Greater Independence

November 12, 2012
This is getting painful again. I think it is because I am catching up and returning to daily entries, living it again so intensely. It was also the time when Brian began returning to us, and yet we also became acutely aware of the deficits that would follow him for the rest of his life. Rehabilitation was hard work for everyone, and it really continues to this day. He is not the same as he was before 10/8/01, but he is more precious for having been lost and returned. 

Monday 12 November 2001
9:15 am  BRIAN FED HIMSELF!! I was feeding him eggs, Cream of Wheat and applesauce, and he reached over to do it himself. I held the plate containing the eggs, and cereal bowl, and he ate the cereal, then all the eggs! Then he wanted to finish the applesauce, so he held the bowl in his left hand and ate with his right! he even licked the spoon clean! When I asked him if he wanted to hold the applesauce bowl himself, he said, "Yes". He is tired (awoke at 2 am) but very responsive this morning). He responds well to quiet and gentleness first thing - letting him become alert at his own pace, not pushing conversation. When Dave came in, Brian really wanted to talk to him. We think Brian asked, "How did you sleep last night?" We were talking about bringing Brian a smoothie, and he requested a "strawberry smoothie", making sure Dave understood.
12:45 pm We brought a smoothie and put it in the fridge at the nurse's station, because Brian just fell asleep. He was sleepless again, waking at 2 am. He had PT and will have OT at one, so we will let him sleep. Alana is somewhere (we left her with him) and Marshall visited.
3:10 pm Alana just finally got in to see Brian. He has napped, had OT, ate, had a bath, and had PT this afternoon!
Alana heard that when Brian's trach is downsized, it will just be removed and the hole will heal up - no smaller tube.
Brian is FINALLY being taken off dilantin, according to Dr. Solomon.
7:30 pm  BRIAN'S TRACH IS OUT!! All he has is a hole covered with gauze and tape. It makes talking more difficult because the air wheezes through it. It should close up and heal in a couple days. 
Dave gave Brian his smoothie. Brian was very pleased, held the cup in his right hand, and drank the whole thing, without a straw (until he needed one for the dregs).
Brian reached out and pulled Alana to him in a big hug, while he was sitting in the chair and she was lying on his bed. He kissed her several times, on the forehead, nose and lips. VERY sweet!
It looks like Kellie's folks may be in town. Kellie and Marshall are still avoiding us as much as possible. No communication. Still no absolute word on when Brian will go to Providence. 
10:30 pm  I was  with Brian for about an hour and a half. He is now with Dave. Brian is tired and cranky, but fighting sleep. He is being weaned off the dilantin, which has acted as a sedative, but is still on lopressor, a heart medication that makes him tired. He needs sleep!
Tonight Brian selected and pulled out a cd (Jethro Tull, "Benefit") after selecting, removing, and replacing another. He also mouthed some of the words to the first song. I drew a little with the colored pens Marc and Dan brought him, and so did he. He also removed and replaced a pen cap, complicated with these particular pens. (Working hard on fine-motor skills)
Brian and Dave thumb-wrestled, which made us all laugh.