Saturday, Sept. 21st.
Toni was just exhausted tonight...watch for the update tomorrow! To see
additional pictures that Emilie took (Daniel's friend from Bard), check out
her site: Emilie Richardson's
site
Daniel Writes his Own Update!! Sunday, September 22th, 2002
Hey, this is me (Daniel) writing today. Yesterday I started off my half day
of therapies with the balance group. Far from being daunting and scary like
last week, the balance group on Saturday was fun. I did an obstacle course
with some pretty challenging obstacles (e.g. going forward and backward over
platform and rolling around on a bouncing ball) and then passed a beach ball
to an older man named Gary. Gary kept stepping forward and ended up beaning
me over and over again in the head. Then I went to the Functional
Communication group. We discussed court and legal cases. One of them was
from Orange County which made me feel a little closer to home, and one of
them was about a tractor truck driver with sleep apnea which reminded me of
my dad. The final group was Bilateral Upper Extremities group. A lot of
people were late for the beginning of therapy so the session was quick and
easy. Then my Mom and I went on a super fun trip to Starbucks (we both
ordered mocha frappacinos) and then headed on over to Crossgates Mall outside
of Albany to go see My Big Fat Greek Wedding. For those of you who haven't
seen it, let me tell you that it is a very funny movie with smart humor and
good acting. Going to the movie (where I passed on handicapped seating and
instead climbed the flight of stairs to sit where my Mom could see better)
was nice because I was doing a normal activity. One step closer to
reintegrating with normal society! We had another adventure trying to drive
home. We got lost on some small road in Albany, passed over a couple kills
(east coast codeword for creeks), and finally found our way to Sunnyview. At
Fisher House I get to read all your messages and I really enjoy that. I hope
your Sunday goes/has gone well. Ciao!
p.s from Toni. For the answer to the riddle check Margie Hall's answer on the
Guestbook...she got it right!
(Additional update: It's Daniel again. So far today the ceiling in my room
gushed a torrent of water onto my bed and table. The maintenance men were
looking at it when my Mom and I left for our Sunday away from Sunnyview,
stopping at Starbucks on the way to Fisher House. We also stopped by Taco
Bell (a fast-food joint I've been craving) and at a grocery store to pick up
food for today. Yes, we're cooking! Amazing but true.
It's back to me again (Toni). Shortly after Daniel made his entries he
decided to take a nap and finish later...but as always, the day kind of got
away from us. While Daniel slept I did laundry and started whipping up
Whoopie Pies (his favorite). This is so not me to be cooking that it takes
much longer than for most cooks. (I tend to get distracted.) Anyway, before
we could do any actual baking we decided to take in another movie and we were
off to the Crossgates Mall--this time for "The Banger Sisters." Different
from what we expected--funny but also some poignant moments.
We returned to Fisher House and while I baked Daniel read ME Harry Potter.
He also helped do the dishes before he faded and went to lie down. We
decided on a quick supper of hummus, tomatoes, and pita bread so I could take
my turn with Harry Potter. Before time to leave Daniel got calls from Mindy
and Betsy...a real treat. I left Daniel in front of the house while I went
for the car and when I returned he warned me to be careful, since his dinner
was now decorating the grass. Not to be deterred he grabbed a plastic bag,
got in the car and we returned to Sunnyview.
Daniel went up to the third floor while I unloaded the wheelchair and
goodies. To my surprise when I entered his room it was empty. The bed was
stripped, everything was off the walls and Daniel was nowhere to be found. I
wandered the hall for a moment and found him tucked away in a new room around
the corner. Apparently they were afraid his room wasn't safe with the wet
ceiling tiles so they put him in the only vacant bed. I'm sure the nurses
were shell-shocked trying to get all the pictures off his walls...we owe them
big-time. We spent the next hour trying to sort out his stuff (almost
everything had been piled on his bed) and get him settled. His new roommate
will be Warren, a very nice older gentleman (who sometimes thinks Daniel's
bison head is real). I left muttering to myself..."Change is okay, change
can be good...(and a few other phrases I choose not to repeat)."
Until tomorrow I wish for all of you a week that goes quickly, where your
patience is not tested...Love, Toni
Monday, Sept. 23rd
Found Daniel at the computer in the patient lounge this morning trying to get
on to the Internet. (No luck, but lots of practice.) Seems his new roommate
talked loudly in his sleep for most of the night, as well as being pretty
confused. As Daniel and I were chatting I noticed the workmen leaving his
old room. I chased them down the hall to see if the room was fixed and ask
if we could move back in. Their reply, "Somebody will be moving in today."
