Brian Walks!!

Tuesday 27 November 2001
FROM MY NOTES:
Brian's main theme for the day was Alana. "I want to see my girlfriend!" and "Is Alana still going out with me?" were common throughout the day. I called her home and the high school and left messages telling her Brian wanted to see her. Brian thought she hadn't seen him at all; she hasn't visited since last week, because her parents wanted her to stay home, take care of herself, and get her school work done. I explained to Brian that Alana had been with him every day, or close to it, up until last week. When I gave Brian Alana's picture (it was in a photo album), Brian carried it around for awhile and kissed it numerous times. It is now kept on his bulletin board. Brian wanted to know Alana's phone number, so I looked it up in my notebook. We worked all day on remembering it; Brian did pretty well with that. Dave wrote it on the back of Alana's picture.
Dave moved us out of the Cheney House this morning. We will be staying in a guest house above a garage in Ashland. Gail Berk, who we met in the ICU Waiting Room a week ago this weekend, offered it to us. It is very cozy, at the corner of Manzanita and Almond, above Briscoe School. We can stay as long as we need to. 
(This was another one of the amazing things that came together for us when we were in need. We had to move out of the Cheney House since Brian was no longer in the hospital. Mrs. Berk's husband was in the ICU and we all connected. Strangers, there to help. It wasn't the last time).
Dave came to the hospital near noon, for lunch.
At 9 am, Brian had OT with Marcy. He got dressed, brushed his teeth and hair.
Brian and I worked on remembering between OT and his combination PT/OT session. I asked him what his phone number was, and he gave me 482-5702, our old number from Emerick. Later in the day, he was able to remember his current phone number, with help.
When I came into the Unit near the end of Brian's session with Joyce and Amy, and I was nearly to his room, BRIAN CAME WALKING AROUND THE CORNER AT THE END OF THE HALL!!! Amy was right behind him, hands on the white canvas "gate belt"; Joyce was behind her with the wheelchair. I started crying. "Mom, why are you crying?" "Because I'm so happy!" "Mom, you're so silly!" and a big hug. Throughout the day, Brian practiced walking, only with PT/OT therapists. He can't walk with us yet, though we can help him stand to get in and out of the wheelchair or bed, and to pee (the latter of which he did for the first time after lunch). Amy told us he will probably be able to walk with us very soon.
Brian was VERY excited about walking. Just the day before, he thought he wouldn't be able to. At lunch, when Dave arrived, the two of them bantered and smartassed quite a bit. We are working on Brian eating slowly, chewing and swallowing, and not talking with his mouth full - with some success. he is now using his left hand regularly, and the "left neglect" seems to be diminishing significantly.
After lunch, Dave helped Brian stand to pee for the first time!
The PT Assistant Jennifer, who worked with Brian in the afternoon, had him out of the wheelchair completely. Dave and I helped, too. We walked down to the gym, where Dave and I tossed a beachball and hit a balloon back and forth with Brian. Then Dave and Brian played basketball, with Brian sitting on the mat (off the floor, about 1 1/2 feet) and shooting hoops, and Dave fetching the ball. All the time, we worked his left hand. When Brian was tossing the beachball and balloon, Jennifer had him kneeling. The mat was too hard for Brian's knees, so Jennifer put a pillow under them. After we played, we walked around the hall and back to Brian's room. I noticed that he has a slightly pigeon-toed gait, with the left foot turning in noticeably. Looked like early walking in childhood - but not his stride, once he gained some confidence with Amy, later in the day!
With Marcy during OT, Brian made a lovely card for Alana (which he/we forgot to give her when she visited that evening).
Julie the ST worked with Brian on his notebook. They put in new dividers with labels, including sections for Schedule, Calendar, About Me, and Rules (currently, Rules for Standing and Walking). I worked on three subjects for the About Me section, creating sheets for Brian and i to fill out (which we did between 4 and 5): All About Brian, Brian's Family, About Brian's Heart Attack and Coma. These are geared towards helping Brian answer his questions on his own. The Calendar section contains calendars I made for October, November and December, with special events noted as they come up (or exist, as with his birthday).
Julie's concerns are with Brian's stuttering (cortical/developmental) which is new, and distractions on his wall. He needs to slow down to keep from stuttering, and we will take down a bunch of the stuff on his walls. I have deliberately kept the items with directions or information on the wall next to his bed, to avoid the problem of trying to find them on the other wall. 
Dave had breakfast with Dr. Solomon and they discussed appropriate topics. Solomon does not believe discussing high school graduation is appropriate. We talked to Amy about cds, and she still believes that the more techno, disjointed music is not appropriate for Brian. 
Dr. Martin came in at 4 pm to look at the ICD. He is not alarmed. The site is swollen, some with fluid, but mostly just the device itself, because Brian is currently so thin. The incision/scar is purplish and thin, which is not usual, but Martin isn't disturbed by that specifically. His concern is with the spot where the incision opened, where there is a bubble of blood/fluid periodically (it wasn't bad when he saw it). But there is no redness or real swelling, no fever. So 10 more days of antibiotics, clean dressings, and observation. 
(Later the following spring this area did become a problem, and Brian eventually had to have the entire device replaced and moved to the other side, wires and all)
I told Brian that Dr. Martin (who told Brian his name is David) was the person who put in the ICD, since they hadn't really met (and Brian wouldn't have remembered).
Brian had dinner with Marshall and Kellie.
My sister called while Dave and I were eating.
Alana called just before we left for dinner. She was trying to arrange a ride with Lynn, which she was able to do: they arrived at 7:15 and stayed till 8:30. The adults let Alana and Brian spend time alone in the room. Lynn gave Brian a card case with a family photo of the Kamburys, labeled with names! (Lynn was Alana's step-mom) The adults talked in the hall, with Nurse Merrillynn joining us. She told us about Jesse's Sunday call. Later she told me that none of the staff cares about any of the junk going on between us and Marshall and Kellie, and that Dave and I are doing "a wonderful job". So they all know, although Dave and I have kept it to ourselves.
Brian and Alana had a sweet time together (Brian was already in bed, at his request); we found him there at 7 pm). Alana still needs to take care of herself and school work, so she won't be visiting every day.
We got Brian all settled in bed, with pills taken and peeing done, and I read to him, with the instructions that he needed to be quiet and close his eyes. He DID have to tell us how much he loves Alana- "I love that girl!" - and had to kiss her picture. He fell asleep by 9:30, after Dave had left for our new "home".