Saturday, September 7, 2002 10:15 pm Today I arrived to find Daniel's bed empty but went searching and found him in his gait group. With his walker and a PT therapist, he left the gym and walked the hall all the way to the stuffed bunnies on the pediatric ward (this is a long way). Later, he walked down to do laundry again (homework), and walked back to the room. He was so pleased with himself and worn out. We gave him a breathing treatment and a nap. For his weekend Functional Communication Group, they played Outburst and Daniel had a great time. He does seem to have an advantage for anything verbally competitive...does this surprise anyone? He finished his weekend therapies with the Posture Group. We love weekends because the pace slows and gives us time to catch our breath. With time on our hands, we went cruising Schenectady to see the sights (this is a reframe for getting lost). But...we did see some beautiful neighborhoods and a downtown that has seen better days. We were singing to Carole King in the car...memories of my college days. Daniel thinks I sing well which is how we know he has not completely recovered from his brain injury...(singing with enthusiasm comes easily, the tune does not). We went back to the hospital for more rest, watched the U.S. Open semi-finals, (hurray for Sampras and Agassi), and did an hour on the leg machine. We took off for the airport to pick up my sister, Teri, and see pictures of our gorgeous new "cousinette", Abby Merchant. We even ate out at a "real" restaurant and got back to Sunnyview by our 8:00 curfew. As we were leaving Daniel was watching "Charlie and the Chocolate Factory". All in all, a very satisfying day. Love to everyone, we miss you all! Love, Toni
Sunday, September 8, 2002 8:30 pm Today began and ended with a
shower for Daniel...and have we got that routine down to a science. We roll
down the halls in a special shower chair, a plastic trash bag taped securely
around his "pik" (pic?) line and ten minutes later he is the cleanest patient
on the floor. The pic line is in his arm and has been there since Albany
Med. It allows them to draw blood etc. Sometimes we stop on our way and
make a special request of the nurses, however only Daniel can reveal what
that is all about.
When we left Sunnyview we took a walker and his wheelchair with us and our
first stop was Starbucks. I pulled to the curb and with Teri's help, Daniel
was able to use the walker and go inside to an easy chair while I parked. He
was breathing heavily and declined my offer to have him walk to the counter
to choose a pastry. Actually, it was more a look of, "Are you nuts? I'm
ready to pass out here!" We had a nice, relaxing time and it was great to be
out. It was on to the Fisher House where Daniel promptly took a two hour nap.
This gave Teri and me time to go grocery shopping and plan a home-cooked
meal. Actually, Teri planned the meal, did the cooking and I helped put the
name tags on the groceries. In other words, we each did what we do best.
Laundry, crossword puzzles, and People magazine were our activities 'til
Daniel awoke. Then we had time for him to stretch out on the couch so I
could massage his back, legs and feet. In the early evening we all sat
outside in the shade while Teri and I regaled Daniel with stories from our
youth. We confirmed what he already suspected...we have never been cool. We
even sang the patriotic medley from his days at Albany Med. We finished our
time at Fisher House watching most of the U.S. Open before we had to head
back after the third set. Luckily we arrived just in time to see Sampras win
(although we also love Agassi). Teri brought two new Diana Krall CD's and we
left Daniel nodding off to her soothing voice. Nothing and everything
spectacular considering the journey we have been on. Love to all, Toni
Monday, September 10, 2002 This morning we arrived and found
Daniel lounging in bed reading all his e-mails. Since this is unusual, I
asked him why he wasn't up yet? His reply, "Tracy hasn't come by to dress
me." Tracy is his OT therapist and has taught him to dress himself. I
suggested to his lordship that perhaps he might surprise Tracy and be dressed
when she arrived. He lamented that he didn't know where his clothes were and
I directed him to his dresser. He was in brushing his teeth and shaving when
she came by. Picture a young, petite, blonde in hot pink pants and a cute
T-shirt...pushover, right? Not on your life! She made sure he had done
everything himself and when we admitted we had helped him with his socks she
was off to retrieve a "sock-aid" so he could learn to do it himself. Off came
the shoes and socks and he made the attempt solo...I continue to be amazed at
the gadgets they have designed.