A quick request of the closest nurse to return to "Daniel's real room," and
we got the go ahead.
Daniel was due for PT so I bid him farewell and began one of several trips
down the hall, dragging chairs, small bedside tables, etc., to move him. It
only took me an hour before his room was back to normal...wall decorations
and all. It may be small, but it's lighter, brighter, has Daniel's energy
floating around in there and just seems like "home" at Sunnyview. Besides,
he has his old roommate, Tony, back...it feels right. Daniel returned to
report he and Kim had tried him on the stationary bicycle but his knees won't
bend enough yet. That will be the next project for him to tackle. In the
meantime he promptly plopped on his bright yellow bedspread to kick back.
The bedspread turned up on his bed one day and is the only one we've seen
like it. We've kept it since it is so cheerful and matches the tie-dye
pillowcase Emily made for him.
Dr. LaBarge, the neuropsych, stopped by to let Daniel know he has given him
all the tests he has and Daniel passed with high marks. Dr. LaBarge figures
it may not be up to Daniel's standards prior to the accident but he should
keep improving. Daniel was so pleased because he often felt as though he
wasn't doing well. BUE group was, well, normal for BUE. However, lunch was a
special treat because Janet Jackson, one of my wonderful breakfast friends
from Julienne's stopped by. She is in New York visiting her brother and she
and her sister-in-law, Mary, brought by apples, apple cider, and apple
doughnuts. If you ever get a chance to sample apple doughnuts...just say
YES!
Daniel accompanied the three of us to Ellis Hospital for sandwiches and then
was off to Speech. Janet, Mary and I had a chance to visit before it was
time to whisk Daniel to the pool. Speech is from 1:00 to 1:30 on the third
floor, while pool is from 1:30 'til 2:00 on the second floor. I pick Daniel
up at exactly 1:28 and he undresses in the elevator and hall as we rush to
get him there before the pool floor goes down...if you're late, you're out of
luck. We all applauded his much improved backstroke before Janet and Mary
had to leave. So, so nice to see a familiar California face. OT included
measuring finger strength and completing a nine hole peg test for fine motor
dexterity. Tracy was only two seconds faster than Daniel ("and she's fast,
Mom"), so he was feeling pretty proud. Speech followed and Dee and Daniel
read from George Orwell's 1984 to see if his writing was consistent with
Orwell's essay on language they had read previously. (Sorry to have missed
that lesson but I was in Daniel's room reading People magazine.)
Recreation completed Daniel's therapies, where he filled out a questionnaire
on his favorite leisure activities. They are looking for anything high risk
so they can work on coping strategies. I thought of a high risk
activity...debating with Jim. Coping strategy...don't take the bait. The rest
of the afternoon we lounged in his room, dining on doughnuts, reading Harry
Potter, watching Friends and talking on the phone with Daniel's Grandma,
sister Emily and Jim. All in all it was a very nice day and Daniel's last
Monday as an in-patient at Sunnyview...amazing. Love to all, Toni
Wednesday, September 25th, 2002
Sorry about yesterday...two glitches; Daniel encouraged me to leave so I
could get some rest but I noticed he was very quiet. He admitted he was
feeling a little lonely so it was an easy choice; I stayed another hour. It
gave me a chance to rub his back and finish another chapter of Harry Potter.
Then, when I got to Fisher House someone else was using the computer...hard
to believe!
So, tonight I will give you two days in one (mostly because I lose track of
what has happened when). First, the most important news. The neurosurgeon
will be scheduling Daniel's bone plate replacement tomorrow. It could be as
soon as Monday or as late as the end of October. I'll let you know as soon
as a date is set. Daniel is excited and nervous.
Second, the most exciting news; Emily is flying in tomorrow to spend time
with us. It will be a chance for her to meet all of Daniel's therapists and
attend his sessions. Plus, it gives me a great excuse for more photos. She
leaves early Sunday morning but we are very eager to see her...we will have
most of Saturday to cruise after Daniel is discharged.
PT the past couple of days has included working out in the Wellness Center
(gym), where Daniel worked on his triceps and biceps (Daniel gets them mixed
up), tried the bicycle again (getting closer), and some other machine that is
kind of like walking with small circles and going up and down...(obviously I
don't know much about physical fitness either). Today in the pool he did
backstroke, freestyle and his version of a somersault...he had to tell us
what it was when he came up for air. Oh, and Daniel has graduated to a cane.
He even tried it on some steps (a bit scary to watch) and did pretty well.
