Thank you for the toys Cannon!

Wake up sleepy head!

Hi All – Sally was overall in a much better mood the early part of today. She ate a big breakfast, played in her high chair for a good hour, and watched our roommates that we spent all week with pack up and leave. They were from Orlando and were really great, their son Cannon was so cute and reminded me of William. They also left us a ton of stuff (blankets, pillow, food, toys) that they couldn’t take back with them. Sally had more fun playing with a toy truck than any of the baby toys I tried. We even switched to their side of the room, which is more private and has its own window off to the side. Seriously, you have no idea what a huge deal having a windowsill next to the bed is, I mean we can put our drinks and stuff there! Good lord, we need to get out more.

I tried feeding Sally around noon and planned on her having a large bottle and taking a long nap. She drank a little then pushed the bottle away. When I tried to give her more, she went into a painful cry that lasted 10 minutes. I started to have concerns about mouth sores and gave the nurse a heads up. I walked her around the floor to “reset” the situation before trying again, and got the same result. I finally just had her fall asleep on me, and had a hard time waking her 2 hours later for her steroids. Seriously, she was like a teenager. I even tried torturing her awake by opening the blinds, taking her blanket away and kissing her cheeks repeatedly. I finally roused her and she took an OK sized bottle and thought we were in the clear, but then she grew grumpy over the next 2 hours and on the following bottle she screamed again. I had the nurse look in her mouth and sure enough, it was red and she saw a sore.

So we’re back on the morphine, which perked Sally up. At least this time we’re out in front of it, and again are happy we chose to stay in MSK instead of trying to head home on Thursday, we wouldn’t have been there more than a few hours. The rest of the day was uneventful, we almost never watch TV but Sally felt like snuggling so I turned it on and introduced Sally to The Godfather which happened to be on. Nicole even got to go to our friend Chrissy’s engagement party this afternoon after work at let loose for a bit. All in all, not a bad day. I learned that the nurses that haven’t had Sally yet are now requesting her saying that they want a turn, which must be why we’ve had so many new nurses this week.

Sadly, we did learn this morning that the young boy I mentioned in yesterday’s update passed in the middle of the night. I couldn’t help but walk by his room this morning and feel a sadness in my core. Please keep Sally and his family in your thoughts and prayers.

Matt