but we took a wheelchair ride over to the gym for physical therapy today. The stationary bike was too big for her (even on the shortest setting) so she kicked a ball around into soccer nets for a while. That was fun! It's nice to get out of the room. We can only travel for about 30 minutes on battery power, but we can also plug into an electrical outlet if we're on a longer trip. It's not bad. Remember our first walk?! We had 5 or 6 people that had to accompany us to take all the medical equipment, but now we're just down to the Berlin Heart and Bailey. We don't even have to take the I.V. pole along with us anymore - we just unhook it and hook it back up when we return to the room. We feel so free!!

Well, the nurses are talking about taking Bailey out of the hospital for her "weekend fun". (Last weekend was her slumber party.) I didn't know this was turning into a weekly thing, but the nurses are really getting into doing fun things for her and getting her to feel as normal a pre-teen as possible. She's such a good patient, they probably fight over who's getting her on their shifts!!

Duty calls - I've got to find some makeup that she got for a gift - putting makeup on before she goes to bed? Not me!!

Love you all!
Angie