Saturday, September 28th, 2002
I began this morning with the most intense feeling of hope and expectation.
When my mom and sister arrived, the nurses promptly informed my mom about the
massive amount of prescriptions I'm still taking. Then the last couple
posters came off the wall and the three of us headed out for
Starbucks.
Leaving Sunnyview wasn't very sad; the hard part about leaving happened
Friday when I saw all my therapists for the last time. I'm really going to
miss Tracy (who I possibly might see in outpatient therapy), Kim, and Dee.
The three of them have been so good to me and I hope to keep in contact with
them.
At Starbucks my mom and I got drinks and pastries as breakfast (since I had
thrown up the horrible food at Sunnyview I very much needed some extra
breakfast), and then we headed to Crossgates Mall to see Sweet Home Alabama.
My mom and sister liked it a lot, and I liked it too although I had expected
it to be funnier. But it's a good romance with amazingly gorgeous people in
it. Check it out yo!
Today I talked like a Teletubbie to entertain my mom and sister. My mom
thinks the Teletubbies would have fit in very well in the Brain Injury Unit
at Sunnyview. Which I have to admit is a pretty accurate assesment, even
though the Teletubbies would at least be cheerier than most patients.
I have to admit that today has been somewhat anticlimactic. I was sort of
imagining that there would be a huge parade in honor of my recovery outside
Fisher House, but alas no one was there. Having my sister make goofy faces
and mutter crazy thoughts was a good substitute for a parade though.
Tonight I sleep in a real bed for the first time in 5 months. Hooray for a
mattress!
Sunday, Sept. 29th posted 4 pm PST
I woke this morning before the alarm went off at 5:15 so that my mom and
sister could get ready to go to the airport for Emily's plane trip home. My
mom returned to find meinstant messaging in the dining room at Fisher House,
and we both went back to the bedroom to get more sleep.
Then we made a shopping list to stop our frequent eating-out binges. But
when we left for the store, we decided to go to an apple orchard instead. A
much better use of our time,especially since we bought some freshly made
apple cider donuts at the orchard store. So incredibly good. If you ever
have the chance to get one, do it. Fast.
Then we came back to Fisher House and watched bad TV like Extra and the last
15 minutes of Turner and Hooch. Right now my legs are pretty sore from all
the walking today, butat least I'll have a chance to get to bed early
tonight. Huzzah!
Monday, September 30th, 2002
So, obviously I am going to have to do some of the updates since Daniel
failed to mention that yesterday morning I made him scrambled eggs with
cheese. (For those of you who know of my cooking prowess, this is a big
deal.) We also bought groceries for me to prepare meals for the next few
weeks in our attempt to fatten the boy up.
After Daniel sent yesterday's update we were surprised by a phone call from
Tom and Debbie Landes to welcome Daniel "home" from all his hospital stays.
What a treat to hear voices from California! Daniel gave the thumbs up to
give out the phone number at Fisher House (this rings in our bedroom). It is
518-626-6921. Quiet hours at Fisher House are from 10:00 p.m. to 8:00 a.m.,
since all guests here are facing personal hardships and need rest. (Daniel
also has a crabby Mother who gets really mean when the phone rings after
hours!)
We have come to the conclusion, after our first day of freedom, that we need
to come up with some sort of routine or else we risk becoming the world's
worst couch potatoes. After sleeping in until 9:00 a.m., eating
breakfast--Total Raisin Bran (for iron and other benefits), a banana and the
last of the donuts we promptly headed back to bed and inane TV. Are any of
you familiar with The People's Court, 5th Wheel or Blind Date? They are
several steps down from soap operas...so bad we laughed out loud until we
realized we had wasted one and a half hours of a gorgeous day.
After threatening to call Jim (Daniel said he wasn't going to shower again
until he returned to California), and Tracy, his OT therapist from Sunnyview,
(Daniel whined about putting on his socks), we were dressed and ready to
venture out. Our first stop was Enterprise to renew the car rental for
another month and reassure them we hadn't sold it on the black market. With
directions from the very nice Enterprise man we headed to Barnes and Noble,
Target and Staples to practice shopping. We also discovered an Eddie Bauer
outlet and each of us bought a sweater (in New York they have "real" weather
where it stays cold for an entire day). Barnes and Noble provided books (so
our minds won't turn to mush), Staples supplied storage boxes, and Target was
our source for batteries and hangars. Simple things bring us great pleasure
these days.
