August
13
Hello everyone, Darren seems to think
it's "curious" that I send updates EVERY day. He asked "what do you
write about? I didn't do anything today." I tried to explain that so
many people just want to know how he's doing, what he's doing, and
how we are. What he doesn't see as anything "big" might be HUGE to
me. I try not to over-exaggerate, but I get excited at the littlest
things! Today, the occupational therapist said Darren should be
brushing his own teeth. I was so excited, since as the official
tooth-brusher, I didn't feel as if I was doing such a good job. But
he felt inadequate that he hasn't been doing it along. So tonight we
will try that! In addition to his feeding himself each meal, he fed
himself a handful of gummi bears, held a small milk container, and
was using his cell phone. Not very pretty to watch sometimes, and
hard to see him struggle, but worth every effort! He is excited to
watch the Olympics, and
has a busy week scheduled. So we will try to rest up this weekend so
he is prepared for more hard work. John was out with another dad for
dinner (yea!!!) and just brought me back a burger and a shake. Gotta
go......... Cindy
August
16
Well, I know you’ve all been waiting for
the latest on what’s going on in Atlanta. Even though the weekends
are slow, sometimes I just don’t feel like writing.
Let me start by thanking everyone for
participating in the Prayer Service. Especially Doris and Paul Zoch, Msg.
Carroll and Carol Gordon, for pulling it all together, everyone who
participated, and everyone else for attending. Its sounds like it
was a wonderful service, and I am anxious to see the videotape for
myself.
To back up a little, last Friday I took
Arianne to a local shopping mall. At first, it seemed weird to be
doing something “normal,” but then I relaxed and started looking for
things we wanted for Ari and Darren. It felt good to be out, but
after a few hours I was anxious to get back. The weekend was quiet,
as expected. However, on Sunday morning, I had some “hands on
training” in Darren’s personal care. Bathing, dressing, personal
care and positioning wore us both out, emotionally and physically.
The whole routine took us 2 hours, and Darren needed rest after
that! He was exhausted. Today was a new day, the start of a busy
week of therapy, classes, counseling, etc. This morning he was
learning how to put on a pair of shorts, and was told he made as
much progress as someone who worked on it for three sessions. He
doesn’t see the significance in that, but do you? I do! I know he is
really working hard each and every session. I met with a counselor
today who helped me see that each day has promise and hope. I need
to learn how to balance optimism with reality, good with bad,
positive with negative. We talked about making plans for home
modifications, and she advised to be as patient as possible, since
things (related to Darren’s condition) can change so rapidly. Easy
for her to say!
While Darren was at therapy this
afternoon, I went to the gym, then decided to take a walk outside. I
was in search of an ice cream cone, but never found one. I did find
a grocery store, so I stocked up on some food! When I returned, I
was hot and sweaty, and I find Darren bundled up under his fleece
blanket. It’s so strange to see him so cold, but a spinal cord
injury affects (among other things) the body’s ability to control
its own temperature. It’s something to always be aware of.
Enough for now – I’m sure I’ll have more
to write tomorrow. Thanks for staying connected, and I look forward
to return e-mails and messages. Cynthia
August
17
Hi everyone! You'll know when I've been
here awhile - I'll start saying "hey, y'all" like the natives!
Everyone here is friendly and loves to call all of us honey and
baby. It seems like family. Darren had a busy, tiring day. Let's see
if I can remember everything. First was an hour long class about the
respiratory system and how it is different than pre-injury. The
number one cause of death of SCI (get used to this - spinal cord
injury) patients is pneumonia. So its real important to prevent that
from happening in the first place. After class, he went to OT and
was working on sitting himself up and holding himself up as long as
possible. You can imagine how tiring that is. But he says its
getting easier. Darren also worked on putting on a t-shirt. He said
that was easier than before (I didn't even know there had been a
"before"). Lunch, then PT, where he tried a manual wheelchair for
the first time. Yea!! He could only stay in it for half an hour, and
he'll work up to more time very gradually. When a person sits in a
wheelchair for long periods of time, they have to do "weight shifts"
to distribute their weight off of their tail bones for at least 1
minute every half hour. Likewise, if they're in bed for prolonged
periods, they have to be turned periodically, and those times have
to be gradually increased as well. But back to the wheelchair -
Darren was able to push himself to his room, to show me, but I
wasn't there. :( I was
at the gym. Oh well, he'll try again tomorrow! His shoulders and
neck were prettt tired after that, and I massaged him as best I
could. After that he had a bladder test that I won't detail, and
then a session at "assistive technology" where he learned about a
computer program named Dragon something, which works on verbal cues.
