So Much Growing

Sunday 11 November 2001
3 pm  Ayal and Ahsa are in the Waiting Room. Ayal got to visit Brian; Vanessa is in there now, with Alana. Dan and Marc visited briefly, earlier. Mary Kathryn and Terry were here this morning; they left for home at 1:30 pm. Marshall and Kellie were also here this morning.
Merrikat got to help Brian eat this morning. She said he "scarfed" his food: applesauce, scrambled eggs, cream of wheat, waffles with syrup, and thickened orange juice.
4:15 pm  I spent about an hour with Brian. I brought the most recent "Sneak Preview" newspaper, with Brad Rahmlow and Brady Brim-DeForest on the front (high school friends). He was very interested in the paper and I read him some of the article. he was quiet and tired; he didn't sleep well last night. he talked a little; I asked him to read a word - "Time" - and he did, in a whisper. He also read two of the times in the ad that contained the word. 
Brian needed to be changed and started to slide down in the chair. I asked himif he wanted me to get Penny to clean him up; he looked to the side, a bit embarrassed, and said "Yes". Penny and another nurse moved him to bed and cleaned him up and he fell asleep so I left (to Waiting Room).
We are slowly moving things out in prep for the move to Providence.
The plan is to take away the feeding tube (they have to leave the PEG in for now) permanently, then take out the catheter when he is more aware of outside/physical needs and sensations. At this point, he is not always able to tell if he is hot or cold, for example. 
Brian had lunch today, and will have dinner around 5:30 pm. For lunch he had: mashed potatoes, gravy, and meat, and custard.
Brian is "brewing" a slight urinary tract infection, so he will be on another antibiotic. (It was just one thing after another for so long! I still marvel at the resilience of his system)
Brian said the entire alphabet with Alana, in his "gut" voice as she calls it. HE led the recitation!
9:10 pm  I was with Brian from 5 pm until 8:45! Alana and Dave were in the room with me much of the time. I got to feed Brian: ground turkey, mashed potatoes and gravy, milk, grape juice, soup. He eats well, only needing to be reminded to sip and swallow milk and juice. 
We looked at pictures I brought in an album, mostly of Jesse and Jamie's wedding. Brian stared long and hard at Barb, Dave, Kyle and Amy (Magnuson, Dave's sister and family), recognizing them but not coming up with names. When Dave called Brian "The Magic Guy", Brian lit up and repeated it. (This was the name given to him by Amy and Kyle when he was 15 and we visited at Christmas 1997. He had wowed the little kids with his "magic" tricks and they never forgot it. He is still The Magic Guy.) Brian smiled when he saw pictures of Ilyan, Mary, and Sara (friends of Jesse and Jamie, at the wedding). He thought Megan was Sara, too. 
Dave and Brian played "bike ride" and "kick and push Dave" with Pink Floyd's "Dark Side of the Moon" playing. Brian spoke the words of the song while it was playing!! When Dave and Brian played "catch", Brian counted out loud, "One, two, three" before throwing. Penny saidn the counting helped. he doesn't throw the ball - it's a light toss (volleyball). Dave and Brian also played "Kick and step on Josie puppy", with Dave making the puppy bark and go after Brian's legs and feet, and Brian kicking. We all laughed and Brian grinned. Great fun! Brian also let out some aggression with these games. Dave tried to get him to punch the volleyball, too.
Brian and I had some alone time to snuggle, and we held hands alot before we were alone. I was also his backrest/support during the wild games. He said "I love you" and kissed me on the lips at one point. He fell asleep - nodded off - several times when I was alone with him. He was not pleased when I left, even though I left him with Alana (who is spending the night again - no school tomorrow).
Brian and Dave kissed goodnight. Brian gave Mary Kathryn a "goodbye" kiss. 
Brian waved goodbye to Penny tonight.
(The affection was part of Brian's healing, and ours. We needed that physical bonding and it was also a part of him growing up again)