Daniel did very well in the stores. He manages with his walker as long as
there is a bench or chair for frequent rest stops. In Target he traded his
walker for a wheel chair at Customer Service, which helped a bunch. We
decided we will try and take at least one field trip each day...parks, lakes,
and Starbucks being high on our list.
Upon our return Daniel curled up on the couch to read while I attempted to
sort through all the letters, clothes, hospital goodies (think plastic dish
pans which probably cost about $50), games, books, presents and endless
paperwork. Emily took home a duffle bag filled with odds and ends, which has
been our practice every time someone flies out. It looks like we have
finally sent the last of Daniel's dorm room things and can start on Albany
items. In the meantime my goal is to make some sense of the clutter.
We ran out of milk right before dinner and since we were ready for bed I
jokingly asked Daniel, "So, if we run to the store, do you want to go in for
me?" His reply, "Sure, I can do it." As I watched from the car he hopped
into Stewart's (think 7-11) wearing his slippers, pajama pants, T-shirt, and
buffalo helmet, pushing his walker. I had to smile at how he embraces life
despite the new challenges.
Tomorrow is his first day as an outpatient at Sunnyview. We have decided to
spend some time in the Wellness Center (gym) once he completes PT, as part of
our plan to stay healthy and busy. We shall see how long we keep it up.
Daniel also has his Angels hat ready for tomorrow's game...in honor of his
California roots and fear of Michael Hawkins wrath. Take care everyone, we
love you and miss you...Toni and Daniel.
Wednesday, October 2nd, 2002
I first need to apologize for the lack of update yesterday. But there's a
perfectly logical explanation for its absence: my Mom and I were too busy
weeping for the Angels last night to trudge to the computer. Sorry MH, but
maybe their next game will provide better results.
Yesterday I had my first experience with outpatient therapy at Sunnyview.
After meeting with my case manager and registering downstairs, I was
evaluated by the physical therapist. Basically, the range of motion I have
in my knees is still extremely poor, and my left ankle is very, very weak.
But when I went back for PT today, the therapist told me that my muscle will
build up in my leg and I will be able to regain control of my ankle (thus
eliminating my need for a leg brace) sooner than I think.
We heard from the cardiologist today; evidently, I can donate my own blood
for any needed transfusions, but they also said that I've received so many
transfusions already that the risk of getting West Nile Virus is very small.
Plus, their blood bank is very safe. So I'm gladly passing on the
opportunity to get my arm pricked (yeech) another time and will just take
other people's blood.
Last night my Mom cooked this really good pasta: mushrooms, yellow bell
pepper, tomato, parsley, green onions, garlic, all sauteed and mixed into the
rotelle with ample parmesan cheese. We had leftovers tonight. And it's very
remarkable that my Mom is cooking, but she attributes her cooking to her
desire to fatten me up, which I am all for.
(Hello, it's Toni) Daniel just ran out of steam so I will complete the
report. Our field trip for today was a quick trip to the Brain Injury Unit
at Sunnyview to say "Thank You" and leave a small gift for the staff.
Daniel's bed is still empty (he thought maybe they were turning it into a
shrine), but we did get a chance to say hello to his old roommate, Tony and
hug some of the staff.
We found out from Jerry, the manager here at Fisher House, that there is a
store (like a PX, no tax) in the Veteran's Hospital. Since the hospital is
just behind the house we decided to take a field trip there tomorrow.
Stamina and fatigue play a very big part in determining what Daniel can
handle. Sometimes we get part way down the sidewalk and he realizes his
energy is gone...so we head back inside. Rehab stresses listening to his
body and knowing his limits. Probably good advice for all of us (can any of
you remember the last time that happened for you? I can't).
Edith Leet from Emmanuel Church stopped by last night and brought us all
kinds of information on easy and handicapped accessible things to do in
Albany. It's a beautiful city and we hope to get out, even if it is only
driving, to see more of our home away from home. Everyone says the weather
is exceptionally warm for this time of year (high 70's, low 80's) but as
Californians it seems just right. Hoping to get home before the first
snowfall, however. Jerry also brought by some neat craft things to keep
Daniel busy...Who knows? The next time Jim, Emily and Betsy come to visit we
may just have homemade gifts for them.
