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".
Monday, December 17, 2012
Sunday, December 16, 2012
"Am I 18?"
Monday November 26, 2001
FROM MY NOTES:
Brian was in the shower when I arrived at 8 am. He was wearing his shoes from Spain when he came into the dining room. Nurse Annette couldn't find the slip-on shoes that Brian has been wearing (that Dave brought).
Brian had to eat rather more quickly than usual, because he had speech therapy at 9 am.He had his "real" speech therapist, Julie, today. She was gone all last week; Maria-Mercedes will be with him on the weekends. Julie sat with Brian while he finished breakfast, and I left them alone. She is working with him on repetition (repeating questions) and focus. After Julie, Brian had OT with Marcy. Their key word for the day was "focus".
Jimmy and Rosemary visited from 10:30 till 11:00; I was with Brian when they arrived, answering questions, but left so they could have time alone with him. He took them on a wheelchair tour of the Unit. They left for home.
Wendy, who used to live above Brian, Marshall and Kellie, visited with me, and then Brian. Brian was glad to see her; she visited at RVMC but he was barely awake the last time. Caren Caldwell (minister at United Church of Christ where I was the secretary) also visted. It was the first time she had seen Brian.
Brian had PT and OT together at 11 am, with Amy and Joyce. He stood at a table and played Tic-Tac-Toe, and sorted cards into suits. Joyce said he concentrated well during the game, but would forget his place if he distracted himself. He was able to place the cards in ascending numerical order with no problem, but had a little trouble with suits.
Dave arrived for lunch, and I left afterwards.
Brian had PT with Susan, who had him walk with the parallel bars, and he worked on a number puzzle with the OTA, Jaci. He had another PT session with Susan at 3 pm, during which he did exercises on the mat, and walked with the parallel bars and a walker.
Dave reported in the 4:30 slot in Brian's Journal (the one used to keep track of his days) that Brian peed "unassisted" into the urinal bottle. When Brian heard "unassisted", he thought Dave said, "on an assistant", and was distressed. Dave explained what it really said.
Kellie and Marshall visited between five and seven; Dan Ferguson reported that Marshall was only there at the end, briefly.
Dave and I returned at 7 pm. Dan and Marc were there with Brian. Brian tried to to pee standing up at 7:15! Dave left him in the room in his wheelchair, after loosening the belt, and Brian stood up! We had Bryan the nurse go in with him in case of trouble.
The "boys", Dave and I spent time in the room, touring, and in the dining room. Marc played piano a little. Brian and the "boys" joked about being gay lovers, and Dan made Brian a sign saying "I AM 17" because Brian kept asking if he was 18 yet. We talked about scars, and Brian wanted to know if he had a "cool scar" from his heart attack. He kept lifting his shirt and was disappointed to find no scar. We told him he would have one on his shoulder where the defibrillator was out in. He looked at it a little in a hand mirror later, but couldn't see it very well.
Brian asked many questions during the day about what happened and where. He seemed to think the paramedics did something to his heart, put in the ICD; or he somehow got a heart transplant. At one point in the evening he said, "Heart attacks are not good!"
Brian asked Dan's and Marc's ages several times (21 and 19), and apologized for forgetting Dan's birthday party (which he attended). Just before Dan and Marc left, Brian asked, "Will you buy me beer?"
Brian was very interested in his upcoming 18th birthday. "I'm gonna warn you, on my birthday, I'm gonna be out a lot." He wanted to know if he would be out of the hospital on his birthday; when we told him probably not, he was disappointed. We explained we could celebrate in the hospital, MAYBE we could take him out to dinner, and he could postpone other things till later.
I finally made a chart for him: COUNTDOWN TO BRIAN'S 18TH BIRTHDAY, to use as a cue for the "Am I 18?" question, and to count the days. We can cross off each day as it ends. Another theme of the day was: "Are you and Dave married?" We have told him "Yes", but not legally. Dave says "spiritually". Brian decided we are "married enough". He kept apologizing for forgetting our wedding - we told him we didn't have one. He has also forgotten Marshall and Kellie's wedding.