By the afternoon his knees were tender so he went back to the walker...but,
very encouraging.
Tracy and Daniel walked all the way to Ellis Hospital gift shop for OT today.
This is a very long walk and Daniel only had to rest once. They're working
on pacing and Daniel being able to recognize his limitations. Which brings
me to the next bit of information...I walked in yesterday and Daniel was
completely dressed except for his socks which were simply draped across his
feet. With the most pathetic of looks he asked if I would help him since it
is still very difficult to bend his knees to get them on. I, of course,
helped him. Only later when I related the story to Tracy did she tell me, "I
saw him get dressed after pool yesterday and can do EVERYTHING, including
socks, on his own!" Boy, was he busted...he grinned sheepishly and told me,
"I can do it, but it's easier if you do it." (No kidding...wouldn't we all
like a personal handmaiden?) Guess, who hasn't asked for dressing help
since? Guess who wouldn't get it even if he asked?
I know he's been to Speech and Recreation Therapy and we talked about what he
did but my mind is drawing a blank. Mostly he and Dee have conversations
that are way over my head in Speech and work out word puzzles that baffle me.
We did play Guesstures last night with a group of patients, volunteers,
parents, and therapists. Lots of laughter, fun and teasing each other.
(Daniel's Rec Therapist, Kim, sent word he had to come and be on her team.)
I was on the other team and although we lost I awarded us the Congeniality
trophy.
Emilie, Sarah and Mandy came to visit from Bard this evening. We went to
Friendly's (think Bob's Big Boy) for dinner and ice cream. We all agreed
three scoop sundaes should be outlawed as we scraped the bottom of our
dishes...self-restraint being in short supply. Daniel has an open pass from
now until he is discharged so he can go out evenings. We're getting so close
to normal it's scary.
Tonight we finished the last Harry Potter book. We certainly wish the next
book would come out soon. I know Rowlings got married and is pregnant but,
really, she needs to get her priorities straight. We need another book! In
the meantime, we are taking any and all suggestions for further
reading...nothing too dark or angst ridden. (We've had enough of that in
real life the past few months.) Until tomorrow, we wish you sweet dreams and
peaceful days. Love to all, Toni
Thursday, September 26th, 2002
Wow, today was a very busy and full day. Daniel had PT early and was already
doing mat exercises when I arrived. His early start had to do with the fact
that he had a day pass to come to Fisher House and meet Mrs. Fisher in
person. She came by for an hour to meet all the residents here, thank all
the volunteers and check in with Jerry, the manager,...(one of the kindest
men you could hope to meet.) There was a fire in the fireplace, fresh baked
goodies on the kitchen counter and we hated to leave. Mrs. Fisher was so
nice; we all got pins and Daniel got a Fisher House baseball cap that looks
terrific on him. We continue to be overwhelmed by the generosity of everyone
with whom we come in contact.
On the way back to Sunnyview we stopped at Taco Bell to tame Daniel's craving
for fast food. He went directly to Speech where they played word games,
followed up with PT and more of the gym equipment...you ought to see Daniel
flex his muscles. Kim also gave him a "ride" on the tilt table and Daniel
admitted it was a bit scary. He was afraid the Velcro straps were going to
break and he would land on his head. We're going to see if he can try again
tomorrow so I can get a photo.
In OT Tracy stretched out his shoulders, which Daniel says is a wonderful
exercise, and then he massaged her shoulders...(to increase his fine motor
skills in case you wondered.) Either that or he has the smoothest therapist
in town.
For Rec Therapy he played cards...Speed and Slapjack. He reported he won at
Slapjack and lost at Speed. When I offered to play Speed with him he said,
"Oh Mom, I think you'd probably just get frustrated...we go pretty fast." (I
considered beating him with his cane but reconsidered when I realized we were
in a hospital filled with mandated reporters.)
As soon as all his therapies were completed we were off to the airport to
pick up Emily. What a treat...it seems like ages since we've seen her. We
celebrated by going out to dinner at Perrino's, a wonderful little Italian
restaurant about a block from Sunnyview. We finished in time for Daniel to
shower and catch the fall premier of Friends. Tomorrow Emily gets a chance
to meet Daniel's therapists and watch his last full day of in-house
treatment. Timing is everything.