With laundry in, dinner behind us, and pajamas on, Daniel and I are getting
ready to tackle a new game...Pass the Pigs. Sounds like we're making great
progress on our goal to include intellectual stimulation into our routine,
doesn't it? Thanks to everyone for their suggestions on food rich in iron,
and good books. We have already started on a couple of books and look
forward to more of your recommendations. In the meantime, take care, hug
each other and be as good to yourselves as you have been to us. Love, Toni
and Daniel
Thursday, October 3rd, 2002
Fall has finally arrived in Albany. Today the weather was super brisk, and
was a little bit of a shock for T-shirt wearing Californians. But this means
a frost is coming soon, which will make ALL the leaves turn vibrant like a
couple already have.
Today my Mom and I went to Sunnyview for physical therapy. I went to the
Wellness Center gym and used the elliptical for 3 minutes (which in reality
is a really short period of time, but I get exhausted easily) and then used a
recumbent bike. I tried the bike before, but my knees were too tight for me
to make a complete circle. Today however I was able to pedal consistently
for a minute and a half. After using the gym, my therapist Suzanne put a
cold pack to my right knee. (Toni sidebar: While Daniel was rehabbing I used
the treadmill AND read People magazine at the same time...oh yes, I can still
multitask when necessary.)
On our way home from Sunnyview, my Mom and I stopped at the VA hospital in
order to go to the Burger King inside and to visit the commissary that sells
items with no tax. I found a jacket that I like, and it's really cheap.
Unfortunately, it's not in my size so I'll just have to grin and bear the
cold weather for a while.
When we returned to Fisher House, we watched My Neighbor Totoro which was
sent to me by TKay for my birthday. It was really cute and the dust bunnies
in it were scary. (Toni sidebar: "It was cute but just a bit slow and short
on plot...although I don't think the creators were aiming for an Oscar.")
Then my Mom made scrambled eggs and microwaved some spinach souffle (high in
iron). We're going to tape Survivor tonight and watch Will & Grace and
Friends.
My Mom wants to add her two cents so I'll make my exit now. Take care,
Daniel
We also stopped at Starbucks for some hot chai and hot chocolate to warm us
up. While there we perused the newspaper and knew all would be well in
California at the Hawkins house since the Angels won yesterday. Daniel asked
what an RBI was, so I explained a few of the finer points of the game
(compared to Daniel I am a baseball wizard). Jerry, Fisher House manager, is
a Yankees fan and told Daniel he really needs a Yankee's hat now that he is a
temporary New Yorker. However, he's still wearing the red cap...not because
Daniel understands the game but because he is a fan of the Hawkins clan and
Dianne Salad.
Daniel and I have entered a pool for Survivor through the Laun family. We
each got to pick four contestants and then change one after each of the first
two shows. Unfortunately, since we are big fans of Friends we only watch
Survivor during commercials. So far I have seemed to pick contestants who
are either lazy, have a personality that irritates everyone else, or are
spoiled. However, even if we never watch the show the concept of winning
money for making a random choice is appealing.
Daniel is napping again...after helping prepare dinner and clean up he was
exhausted. Soon it will be bedtime, so I'll wake him to put on his pajamas.
Last night I had a nightmare (can't remember what it was about) and Daniel
came to calm me down in the middle of the night. Sometimes it's hard to
determine who is taking care of whom. He is a trooper.
Tomorrow we see the plastic surgeon so we will know exactly the extent of his
facial injuries and what the short-term and long-term plans will be. Daniel
is excited and nervous to find out the specifics. I would like the plastic
surgeon to pull out a magic wand...Good health, good wishes and good night to
all, Toni and Daniel
Friday, October 4th posted 7:30 pm
(DF) This morning I went to go see Dr. King, the plastic surgeon. Most of
the repairs for my face are cosmetic, so he's only going to tackle the bridge
of my nose during the bone plate replacement on the 21st. That will ensure
that my entire forehead is covered with bone instead of leaving only soft
tissue.
(TF) Dr. King explained that Dr. Emrich isn't sure if the bone plate will
cover all the soft tissue, particularly the spot at the bridge of Daniel's
nose, between his eyes. Dr. King will replace and repair any parts of the
skull not covered by the bone plate. Apparently the bone plate has two
layers and he will either use the under layer of the bone plate (I'm sure
this is not the medical way to explain it, but it's the way I understood it)
or he will take a piece of Daniel's hip bone for the repairs. Until the
surgery is underway he won't know exactly how much will need to be filled in.
The pre-admission workup and testing will be done at Albany Med on October
14.