Dan and Marc left at 8:30. Bryan, Merrillyn, Dave and I got Brian settled into bed. He wound down more quickly, and I read a chapter of Through the Looking Glass, during which he fell asleep. Last night, they only recorded 5 hours of sleep.
FROM MY NOTES:
Brian was in the shower when I arrived at 8 am. He was wearing his shoes from Spain when he came into the dining room. Nurse Annette couldn't find the slip-on shoes that Brian has been wearing (that Dave brought).
Brian had to eat rather more quickly than usual, because he had speech therapy at 9 am.He had his "real" speech therapist, Julie, today. She was gone all last week; Maria-Mercedes will be with him on the weekends. Julie sat with Brian while he finished breakfast, and I left them alone. She is working with him on repetition (repeating questions) and focus. After Julie, Brian had OT with Marcy. Their key word for the day was "focus".
Jimmy and Rosemary visited from 10:30 till 11:00; I was with Brian when they arrived, answering questions, but left so they could have time alone with him. He took them on a wheelchair tour of the Unit. They left for home.
Wendy, who used to live above Brian, Marshall and Kellie, visited with me, and then Brian. Brian was glad to see her; she visited at RVMC but he was barely awake the last time. Caren Caldwell (minister at United Church of Christ where I was the secretary) also visted. It was the first time she had seen Brian.
Brian had PT and OT together at 11 am, with Amy and Joyce. He stood at a table and played Tic-Tac-Toe, and sorted cards into suits. Joyce said he concentrated well during the game, but would forget his place if he distracted himself. He was able to place the cards in ascending numerical order with no problem, but had a little trouble with suits.
Dave arrived for lunch, and I left afterwards.
Brian had PT with Susan, who had him walk with the parallel bars, and he worked on a number puzzle with the OTA, Jaci. He had another PT session with Susan at 3 pm, during which he did exercises on the mat, and walked with the parallel bars and a walker.
Dave reported in the 4:30 slot in Brian's Journal (the one used to keep track of his days) that Brian peed "unassisted" into the urinal bottle. When Brian heard "unassisted", he thought Dave said, "on an assistant", and was distressed. Dave explained what it really said.
Kellie and Marshall visited between five and seven; Dan Ferguson reported that Marshall was only there at the end, briefly.
Dave and I returned at 7 pm. Dan and Marc were there with Brian. Brian tried to to pee standing up at 7:15! Dave left him in the room in his wheelchair, after loosening the belt, and Brian stood up! We had Bryan the nurse go in with him in case of trouble.
The "boys", Dave and I spent time in the room, touring, and in the dining room. Marc played piano a little. Brian and the "boys" joked about being gay lovers, and Dan made Brian a sign saying "I AM 17" because Brian kept asking if he was 18 yet. We talked about scars, and Brian wanted to know if he had a "cool scar" from his heart attack. He kept lifting his shirt and was disappointed to find no scar. We told him he would have one on his shoulder where the defibrillator was out in. He looked at it a little in a hand mirror later, but couldn't see it very well.
Brian asked many questions during the day about what happened and where. He seemed to think the paramedics did something to his heart, put in the ICD; or he somehow got a heart transplant. At one point in the evening he said, "Heart attacks are not good!"
Brian asked Dan's and Marc's ages several times (21 and 19), and apologized for forgetting Dan's birthday party (which he attended). Just before Dan and Marc left, Brian asked, "Will you buy me beer?"
Brian was very interested in his upcoming 18th birthday. "I'm gonna warn you, on my birthday, I'm gonna be out a lot." He wanted to know if he would be out of the hospital on his birthday; when we told him probably not, he was disappointed. We explained we could celebrate in the hospital, MAYBE we could take him out to dinner, and he could postpone other things till later.
I finally made a chart for him: COUNTDOWN TO BRIAN'S 18TH BIRTHDAY, to use as a cue for the "Am I 18?" question, and to count the days. We can cross off each day as it ends. Another theme of the day was: "Are you and Dave married?" We have told him "Yes", but not legally. Dave says "spiritually". Brian decided we are "married enough". He kept apologizing for forgetting our wedding - we told him we didn't have one. He has also forgotten Marshall and Kellie's wedding.