For afternoon OT, they went shopping at the gift store downstairs and Daniel
is the proud owner of his own "grabber." Picture one of those parrots on a
long handle that you buy at the fair and when you squeeze the handle the
mouth moves...only there is no parrot just some rubber metal arms to grab
clothing. Daniel followed OT with a Neuropsychiatry appointment where he was
tested on his memory. Dr. LeBarge told him a story and asked him to repeat as
many details as possible later in the session. Apparently Daniel did well
because he said he didn't feel stupid this time. In comparison to what...I do
not know. Climbing stairs without assistance or using handrails was the order
of the day for PT. Daniel tried it with a cane and even with assistance it
was very awkward. Kim demonstrated how to do it with crutches and both Teri
and I thought, "This will be much easier," because Kim made it look so
simple. Talk about a shot of reality. Crutches were even harder for Daniel
and we held our breath as his legs buckled while he struggled down the
stairs. This task will require some practice. Afternoon PT was once again in
the pool where Daniel entertained us with his Electric Slide and Michael
Jackson moonwalk moves. (Picture these in VERY slow motion).
After listening to the new (to Daniel) Diana Krall CD, he quizzed Dee, his
Speech Therapist about the meaning of Frim Fram sauce and shipoppa (sp?).
Michael Hawkins, do you know what these mean? Daniel does. Dee and Daniel
researched it on the computer during his time with her. She is also a fan.
So, not only is Daniel listening to and enjoying all the Diana Krall CDs,
he's checking the etymology of unfamiliar terms. This is so Daniel.... We
watched "Harry Potter" which took us through the leg machine and dinner. Then
it was shower time and lights out. We left Daniel nodding off to Diana Krall
and I'm certain he was asleep before we left the parking lot. Love to all and
we wish you restful days, Toni
Tuesday, September 10, 2002 Well, let's see if we can get an update out tonight. It's taken us more than 24 hours to mail the one for Monday - we're not sure if it's the computer or the phone lines, but the message not only did not go through but wouldn't save - so I've typed it three times. Oh well, what else do I have to do? Now on to Tuesday! We came in this morning and Daniel was all dressed--the boy is a quick study. Nothing was scheduled until 11:00 so Teri introduced us to the wonderful (or frustrating, depending on your point of view) world of crossword puzzles. Although Daniel and I had some difficulty getting the hang of it, Teri loved to see how our minds work...scary, huh?! The big news today is that Daniel's discharge date has been set for September 28th. The push is for him to use the walker or a cane exclusively and build his endurance in the next three weeks. With this in mind he "walked" to as many therapies as possible today. He has a red, convertible Porsche walker (the only one he will ever own) and he took it on a stroll around the gym just to be cool. In the afternoon he did mat exercises with weights on his legs to build muscles. He also kicked the beach ball (I got to be the pitcher) to work on balance and coordination. At one point we almost had Kim and Daniel on the floor. For Recreation Therapy they planned questions for his field trip to Albany Airport and then it was lunch time. After lifting the lid on his main course we decided to go to Ellis Hospital (connected to Sunnyview) for our meal. Not gourmet, but edible...a step up. We dropped Daniel off at Speech and made a trip to the Medicaid office because all the phones, including pay phones, were down in the hospital all day. Does that seem safe? Besides, we needed a dose of bureaucracy. When we got back he had been whisked to Ellis to get his pic? line removed. He is now tube free. Starting tomorrow he will graduate from the posture group to the BUE group. This stands for something I can't remember but they assure us it is a promotion. Maybe it's building upper extremities...he's going to be doing weights. Daniel keeps saying, "They're going to PUMP ME UP!" Daniel and Tracy were going to go shopping for OT but neither had money and all of ours was at Medicaid. They practiced walking on uneven surfaces instead. Tomorrow they are planning a trip to the grocery store for quesadilla ingredients. We played Yahtzee while Daniel's leg machine did its magic, had dinner, shower, meds and bid Daniel goodnight. His roommate checked out today and no one checked in so he gets to enjoy the luxury of a room to himself for the night. We are just looking forward to bed...Take care, Toni
Wednesday, September 11, 2002 Yesterday we arrived with a plate of
Whoopie Pies, compliments of Marilyn, one of the Fisher House volunteers. If
you haven't tasted one you are truly missing out. When we arrived this
morning there were only two left...Daniel found they are just fine as a
breakfast item. They will certainly help to put on the pounds.