Dr. King also pointed out that the space underneath Daniel's right eye was
pushed in so his cheek is a little sunken, his nose is off center and his jaw
doesn't close properly. The jaw repair is considered functional and must be
repaired, while the cheek, nose and eye may be considered cosmetic only. Dr.
King suggested an excellent surgeon in California to do the work and help
make Daniel's face symmetrical. He also recommended Daniel wait for about a
year until he is back at his normal weight, since that will also affect the
shape of his face.
The appointment was not at Albany Med as I had thought but at Dr. King's
private office near the mall. Luckily his office called to tell me he had
already seen the CT scan and I didn't have to pick it up in person. It would
be very Fox-like to be in the wrong place at (almost) the right time.
Unfortunately, I had told SICU we would stop by after the appointment
(thinking we would only be a floor or two away) but Daniel was wiped out by
the time we reached Fisher House. We are working with Annmarie (one of the
SICU nurses) to make a trip to SICU our first priority for a field trip next
week.
(DF) After that appointment and lunch, my Mom and I headed off to the mall to
return a pair of shoes that don't fit me and to pick up some gloves to combat
the chilly weather. Unfortunately, my cumbersome leg brace doesn't make shoe
fitting very easy, so we got a "against store policy" refund. Then we headed
across to Old Navy and I picked up a couple super cheap sweaters.
When we arrived back at Fisher House, I found a package for me in the mail.
The return address was from my house back in good ol' Arcadia, but I couldn't
recognize the handwriting as anyone's in our family. Upon opening it, I saw
the coolest Harry Potter quilt with the emblems of the 4 Hogwarts house
teams. And the Gryffindor logo is a flap, with my picture underneath it.
It's very cool, but is quite the mystery. Who, perchance, sent me this
awesome gift?
(TF) Not only is the quilt awesome but Daniel promptly lay down on the bed
and took a nap. What I am finding is that when he fades, he fades fast...it
is kind of like when he was two years old and hit his limit. The only remedy
is sleep. Our day often goes like this...Daniel showers, Daniel takes a
rest, Daniel gets dressed, Daniel takes a rest, Daniel walks to the car,
Daniel takes a rest while I drive, Daniel eats lunch, Daniel takes a nap.
(Being the very supportive mother that I am I often rest at the same time to
demonstrate my solidarity and oneness with him.)
(DF) Then my Mom and I got a snazzy idea to enter my aunt and my Mom on
Supermarket Sweep, a shopping game show. My aunt agreed but made my Mom and
I promise to enter Family Feud, which happens to be one of my favorite game
shows anyway.
(TF) Background...we were watching Supermarket Sweep (an embarrassing
admission if there ever was one), when we started figuring out who in our
family could go on it. My sister Sandi is the ultimate shopper (no store too
large or small), and although Jim does the grocery shopping at home he also
still has his pride. So, I was nominated. (Don't hold your breath waiting
for us to be on...both require filling out an application and I figure that
will be enough of a stopper right there. Anyway, I certainly hope
so.)
(DF) The last little tidbit of the night was my fall. My first one since the
accident. I stood up to write something down and suddenly grabbed for a
chair and starting to shake. The I fell backward onto the floor. Luckily I
was wearing my helmet and I'm all right now, but I'm for sure going to use my
walker even around the Fisher House from now on.
(TF) Yes, his fall scared Daniel and me both. However, his PT therapist,
Kim, would be very proud of us. Although Daniel could not get up from the
floor at Sunnyview because of his knees, we managed to have him roll near the
bed, get on his hands and knees, and use the bed to pull himself up, while I
supported him around the waist and chest. Whew! Nothing is as simple as it
seems...
(DF) And now it's time for dinner. XO, Daniel
(TF) Another gourmet concoction I prepared (don't ask).
Finally...I was overwhelmed with emotion as we left Dr. King's office
today...so relieved we were able to even have the conversation (considering
how close we came to losing Daniel), and at the same realizing this would put
us one step closer to actually coming home. Most of the time I don't allow
myself to really take in that reality because I don't think I want to face
how many months we have been gone and how much I long for family and friends.
And I was also struck by how many new people we have met in New York, that we
now count as friends. It will also be hard to leave them.
If any of you who read this page, leave a message, send a card, say a prayer,
or think positive thoughts ever question that you have made a difference in
someone's life, please know that you have. Every single day I feel blessed
and humbled by your support, comfort and encouragement. Love, Toni