Dan and Marc left at 8:30. Bryan, Merrillyn, Dave and I got Brian settled into bed. He wound down more quickly, and I read a chapter of Through the Looking Glass, during which he fell asleep. Last night, they only recorded 5 hours of sleep.
The Second Volume
Sunday 25 November 2001
FROM THOM'S NOTES:
8 am Right through breakfast. Looked at prints of self-portrait then wanted to draw. Drew a great self-portrait at mirror. Made him focus - and he went with it.
9:45 am catch in the hallway, beachball volleyball L hand on table in gym - juggling practice with one ball - High catch/high throw/low catch L to R
MOM:
This afternoon Jessica and Ahsa visited with painting supplies. Jimmy, Rosemary, Mary and Ali visited at the same time, interrupting the painting time. David Silverman was also there. Brian enjoyed everyone.
In the evening, Dan Ferguson and Vanessa Dudley were with Brian when Dave and I arrived. They had arrived during dinner. Brian drew both of the, ending up with one continuous line portrait that is very funny. He wanted to see his other drawings while he drew, to be reassured of his talent: "I'm really fucking good!"
He asked often, "Am I going out with anyone?" And he is now interested in his 18th birthday: "On my birthday, I'm going to buy cigarettes." He wanted to know if he still lived at 84 Emerick Street, and earlier in the day mentioned 747 Butler Creek (where he was then living with Marshall and Kellie).
Questions asked: "Why can't I walk?" "Am I going to walk?" "Dave, do you live up on the hill?" He asked repeatedly if Dave and I are married. We told him "Yes", and Dave said "Spiritually married."
At 8:15, Brian's friends Max Jacobson-Fried, Joel Crumme, and Andres (from Guanajuato). They stayed till 8:30, which is the time we are trying to establish as bedtime. Dave and I helped settle Brian in bed, and I read a chapter of Through the Looking Glass. We stayed till nearly ten, but Brian was not asleep. We heard later that he didn't sleep much.
Apparently, Jesse called Brian around 6 pm this evening. Brian got to talk to Jesse in his room.
FROM THOM'S NOTES:
8 am Right through breakfast. Looked at prints of self-portrait then wanted to draw. Drew a great self-portrait at mirror. Made him focus - and he went with it.
9:45 am catch in the hallway, beachball volleyball L hand on table in gym - juggling practice with one ball - High catch/high throw/low catch L to R
MOM:
This afternoon Jessica and Ahsa visited with painting supplies. Jimmy, Rosemary, Mary and Ali visited at the same time, interrupting the painting time. David Silverman was also there. Brian enjoyed everyone.
In the evening, Dan Ferguson and Vanessa Dudley were with Brian when Dave and I arrived. They had arrived during dinner. Brian drew both of the, ending up with one continuous line portrait that is very funny. He wanted to see his other drawings while he drew, to be reassured of his talent: "I'm really fucking good!"
He asked often, "Am I going out with anyone?" And he is now interested in his 18th birthday: "On my birthday, I'm going to buy cigarettes." He wanted to know if he still lived at 84 Emerick Street, and earlier in the day mentioned 747 Butler Creek (where he was then living with Marshall and Kellie).
Questions asked: "Why can't I walk?" "Am I going to walk?" "Dave, do you live up on the hill?" He asked repeatedly if Dave and I are married. We told him "Yes", and Dave said "Spiritually married."
At 8:15, Brian's friends Max Jacobson-Fried, Joel Crumme, and Andres (from Guanajuato). They stayed till 8:30, which is the time we are trying to establish as bedtime. Dave and I helped settle Brian in bed, and I read a chapter of Through the Looking Glass. We stayed till nearly ten, but Brian was not asleep. We heard later that he didn't sleep much.
Apparently, Jesse called Brian around 6 pm this evening. Brian got to talk to Jesse in his room.
Tuesday, December 4, 2012
End of Diary One
Saturday 24 November 2001
6:10 pm Dave and I visited Brian this morning before heading home for the day and night (in the year's first snowstorm, all the way to Medford). We were with Brian from 8 to 10 am, when it was time for OT with Marcy. Brian was up and getting ready for breakfast when we arrived. he brushed his hair and was ready to roll. Yesterday's themes of paralysis and his year in school continued. I showed him his grades from junior year, and he wanted to know why he had a 'B' in English if he was a straight 'A' student. I explained about the special AP test he took at year's end, which wasn't reflected on the report card, and which was supposed to up his grade to an 'A'.
