Writing His Name

Tuesday 13 November 2001
7:50 am  Last night Dave came back and reported to me that Brian said, "One Question, One Answer" (it sounded like caps, the way Dave presented it), and "In 1492, Columbus sailed the ocean blue." They both had a good laugh over the latter. Dave said he tried 15 times to get it loud enough. I don't know any more about the context.
12:15 pm  I was with Brian from 8 am until 11:30, when he fell asleep (while I read him Alice in Wonderland). 
Brian had a busy morning, but not hectic. Another new nurse: Diane (he had Linda yesterday - very nice and helpful). Diane won't give him solid food until she has a written order; she's also a bit brusque and insensitive to Brian's need for privacy. While Brian was still in bed, he was looking over at his posters on the wall. I asked if he wanted me to take one down for him to look at, and he said "Sure." I brought down the one with the most messages, sat him up more in bed, and he held the poster and looked at it for 15 minutes or so. I am certain he was reading it. He would point to messages he couldn't read, and I read them. He smiled as he was reading/looking. Then I took down a be-ribboned set of notes on construction paper, from a Choir retreat, that was hanging on his IV pole (from the ceiling). He wanted that, so I gave it to him and put the poster up. I helped him negotiate the little pages a bit, then let him read and look on his own. 
(Yesterday, when I was re-organizing my closet, I found this string of notes and couldn't remember where they came from. I will try to scan them in tomorrow when I have more time. Brian sang bass in the choir; he was new that year.)
We were interrupted a little after ten by the physical therapist, Janet, and her silly helper, Valerie. They had a good time. Janet worked with Brian's legs the way we do, then they helped him sit up on the edge of the bed and get from there into the Cadillac Chair. he helped fasten the waist belt and scoot himself up, sitting VERY straight.
Brian had not had breakfast and the only order Diane had was for thickened liquids, so she got him a milkshake. She asked him what flavor: "Strawberry? Chocolate?" "Chocolate!" (Byt his time, Marshall was in there, too).
While we waited for the milkshake, I took down the poster of colored photos of Brian, and he looked at them with it sitting on the table in front of him. We helped him pull one picture off because he wanted to look at it closer. (I encountered these yesterday, too)
The milkshake was a big hit. "It's cold," he told Diane. He drank the whole thing without a straw, until the end when he sucked up the dregs.
Brian saw Marshall's cell phone and asked, "what's your cell phone number?" Marshall wrote it on a little piece of paper, and gave the paper to Brian, who looked at it intently and read the numbers aloud (in his whisper voice). I asked Brian if he wanted my cell phone number and he replied "Sure." Marshall handed me his pen, but Brian wanted to write the number. So he wrote each numeral carefully in tiny writing. The only numbers that weren't clear were the "6" and the "3" (which looked like a circle and an "8" respectively). The other numbers were 2,1,4,7,8. (The tiny writing was a result of disgraphia)
Diane wanted to know if Brian wanted to get back in bed to rest, since he would have a busy afternoon. He immediately started getting out of the chair! Marshall took this as his cue to leave and interrupted Brian's writing to demand (insist on - given reluctantly) a hug. Then Brian got to "help" get himself back in bed. he got cleaned up, then stretched out quietly under a blanket while I read to him. It is important that we do not demand behavior - hugs, kisses (I've been guilty of insisting on giving him a kiss), anything else - unless it's requested and therapeutic. Patience - he is very patient right now - is required from us. He is doing everything in his own time. 
9:55 pm  I read Alice in Wonderland and relaxed Brian and put him to sleep. Having him lying flat in bed also helps him relax. Dave and I met with Eric Warren to look at the proofs of the card and 8x10 inch print of Brian's pencil self-portrait. We made a few corrections and it will go to the printer tomorrow. All donated!! Another fundraiser! Brian seems pleased with the idea. He hasn't seen the proofs yet. (I have posted a copy of this print previously) Wayne Fitzpatrick called tonight to check on Brian. He told me his friend Joy's 10 mile trail ride fundraiser is happening this weekend. Aunt Merrikat called tonight. Alana visited. Art and Butch Filliger also visited this afternoon.
BRIAN WROTE HIS WHOLE NAME, in tiny letters, on lined paper. (I will look for this)
When Dave and I were with Brian this afternoon, he immediately wanted us to help him sit up (after the PT, Janet, had been in working his torso and legs). So we lowered the sidebars on Dave's side, put Dave's shoes on Brian's feet for better traction, and Brian sat up virtually unaided - I had my hands at his back, but he didn't need them, and Dave barely held his left hand. Brian had some trouble keeping his feet on the floor, and couldn't sit up long, but he did it three or four times. Then Nurse Diane got upset and insisted he lie down on his bed again. 
Brian got to have solid food for lunch, and ate everything, by himself: grape juice, sweet and sour chicken, asparagus, vanilla ice cream and milk. Dave made Brian a smoothie, but never got an opportunity to give it to him. 
Dr. Sullivan visited Brian briefly this morning, and Brian smiled when he came in. Dr. Sullivan asked, "How are you?" and Brian replied, "Fine. How are you?" He also gave the doctor a classic errant right foot to the chest, which caused smiles on both sides. "Well, hello," said Dr. Sullivan. Rumor has it that Brian is going to Providence on Thursday - relayed by Alana, who heard it from Marshall. 
Today Brian missed his echocardiogram appointment that was scheduled when he saw Dr. Foster in September.