Saturday, August 31, 10:40 pm Saturday's are half days for therapy so Daniel had an easy morning with OT, PT and a Functional Communication Group. (He had to be encouraged to speak up...go figure). However, it was a very full day of company, which is always a welcome surprise. Six students from Bard, who were at the scene of the accident, came by. Although we were introduced we will have to get Daniel to remind us of all the names. His short term memory may have been affected by the accident but he can still run circles around Jim and me. They were able to fill Daniel in on some of the details of the crash because he has no memory of the accident and it seemed good for them to see him joking and talking. Later, Emilie Richardson, Queenie, Christian and Diego came by. They were able to visit and experience Daniel throwing up in person. Emilie was so familiar with the drill that she handled it like a pro. Finally, Emily Sweeney and Brian Fallon from Albany Medical Center came by. Emily brought Daniel some homemade brownies (to die for, I might add). Daniel had a Dodgers T-shirt for Emily and a tie he won at musical bingo for Brian (who promised to wear it...so look for it on SICU). Brian and Emily were part of the team that saved Daniel's life. They both have a special place in our hearts. Daniel developed a cough and some congestion late this afternoon and into the evening so we stayed until he had a nebulizer (I'm sure that isn't even close to the correct spelling) treatment and then we came back to Fisher House. We are looking forward to bringing him to Albany tomorrow for a quiet day away from the hospital. It will be his first trip in a car since the accident. Goodnight and love to all, Toni and Jim.
Sunday, Sept. 1, 2002 Daniel got his pass and Jim and I arrived about 8:30 and left the hospital around 10:00--forms signed and his medicines in hand. It was a simple, relaxing day where we actually felt like a real family in a real home. We drove Daniel by Albany Medical Center so he could see it from the outside, took a quick driving tour of the apartment where we stayed on Morris Street, Stewart's (Albany's version of 7-11) where I shopped, and finally on to Fisher House. We made Daniel's favorite cheese potatoes for lunch, Whoopie Pie cookies for the SICU staff, Sunnyview staff, Nathan (Daniel's roommate), and Daniel. The rest of the time we slept, read, gave Daniel foot, back, shoulder, head (you get the picture) massages and enjoyed the peace and quiet. This will surprise no one but we were 30 minutes late returning...that old time management thing--but found out we can take Daniel out locally tomorrow afternoon. We will look for a park nearby. Hope your holiday was restful, love to everyone, Toni and Jim
Monday, September 2, 2002 8:30 pm Today Daniel had one session each of OT,PT (two laps around the gym with his walker), and Speech. The rest of the day was ours and we filled it with a walk around the block...the weather here is crisp, clean and in the mid 70s. We took turns, Daniel and me, reading Harry Potter (book 4). We watched "A Beautiful Mind" and took Daniel out to dinner. Stamina is still an issue and he is so thin (111 lbs.) that his tailbone hurts if he sits too long. However, he is a trooper and has the fine art of shifting his position down to a science. Jim and I,in the meantime, are learning the intricacies of folding a wheelchair and putting it into the trunk of the car...so far the score is wheelchair 3, Jim and I, zero. Daniel's music professor sent us a copy of a song Daniel wrote for the final program. His professor dedicated the program to Daniel and performed the song. We listened to it in the car and it was beautiful...what a treat! Back to a full day tomorrow, love you all...goodnight. Toni and Jim
Tuesday, September 3, 2002 8:30 pm This may stun all of you but we forgot to set the alarm last night and were it not for the dishwasher being run early, we might not have gotten up until noon. As it was we got ready quickly, phoned Daniel so he wouldn't worry and arrived in time for most of his therapy sessions: four times around the gym in PT...plus some work in the afternoon on the mat bed on his stomach and hands and knees to improve flexibility and range of motion. Tomorrow is Kim's birthday (his PT therapist). We are giving her a box of Shout because she always spills on herself (one of the reasons we like her so much) and a real gift to go with it. Next week they have planned a field trip to the Albany Airport to view the art work there and practice his PT skills in the "real" world. His recreation therapist, also named Kim, is going with them. For OT, Daniel's homework is to watch TV with his hands behind his head for increased range of motion. He also got elastic shoe laces today (they look like curly brown ribbon). For Speech, he is working on origami and brain teasers...Jim