We continued to re-assure him that he wasn't paralyzed and hadn't been. He is also concerned about us having heart attacks, going into comas, being paralyzed, and choking. He MAY have some choking memories from the pneumonia, but he has also been warned not to eat so fast, so he doesn't choke.
Dave was being silly and obnoxious, and I commented, "But he's obnoxious in a GOOD way," and Brian made a face, smiled, and said, "THAT'S a good joke, Mom!"
Brian and Dave banter a lot, with Brian calling Dave, "You bastard!" and "You're an asshole!", in a growely voice. There's a lot of friendly insulting that passes back and forth. (They still do this!)
Today in OT Brian was going to work on dressing himself.
"You guys, you guys, I want to warn you. I'm going to be asking a lot of questions today."
Brian got to talk to Alana on the phone!
(11/25) (7:15 pm) According to the notes in Brian's Journal (Memory Book) he got dressed and started his laundry with Marcy the OT. With the PT, he tossed the ball and walked with the parallel bars (Thom saw this later in the afternoon). Thom was with Brian all day, except from about 4:30 till 7 pm. Brian worked with Maria-Mercedes in the afternoon, and told her "I'm very, very tired today."
Dr. Levy visited: Brian's ICD has developed another "pocket" that may be an infection. Dr. Martin is supposed to check it on Monday.
Thom and Brian played left hand catch, in the afternoon. Thom worked with his left hand a lot. When Brian walked in the afternoon, he also stood and played "Connect 4".
Grandpa Jimmy and Grandma Rosemary visited, from around 4 pm through dinner.
In the afternoon Marc and Dan Ferguson visited Brian.
Notes from Thom:
7 pm - Max, Ayal, Vanessa, Jessica E, Matt and 2 others visited. Vanessa and Jessica stayed 'till 9 pm.
9 pm - Read a bunch of Lewis Carroll, seemed sleepy but kept interrupting to say how thankful he was for all the hours reading to him. I left at ten with Brian nodding off.
I asked Brian, after many of his consistent "I'm sorry's" if he felt guilty about something.He stopped and thought for a while, and said, 'I feel guilty for punching Steve (?) in the balls.'
Next time he said he felt guilty about being paralyzed. I assured him that Steve had forgiven him for the low blow (and that perhaps he had it coming anyway) and that he was not paralyzed and he didn't have to feel guilty about being hospitalized.
Vanessa says that when she visited on Friday, Brian made a birthday card for Bubbie, whose birthday was today.
Marshall is driving Brian's car and wearing Brian's Celtic necklace from Spain.
6:10 pm Dave and I visited Brian this morning before heading home for the day and night (in the year's first snowstorm, all the way to Medford). We were with Brian from 8 to 10 am, when it was time for OT with Marcy. Brian was up and getting ready for breakfast when we arrived. he brushed his hair and was ready to roll. Yesterday's themes of paralysis and his year in school continued. I showed him his grades from junior year, and he wanted to know why he had a 'B' in English if he was a straight 'A' student. I explained about the special AP test he took at year's end, which wasn't reflected on the report card, and which was supposed to up his grade to an 'A'.
We continued to re-assure him that he wasn't paralyzed and hadn't been. He is also concerned about us having heart attacks, going into comas, being paralyzed, and choking. He MAY have some choking memories from the pneumonia, but he has also been warned not to eat so fast, so he doesn't choke.
Dave was being silly and obnoxious, and I commented, "But he's obnoxious in a GOOD way," and Brian made a face, smiled, and said, "THAT'S a good joke, Mom!"
Brian and Dave banter a lot, with Brian calling Dave, "You bastard!" and "You're an asshole!", in a growely voice. There's a lot of friendly insulting that passes back and forth. (They still do this!)
Today in OT Brian was going to work on dressing himself.
"You guys, you guys, I want to warn you. I'm going to be asking a lot of questions today."
Brian got to talk to Alana on the phone!