He was already dressed and with no therapies until 10:00; he took the time to
do his Speech homework--reading George Orwell's essay on "Politics and the
English Language." Pretty convoluted piece but Daniel waded through
it.
For PT, he walked with a cane, did mat exercises with two pound weights on
his legs and then was fitted for a leg brace. This involves making a cast of
his left leg with fiberglass and then a brace will be made that fits exactly.
(Should make a great table lamp when we're done). The reason for this is
Daniel has "drop foot" and drags his left foot a bit when he walks. This
will keep his leg and foot at a 90 degree angle (and even eventually have a
spring) so he doesn't trip himself up. Afternoon PT pool activities included
balancing on the foam "noodles" and bicycling around in the water.
Daniel is now forcing himself to drink Boost two to three times a day. It is
a diet supplement that comes in chocolate, strawberry and vanilla and is
chock full of vitamins, protein etc. We have found that the colder it is,
the more palatable it is. They say milkshake in a can, we say disguised
Ensure.
In Speech, they went over Daniel's homework. Dee introduced Daniel to the Nat
King Cole Trio, and they worked on Michael Hawkins Latin phrase...no luck
yet, but Dee is bringing in a Latin dictionary tomorrow. The functional
apartment provided OT activities. This is a living room, kitchenette,
bathroom and two bedrooms where patients practice skills they will need once
they leave Sunnyview. Apparently Daniel practiced putting on and taking off
a towel and going to the bathroom using only one handrail (he told me to put
this in even though I suggested it probably came under the heading of "too
much information"). Most of the day Daniel used the walker only and by 4:00
he was exhausted. He just had time to request Tylenol for aching legs and
headache where the bone plate is missing when he was summoned for a CT scan.
Off we went to Ellis Hospital for picture taking time. This is so the
neurosurgeon and reconstructive surgeon can see exactly what it will require
to replace the bone plate and repair Daniel's jaw, eye socket, nose, and
cheekbone on the right side of his face. The surgeries may have to be done
at the same time depending on what attaches to what. It looks like we will
probably be having the surgeries back at Albany Med due to Medicaid,
insurance etc. The bone plate and face come first because they are less
invasive than fixing the tear in the aorta. They will serve as a kind of
stress test to see how ready Daniel is for the second surgery. However,
there are so many variables and combinations that nothing is set in stone
yet. We are very confident in the surgeons and still hold our collective
breath at the thought of more procedures. It is scary.
On a positive note Daniel received calls from Emily on Catalina Island, his
cousin Amy in St. Louis, and Jim. It is always wonderful to talk to family
and friends. He also officially received his green tag and can now leave the
floor without a chaperone...not that he's really up to cruising but it's nice
to know he can. We also bid adieu to the leg machine (yes!) and Teds
(stockings that go above the knee and are harder to put on than a pair of
panty hose two sizes too small). I have rambled on tonight and I give credit
to all who are still hanging in there...thanks to everyone for your support,
it means the world to us. Love, Toni
Thursday, September 12, 2002 We got a late start today due to the
fact that I decided a trip to Albany Med Emergency was needed about 5 a.m.
Nothing serious, let's just say I am now on some antibiotics and drinking
TONS of cranberry juice. However, it was about a three hour adventure so I
came back to Fisher House and slept in until I was feeling better.
A meeting was scheduled with Dr. Shapiro (Daniel's main doctor at Sunnyview),
Dr. LaBarge, his neuropsychiatrist, and Donna Davidson, his Social Worker.
