Tuesday, August 17

Sunday, August 15
Sunday was another medically boring day, which is a good thing. When I was feeding Collin his breakfast, I noticed that his last eyelash that had been holding on for days was gone. Bill and Neya spent the day hanging out with us like they did Saturday. We put a gym mat on the floor and covered it with a sheet so that Collin could play on the floor. When it was time for lunch, rather than picking the mat up, we just decided to eat lunch picnic-style on the floor. Afterwards, we played some more. Bill sat and juggled for Collin, and Collin was so excited watching the juggling that his whole body shook. Then Bill gave Collin the balls so he could have a try at juggling. I'm so glad I grabbed my phone to film it, because it makes me laugh every time I watch it!



Monday, August 16
Collin's blood cultures that were taken when he developed his fever have come back negative for any infection. His fever has not returned, so he was taken off one of the broad-spectrum antibiotics today. On Friday he was also taken off the droplet isolation he had been put on due to his sneezing because that culture was also negative for any infection. So, Collin was allowed to go down to the gym for physical therapy as long as he wore a mask in the hallways (since his immune system is still zero). Collin was excited to get out of the room, and tolerated the mask with no problem. His PT had set up some toys on the floor so he could sit and practice some reaching first, but that wasn't what Collin wanted to do, and he yelled at us to let us know it. His PT compromised by outting the toys on a bench that Collin could stand at. Then she did some walking with him, just holding on to his hands. He saw a big rocking chair he wanted to play on, so his PT helped him climb up and rock on it. Then she tried him on some steps to see how he did. At home, Collin has only ever crawled up the steps. His PT held his hands and helped him walk up and down the steps, and Collin didn't want to stop. He didn't practice walking with his walker at all because he just wanted to go up and down the stairs.

Tuesday, August 17
Collin had a very restless night last night, and was fussy all day today. He cried, didn't eat well, didn't want to participate in therapy (which was a first!), and was very difficult to please. He napped this afternoon, and a little while before dinner I asked him if he wanted to go walk in the hall. He seemed very excited, so I put his sneakers and mask on, grabbed his walker and the IV pole, and headed for the hallway. When he realized I meant he was going to walk in the hallway, he had a fit! He wouldn't budge with the walker at all. So, I carried him and pulled the IV pole along as I walked up and down the hall. It was nice to get out of the room for a little while. Then I put Collin in a toy car that can be pushed, and I pushed him up and down the hall (while still dragging the IV pole along with us). He seemed to like it at first, but then decided he was done. He started crying and tore his mask off, so we went back to the room. He proceeded to throw a huge tantrum when I tried to feed him dinner. Later, when Bill and Neya came, Bill wondered if the Neupogen could be causing him discomfort again, just as it did at home. It seems to be the most logical explanation for such a change in his personality.

Since his counts are starting to come back up, it seems we may be able to go home at the end of this week. Fingers crossed!