(11/25) (7:15 pm) According to the notes in Brian's Journal (Memory Book) he got dressed and started his laundry with Marcy the OT. With the PT, he tossed the ball and walked with the parallel bars (Thom saw this later in the afternoon). Thom was with Brian all day, except from about 4:30 till 7 pm. Brian worked with Maria-Mercedes in the afternoon, and told her "I'm very, very tired today."
Dr. Levy visited: Brian's ICD has developed another "pocket" that may be an infection. Dr. Martin is supposed to check it on Monday.
Thom and Brian played left hand catch, in the afternoon. Thom worked with his left hand a lot. When Brian walked in the afternoon, he also stood and played "Connect 4".
Grandpa Jimmy and Grandma Rosemary visited, from around 4 pm through dinner.
In the afternoon Marc and Dan Ferguson visited Brian.
Notes from Thom:
7 pm - Max, Ayal, Vanessa, Jessica E, Matt and 2 others visited. Vanessa and Jessica stayed 'till 9 pm.
9 pm - Read a bunch of Lewis Carroll, seemed sleepy but kept interrupting to say how thankful he was for all the hours reading to him. I left at ten with Brian nodding off.
I asked Brian, after many of his consistent "I'm sorry's" if he felt guilty about something.He stopped and thought for a while, and said, 'I feel guilty for punching Steve (?) in the balls.'
Next time he said he felt guilty about being paralyzed. I assured him that Steve had forgiven him for the low blow (and that perhaps he had it coming anyway) and that he was not paralyzed and he didn't have to feel guilty about being hospitalized.
Vanessa says that when she visited on Friday, Brian made a birthday card for Bubbie, whose birthday was today.
Marshall is driving Brian's car and wearing Brian's Celtic necklace from Spain.
Monday, December 3, 2012
"Thankful Day"
Friday 23 November 2001
2:37 pm We arrived at 8 am this morning. Brian was in bed, looking peaceful and content. He told me he had a bad dream, dreamed he was paralyzed, then dreamed he could walk, which was great. The dream about being paralyzed was "horrible". He was concerned about being paralyzed all morning; we got him to move his legs to realize he is NOT paralyzed. "I can walk!" and we tell him he WILL walk. Amy told us this morning that during today's OT/PT session with she and Joyce, Brian stood in front of a table, working with colored blocks (sorting colors on sliding game) for nine minutes, and ten minutes! He leaned with one arm, but that was it! Amy also said that during their staffing Wednesday, they estimated/expressed the hope that Brian would be out in FOUR WEEKS, and that he would be on his feet, with supervision! Yay! Nothing yet is definite, but Amy is hopeful.
Brian is touring around the Unit - and down the hall outside it - in his wheelchair, using his feet. He can push/pull open the doors to get out, but Dave has also taught him to push the operating button ("a cool operator!")
Brian was afraid to leave his room for a while late this morning, because he thought he would have another heart attack. Dr. Solomon was concerned enough that he listened to Brian's heart, and talked to us about reassuring Brian (which we have been doing). We also just went out the door with him, to prove he wouldn't have an attack.
Maria-Mercedes, who is Brian's TEMPORARY speech pathologist, is working with Brian on SLOWING DOWN his speech. He slurs too much still, especially when he is tired. (This still happens, and he still needs to slow down at times)
On his way to afternoon PT with Amy and Joyce, Brian said he was still hungry. "Would you like a little snack?" asked Amy. They were headed towards me, and Brian pointed and said, "Martha!", then reached out and we kissed.
(The kissing on the lips was something that we did for quite a while, because it was part of Brian's developmental process. He was still a little boy in his return to us, and the kissing was a normal part of the stage he was in. It made some people uncomfortable, naturally, and we made sure Brian respected their feelings and did not push it - although it sometimes became a game. Other people attempted to shame him into not doing it. Eventually, he grew out of it. )
During lunch, Brian declared today to be "Thankful Day", because he is thankful not to be paralyzed. Brian has his "wipe-off" calendar on the wall next to his bed, and he writes on it when he wakes in the morning.
Brian's incontinence continues, so he is wearing adult diapers. We are all working on getting him to the toilet on time. Otherwise he wears his own clothes.
7:05 pm In Brian's room with Dave and Kate. Brian has been apologizing for being forgetful today.