says some are really hard. One of the results of his brain damage is not having the executive part of his brain functioning very well. What this means is Daniel has to learn how to slow down and problem-solve better. Now he tends to blow through his work, do the easy ones and figure the others are too hard. Dee, the Speech therapist, is working with him to develop coping strategies to deal with this problem. Tonight Stephanie, one of the nurses from Albany Medical, came by. Daniel's first memory after the accident was waving goodbye to Stephanie. She is now a traveling nurse working in Maryland so it was such a wonderful surprise to have her visit...and she's just as cute and fun as we remembered. Tomorrow we will be taking Daniel to Albany Medical to see Dr. Kuehler. He was the first doctor I met and part of the Trauma team that worked with Daniel his entire stay. Daniel is eager to find out exactly what happened to him, learn more about the surgical procedures and ask a lot of questions. On the way back to Sunnyview we will be dropping Jim off at the airport to return to Arcadia. It has seemed so natural to have him here with us that it will be hard to say goodbye. However, we are getting good at it with all the practice we've had this summer. We also go on Thursday to Albany Medical to meet with Dr. Tamayo, the heart surgeon, so Daniel can find out how the tear is doing, and what to expect in the future. We are planning on visiting SICU to say hello to all the terrific staff there, but our visit will definitely be dictated by Daniel's stamina and his tailbone. It has come to my attention that since I have been doing the updates in person they tend to be MUCH longer...what can I say? Daniel comes by his verbal habits naturally. My sister, Teri, will be arriving on Saturday for a week's visit and she is an editor...maybe she can help. Happy first day of school for everyone at AHS and elsewhere. Take care, Love, Toni
Wednesday, September 4th, 9:50 pm Today we were greeted by Daniel
sitting in his wheelchair, completely dressed, helmet in place, grinning and
full of himself. He and Tracy, his OT therapist, had already finished
dressing him and he was on his way to brush his teeth. His therapy day was
shortened since we were traveling to Albany Medical but he did walk twice
around the gym with Kim on one side and using a cane with his other hand. It
is slow, painful and beautiful! He was exhausted but happy. He also did
some push-ups on the wall while standing in OT. They want to issue him a
"green tag" which will give him permission to eave the floor on his own.
There are several skills he must master, including transporting himself to
his therapies on time (no more wheelchair pushing from us when he tires),
writing down his schedule on his own, and making certain he goes to the
nurses station independently to get his medicine. He is down to 14 pills at
8 a.m. and 9 pills at night with a few odd ones thrown in during the rest of
the day.
Daniel's roommate, Nathan, was discharged today. We are so pleased for him
but will really miss Nathan and his mom, Linda. Daniel and Nathan were both
at Albany Medical at the same time and while they were in comas, Linda and I
became friends there. It has been so good to have someone to talk to about
the ups and downs of life at Sunnyview. Daniel's new roommate is named
Dennis and we met him and his mother and sister briefly. He is very nice,
has two sons and is very motivated to get home to his kids.
Dr. Kuehler at Albany Medical was wonderful as usual. He took lots of time
with us, answered all of Daniel's questions and walked Daniel through his
time at Albany Med. It helps Daniel to know the details of what his body
has been through. We all agreed it was difficult to hear about the night
Daniel was brought in and the description of part of his brain sort of
spilling out through the fracture. Dr. Kuehler also described for Daniel
the times when they were afraid he was going to die. He spoke of doing
everything they could, knowing it was no longer in their hands and hoping
their prayers and the prayers of everyone else would help with a miracle. I
have no words to describe how it feels to be so close to losing a child and
then being given the gift of his life being spared...and all of you, with
your thoughts, messages, support and prayers have been part of the miracle.
Thank you.
We were also able to stop by SICU briefly to see the staff and have Daniel
take some steps for them. Hugs were exchanged and then it was off to the
airport to drop off Jim. Good, sad, hard, fine...hello, this is our life
for now. We arrived back at Sunnyview in time to wrestle with the
wheelchair. Not only is it awkward to get out of the trunk of the car but
this particular chair refused to open. Daniel urged me to go for help but I
was determined to prevail...stubborn runs long and deep in our family.