Finally, Daniel's bone plate surgery is scheduled for October 21st with the
neurosurgeon. Daniel and I will consult with the plastic surgeon next Friday
to see if he will do any repairs at the same time. Before the surgery we
have to schedule an appointment with the Infectious Disease doctor to see if
the infection that was resistant to antibiotics is completely gone. We also
called Dr. Tamayo's office to set up the aorta repair (for those who
understand the difference it is a transection not a bisection). The bone
plate surgery will serve as a stress test to see how Daniel tolerates a less
invasive surgery before the more invasive aorta surgery. We will talk more
with Dr. Tamayo and get a firm date later next week. He did say Daniel needs
to eat foods rich in iron. (Does anyone know what these might be?) This
also gives us time to put some more weight on the boy...although tonight he
hopped on the scale and weighed 117. For Daniel that's hefty and he was
thrilled.
Now it's late and Emily and I want to get an early start tomorrow so I'll say
goodnight. We send our love to all, Toni
Friday, Sept. 27, 2002
Daniel's last day at Sunnyview...hard to believe but also great! It was a
day filled with lots of good-byes, address exchanges and hugs. We won't
miss the setting but, as always, we will miss the many people who have a
special place in our hearts. In a short two months Daniel has gone from
having to be lifted in and out of bed--to walking. I am amazed at what
everyone at Sunnyview has helped him accomplish. He starts outpatient rehab
next Tuesday with a new PT therapist (we wanted to keep everyone but
apparently it is not possible), and he is on a waiting list for OT.
We found him dressed and watching Teletubbies this morning...(my, there is an
interesting program). With Emily and me in tow he was off to PT where we had
plenty of photo opportunities. He walked down the stairs to the "big" gym
where he showed Emily how he could get in and out of the tub, walk on a
balance beam, and work out on several of the fitness machines. He finished
by flexing his arms with the words, "Look at these guns, bam, bam." Mind
you, his upper arm is about the size of my wrist but he is moving in the
right direction.
For afternoon PT, Daniel and Kim were the only two in the pool. They floated
on noodles, danced a little and did some very unique water ballet. I have
pictures to capture the moment. Kim rows competitively and we hope to cheer
her on a week from Saturday...first we have to figure out how to completely
embarrass her (shouldn't be too hard, we've had lots of practice). Kim told
Daniel she had never had a patient quite like him and she's been doing PT for
nine years. (He is certain it is a compliment).
I dashed to the store while Daniel and Emily visited so he would have
ingredients for his OT cooking. Quesadillas were on the menu and turned out
to be quite tasty. The tortillas were too big for the pan so Daniel trimmed
the outside circle, which we used as tortilla crafts...necklaces, visors,
etc. Daniel prepared the first one, cut it into sections, placed it on the
table, and promptly sat down to eat. I subtly suggested he offer the first
one to Tracy and Emily, and THEN cook one for himself. I'm not sure he
agreed but my penetrating mother's stare did prevail. Perhaps, there is
outpatient rehab for basic manners 101. We also had another therapist drop
by to gently suggest we turn on the fan and close the door to the kitchen,
since the smell of burning (just barely) tortillas might set off the fire
alarm.
Cooking seems like such a simple task but by the time he was finished Daniel
was truly spent. In evaluating the time in the kitchen Daniel agreed with
Tracy that he should sit whenever possible to do tasks, and take small rest
periods when he begins to get tired. What basically happens is he gets so
excited he kind of dances around the kitchen and pretends he is losing his
balance to tease her. At this point his spirit has more stamina than his
body.
Emily accompanied Daniel to Speech and reported Dee suggested Daniel keep a
notebook where he writes every day. She thinks he is introspective, and it
will help him to see his progress while giving him practice for when he
returns to college. She also suggested he read every day, and begin with a
book he has already completed. It will improve his skills as he gets back in
the habit of reading independently, without the frustration of having to
concentrate so hard to keep all the details straight. It's a way for him to
gradually ease into academia.
My treat to Emily and Daniel for the last day was a "hot stones" massage for
both. Think regular massage, followed by smooth hot stones rubbed gently
over the same areas, so heat seems to penetrate all your muscles. I had one
on Monday and it is truly wonderful...so relaxing. And...surprise of
surprises, we all seem to have knots in our shoulders and backs. Who would
have guessed?!
After Daniel's shower and an episode of Will and Grace, Emily and I tucked
Daniel into bed for his last night and trundled down the hall, loaded with
all the paraphernalia we had packed earlier. We left some of the posters
because his room was just too bleak with bare walls. By tomorrow morning at
10:00 a.m. we'll be checked out and on our way to Fisher House to await
surgeries, and begin phase three of this incredible journey.
Every day we feel your support, love, prayers and positive thoughts. It is a
gift that makes a huge difference for our whole family...thank you. Love to
everyone, Toni