Marshall, Kellie and Kate had dinner with Brian. Risa and Vanessa visited and drew pistures for Brian. M and K left at 6:30.
In afternoon PT, Brian stood one time 18 minutes and another one 7 minutes.
Brian tried to write "Feel truly thankful today" in his memory Journal.
"I feel so spoiled today."
Brian predicted he would stand for 21 minutes this afternoon; he stood for 25 minutes altogether!
Kate reports that, while looking through Europe photos, Brian remembered the names of people (especially Tracy), and the Eiffel Tower. He also remembers Paris, Justin, and Oliver.
Brian said he woke up this morning "thinking I was in my Emerick Street bed", and when he wasn't, then the day got weird. "I'm going to be very, very weird today you guys." (Emerick being the street he lived on for 13 years)
Brian wants to be called "Beastie Brian the Badass".
Kate left around 9 pm; she will visit for lunch tomorrow, maybe with her mom. Thom Little called; he will be with Brian for Dave and I tomorrow and Sunday morning. I read Brian to sleep by 9:20 pm.
Brian slept well last night!
Brian is still taking amantadine, an antibiotice, dilantin (last dose tonight) and tradnizone.
2:37 pm We arrived at 8 am this morning. Brian was in bed, looking peaceful and content. He told me he had a bad dream, dreamed he was paralyzed, then dreamed he could walk, which was great. The dream about being paralyzed was "horrible". He was concerned about being paralyzed all morning; we got him to move his legs to realize he is NOT paralyzed. "I can walk!" and we tell him he WILL walk. Amy told us this morning that during today's OT/PT session with she and Joyce, Brian stood in front of a table, working with colored blocks (sorting colors on sliding game) for nine minutes, and ten minutes! He leaned with one arm, but that was it! Amy also said that during their staffing Wednesday, they estimated/expressed the hope that Brian would be out in FOUR WEEKS, and that he would be on his feet, with supervision! Yay! Nothing yet is definite, but Amy is hopeful.
Brian is touring around the Unit - and down the hall outside it - in his wheelchair, using his feet. He can push/pull open the doors to get out, but Dave has also taught him to push the operating button ("a cool operator!")
Brian was afraid to leave his room for a while late this morning, because he thought he would have another heart attack. Dr. Solomon was concerned enough that he listened to Brian's heart, and talked to us about reassuring Brian (which we have been doing). We also just went out the door with him, to prove he wouldn't have an attack.
Maria-Mercedes, who is Brian's TEMPORARY speech pathologist, is working with Brian on SLOWING DOWN his speech. He slurs too much still, especially when he is tired. (This still happens, and he still needs to slow down at times)
On his way to afternoon PT with Amy and Joyce, Brian said he was still hungry. "Would you like a little snack?" asked Amy. They were headed towards me, and Brian pointed and said, "Martha!", then reached out and we kissed.
(The kissing on the lips was something that we did for quite a while, because it was part of Brian's developmental process. He was still a little boy in his return to us, and the kissing was a normal part of the stage he was in. It made some people uncomfortable, naturally, and we made sure Brian respected their feelings and did not push it - although it sometimes became a game. Other people attempted to shame him into not doing it. Eventually, he grew out of it. )
During lunch, Brian declared today to be "Thankful Day", because he is thankful not to be paralyzed. Brian has his "wipe-off" calendar on the wall next to his bed, and he writes on it when he wakes in the morning.
Brian's incontinence continues, so he is wearing adult diapers. We are all working on getting him to the toilet on time. Otherwise he wears his own clothes.
7:05 pm In Brian's room with Dave and Kate. Brian has been apologizing for being forgetful today.
Marshall, Kellie and Kate had dinner with Brian. Risa and Vanessa visited and drew pistures for Brian. M and K left at 6:30.
In afternoon PT, Brian stood one time 18 minutes and another one 7 minutes.
Brian tried to write "Feel truly thankful today" in his memory Journal.
"I feel so spoiled today."
Brian predicted he would stand for 21 minutes this afternoon; he stood for 25 minutes altogether!
Kate reports that, while looking through Europe photos, Brian remembered the names of people (especially Tracy), and the Eiffel Tower. He also remembers Paris, Justin, and Oliver.