We just had time to do the daily machine on his left leg (one hour to help
it bend and increase range of motion), dine on gourmet egg salad for supper,
shower and into bed. Daniel did announce his final achievement of the day,
"Mom, I peed standing up!" (I may have just crossed the line with too much
information). We love you, miss you, and send our love...Toni
Thursday, September 5th, 9:50 pm
Today Daniel was able to fit in four therapies before we traveled to Albany
Med. In PT, they used electric stimulus on his left leg because he has
"drop foot" on that side. What that means is when his foot is on the floor,
he cannot keep his heel on the floor and raise the rest of his foot. Daniel
said it was, "a little weird and kinda worked," so they will give it another
try tomorrow. He also had OT where they played games and he popped bubbles.
We were able to combine lunch and his leg machine before we left Sunnyview
with CAT scan in hand.
Dr. Perez-Tamayo, the cardiologist, spent nearly an hour with Daniel
describing for him the tear in his aorta. He went over the CAT scan and
also drew diagrams, which we got to take with us, describing the surgery in
detail. Although he has followed Daniel from his first day, he understands
how long we have been far away from home, so he also gave us the name of a
cardiologist at UCLA. It was daunting but so helpful for Daniel to hear how
much he been through and how serious it was. Dr. Tamayo described him as,
"one in ten thousand." He has been wonderful to us throughout this long
process. Next we went to the neurosurgeon who discussed with us the
possibility of replacing the bone plate in Daniel's head before we return to
California. It will require another CAT scan of the head and face and
consulting with a plastic surgeon to see what the options are in terms of
doing the surgeries separately or together. And, of course, insurance and
Medicaid (which is still pending) may make our decisions for us. At this
point Daniel prefers to return to California and have the aorta surgery
before the plastic surgery...and most of all I think it is just plain scary
for him to think of any more procedures right now. He is just learning
firsthand what we have been told from the beginning. He tries so hard to
keep up a brave front but I noticed a silent tear falling after we left Dr.
Tamayo. When I asked if it was a lot to take in, he nodded and more tears
followed. However, by the time we rolled into the next waiting room, he had
composed himself.
We did call Sunnyview after we left the last appointment
to see if we could get permission to stop at the Fisher House for a nap
since we were both pretty wiped out. They obliged and we were able to sleep
for an hour before we headed back. A family had made sloppy joes for
everyone at Fisher House so we had the added benefit of eating in the dining
room. Then it was back to Sunnyview, immediately into the shower, breathing
treatment, meds and bed. Now it's my turn for bed...We send positive
thoughts and love to all, Toni.
Friday, Sept. 6th 7:30 pm
Hello All,
Daniel was dressed and ready to go when I arrived, ate a
big breakfast (this is good, we want meat on those skinny bones), and was
soon on his way to Recreation Therapy. They planned the trip to the airport
which will include talking to American Airlines and asking for information
on what he will have to do if he has a wheelchair, or walker, or cane, or
bone plate etc. etc. This was followed by PT with more exercises to stretch
his knee and work on his leg flexibility and strength. Then we were off to
see the Social Worker who went over his progress report from Tuesday rounds
to see if Daniel agreed with the assessments of his therapists, nurses and
doctors. She asked our goals and Daniel replied he would really like to
leave Sunnyview sans wheelchair and walking independently with a walker or
cane. He also needs to be able to climb stairs so he can get into the house
(minor detail).
We whisked him immediately to Speech where they
are learning new vocabulary, foreign and latin phrases)to increase his
understanding of language. Then it was a break for lunch, and a quick nap
before afternoon activities. He began the afternoon in the pool where he
walked without a walker, sat on a kick board for balance, and finally tried
to rest his arms and chest on the kick board using his legs to propel
himself around the pool. A+ on the first two, and a butt and legs that sank
like rocks on the last exercise. We all laughed and he will give it another
try on Monday. He keeps teasing his PT therapist to touch his head where
there is no bone plate because it is "squishy" but no success so far. We
quickly got him dressed and it was off to Posture Group, followed by more
Speech and finally OT where he did laundry...all right! We were able to do
the leg machine before Emilie Richardson and Adam (his roommate at Bard last
year) arrived for a visit. After checking out his meal at Sunnyview, they
all agreed to go to the cafeteria at Ellis hospital (it is connected to
Sunnyview) for dinner. Daniel had a nice visit with them and they brought
the last of his boxes from storage so we can ship them home. Again, bath,
meds, bed and the soothing voice of Diana Krall.
Sweet dreams for everyone,
Toni