Basically they went over the progress he has made, what he still needs to
work on, and where some of his deficits are now. Dr. LaBarge will wait on
some of the testing until just before Daniel is released so he can make the
most up-to-date assessment. Good people, good meeting.
By checking the signs in his room, we noted the obvious: Daniel had managed
to get dressed, get going, and eat without us. He did mention that it was
pretty boring at lunch. (And I thought all my wit and charm had gone
unnoticed). For OT he trekked to the cafeteria where he had a root beer.
Following OT he was on his way to Albany Airport for his field trip where he
threw up his root beer. Apparently the motto, "slow down" pertains to
drinking as well as thinking. It sounded as if they just barely made it out
of the parking lot before his "accident," so the field trip will be
rescheduled. We spent the extra time napping, and reading Harry Potter (hey,
I just found the underline icon). Since I was still feeling the effects of my
morning ER trip, Daniel graciously permitted me to share the bed while Teri
read to us. Wow! She's great...lots of expression and she can pronounce all
the words. Daniel and I have voted her our official reader for the rest of
her visit. She has provided Diana Krall CD's, crossword puzzle expertise,
and lots of good laughter and love. I can't believe tomorrow is her last full
day...it's been fun.
I'm off to bed now and certain Daniel has already been dreaming for about an
hour. Walking wears the boy out, but he is building endurance, which is
wonderful. Love to all, Toni
Friday, September 13, 2002 We arrived to find Daniel chuckling
over a package sent by Meg Wilburn. She sent a very funny book (but I can't
remember the title) and an article about IN-N-OUT burgers, so Daniel could
show New Yorker's what GREAT burgers are all about.
Daniel's leg brace arrived and it fits very well. He can bend his left ankle
now, so he is able to walk heel/toe. He is very excited because until today
he has been using his right foot as you would normally for walking, but
picking up his left foot as though he were climbing stairs to avoid dragging
it. Big improvement.
We decided to make today photo day for Daniel at Sunnyview. We spent time
taking pictures of Daniel with lots of the staff so we can put together a
scrapbook when this is over. Other than that it was a pretty typical day. Two
sessions each for PT (pool and mat exercises), Speech (origami and French
words), and OT in the afternoon. (I was napping and missed OT so I'm not
exactly sure what they did.) Teri says they worked on putting on the leg
brace - very tricky, since Daniel can't yet bend enough to put shoes and
socks on without some assistors - and now the brace goes on before the shoe
and fits inside it, making the shoe even more awkward to put on.
We spoke with the plastic surgeon and Daniel has an appointment on October
4th. He will definitely have the bone plate replaced before we return to
California but plastic surgery will probably wait for at least a year. The
window of opportunity for putting the facial bones back in place was two or
three weeks after the accident. Since they have essentially healed it will
require re-breaking the bones or building up the face with implants so it
will appear symmetrical. We will know more after the plastic surgeon meets
with us, sees Daniel in person, goes over the CT scan and can let him know
what the options are...much more complicated now.
Teri read more of Harry Potter to us during the afternoon break...very
relaxing. Next came dinner and the video, "Nobody's Fool" with Paul Newman.
Guess who picked the movie, Daniel or me? It was such a nice ending to the
day we decided to forego the evening shower...we figured being in the pool is
just like taking a bath anyway.
This weekend Daniel is expecting friends from Bard to visit and other than
that the only definite activity on our calendar is a LONG nap at Fisher
House. We are so looking forward to Sunday. Happy weekend everyone and take
very good care of yourselves...we all need it. Love, Toni
This has been an amazing week - full of discomfort and persistence and
conquest and grins and laughs and heart - and hope and optimism. Daniel is
working hard and improving every day. His therapists and nurses and doctors
are working hard to integrate every facet of Daniel's recovery - physical,
emotional, mental. Toni is so focused. She misses nothing, asks lots of
questions, and is unfailingly observant and appreciative. It's fun to watch
her interactions with everyone who comes in contact with Daniel and touching
and funny to watch her relationship with Daniel. What a great family! Love,
Teri