Brian said he woke up this morning "thinking I was in my Emerick Street bed", and when he wasn't, then the day got weird. "I'm going to be very, very weird today you guys." (Emerick being the street he lived on for 13 years)
Brian wants to be called "Beastie Brian the Badass".
Kate left around 9 pm; she will visit for lunch tomorrow, maybe with her mom. Thom Little called; he will be with Brian for Dave and I tomorrow and Sunday morning. I read Brian to sleep by 9:20 pm.
Brian slept well last night!
Brian is still taking amantadine, an antibiotice, dilantin (last dose tonight) and tradnizone.
Thanksgiving 2001
Thursday 22 November 2001
(11/23) (2:20 pm) Brian spent the morning with Marshall, Kellie, and the Gardiners. Dave and I arrived about 1 pm, right after Brian returned to his room after lunch. He was in good spirits all day, with no nap. he did talk some about us "having" a coma, or a heart attack, and we had to reassure him. He gets more distracted in the afternoon, so he also gets more confused. (more tired - still happens when he is tired)
We went for "strolls" around the Unit, and Brian did lie down for a while later. At 4 pm, Kate arrived to visit, before Brian ws resting. We walked her into his room when he was up and he lit up with "Hi Kate!" he was soon ready for a rest, so we all sat in the Waiting Area just outside the Unit. Thom arrived while we were out there, and the Nurse brought Brian out!
Dinner time was 5 pm. Thom, Dave and I got food downstairs and ate with Brian. Kate was going to be going home for her meal, so she didn't eat. She helped Brian eat his meal, though! Helped him with utensils and such. Brian was full of life and humor. Kate was very good for him - a childhood connection. She left after six. Around 7 pm, Max and Matt arrived. The boys went in the room, but Brian wanted to be out in the hall with Thom and Dave, playing ball. They all ended up in the gym, hitting a beachball and another big plastic ball back and forth, and playing 'PIG" with a small plastic ball and floor-standing hoop. They worked on Brian's left hand and arm. The boys were GREAT with Brian.
They wore Brian out by 8 pm; Thom, Max and Matt left, and Dave and I got the Nurse to help Brian to bed. Dave talked to Brian a while about his sleep fears (he'd had trouble sleeping Wednesday night), then I read the first chapter of Through the Looking Glass. Brian was asleep by 9 pm.
Brian remembered all four countries he visited in Europe this summer, with no prompts!!
(11/23) (2:20 pm) Brian spent the morning with Marshall, Kellie, and the Gardiners. Dave and I arrived about 1 pm, right after Brian returned to his room after lunch. He was in good spirits all day, with no nap. he did talk some about us "having" a coma, or a heart attack, and we had to reassure him. He gets more distracted in the afternoon, so he also gets more confused. (more tired - still happens when he is tired)
We went for "strolls" around the Unit, and Brian did lie down for a while later. At 4 pm, Kate arrived to visit, before Brian ws resting. We walked her into his room when he was up and he lit up with "Hi Kate!" he was soon ready for a rest, so we all sat in the Waiting Area just outside the Unit. Thom arrived while we were out there, and the Nurse brought Brian out!
Dinner time was 5 pm. Thom, Dave and I got food downstairs and ate with Brian. Kate was going to be going home for her meal, so she didn't eat. She helped Brian eat his meal, though! Helped him with utensils and such. Brian was full of life and humor. Kate was very good for him - a childhood connection. She left after six. Around 7 pm, Max and Matt arrived. The boys went in the room, but Brian wanted to be out in the hall with Thom and Dave, playing ball. They all ended up in the gym, hitting a beachball and another big plastic ball back and forth, and playing 'PIG" with a small plastic ball and floor-standing hoop. They worked on Brian's left hand and arm. The boys were GREAT with Brian.
They wore Brian out by 8 pm; Thom, Max and Matt left, and Dave and I got the Nurse to help Brian to bed. Dave talked to Brian a while about his sleep fears (he'd had trouble sleeping Wednesday night), then I read the first chapter of Through the Looking Glass. Brian was asleep by 9 pm.
Brian remembered all four countries he visited in Europe this summer, with no prompts!!
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