Pretty cool. Darren was asked to try eating his lunch with his right
hand, which was difficult, but he managed. It took a lot of
concentration and a long time, but he was patient. Last night,
Darren was wondering aloud if he would be able to raise just the bar
used for free weights at the gym, and we both decided - ummmm,
probably not. He expressed some regret in having trained like he had
- what good is it now attitude - and I nipped that in the bud pretty
quickly by saying - thank goodness you WERE in such good shape
before your accident; that will help you now. He agreed, maybe
reluctantly, but he agreed.
Every day is a challenge, and while I am
happy to report his progress, it is so difficult to see him
struggling. But I try to stay focused, and be thankful for whatever
the day has brought. Thank you to everyone for cards, packages and
e-mails. We eagerly await the mail delivery, and we read everything.
I sift through my own e-mails, and share what I can with Darren
without overwhelming him. Short, positive e-mails with inspirational
messages are the ones I share, the others I keep to myself. But I
read them all, so keep them coming!
With love, hope and
prayers,
Cynthia
August
18
OK, my update tonight might be quick -
Darren was using the computer! He was checking e-mail and IM'ing his
friends. It is so good for him to stay in touch with his friends.
Last night, Darren & I shared some tears, and spoke of our fears
and worries. Mostly it was hugs and tears. I think he is protecting
me from his emotions as much, if not more, than I try to protect him
from mine. But last night we cried together. That prompted me to
seek out the Chaplain this morning, even though I was feeling much
better. He was very understanding, offering up some suggestions for
coping and healing. He said we need to cry and grieve, to let it
out. Otherwise the stresses will show up later as heart problems,
ulcers, etc. He explained that all of this is an unfolding process,
as Darren's body heals itself. We shouldn't consider fevers or
infections as setbacks, but a part of the healing. Rev. Ken thinks
that an incident such as this can be considered a tragedy or a
blessing - we choose which path to take. It can also be a re-birth,
and part of that re-birth can be finding a new spiritual self, one
that I haven't had in quite some time. I look forward to tha t.
Well, enough for my healing.... Darren didn't get back in the manual
chair today, but maybe tomorrow. Since his left arm and hand are
sronger than his right, the therapist has been encouraging him to
use his right more, like with eating. It is a struggle, as I
reported yesterday, but he's getting better at it. And tonight at
dinner I put a burger in his hands and he was able to eat the whole
thing. His arms and hands do all the work, since he still doesn't
have any movement in his fingers. But his wrist extensions are good,
and that is really helpful. Well, his spirits are good tonight - we
got a call from Lou Lamoriello, CEO of the Devils! He was so sincere
and genuine in his conversation, amazing that he made time to call
Darren. He told Darren and me that ANYTIME his spirits are down and
he needs a kick in the ass, to call him. He said to stay positive,
that the mind is all important now, and other motivational,
inspirational comments. He was great - thanks Shelley!!! That made
our day. OK, I did manage enough time to write everything I wanted,
and more. The opportunity to share my thoughts with you is part of
my healing, and I appreciate the opportunity. Love and prayers,
Cynthia
August
19
Our quiet room just got loud again (but
in a good way) with the arrival of John, Ari and Greg DeVries. They came with famous
Armenian rolls from the Feredjians (thanks Kathy!), famous
sandwiches from Taste of Reality (thanks Jim!) and lots of cards and
presents. Thanks to all who sent anything!!! Thanks also to the
anonymous sender of a balloon bouquet - it arrived without a card.
so please 'fess up so we can thank you properly. Today was another
successful day in therapy. Darren wheeled his manual wheelchair from
the therapy room to his room, so I could see him, and then BACK
AGAIN. We're guessing its about 50 yards each way so that's no small
feat! His therapist was happy, and so was he. Then he received
electrical stimulation on his back muscles while flexing his
shoulders, and that wore him out even more. The elec stim can be
used when the muscle is "firing," otherwise it can actually do some
damage. But the therpist says his left tricep is firing, so the elec
stim will be used on that in the future. He also ate a pork sandwich
for lunch, he just needed help getting in in his grasp. Once he had
his hand and fingers wrapped around it, he could bring it up and
down to eat. A little messy, but tasty. Last night, we had a very
special visitor. A friend of Trip (George) Winnie's in Kinnelon
(thanks Trip!) has a friend who lives in Atlanta now. He
called a few days ago and arranged to visit us last night. He came
and spoke with Darren and me for awhile, then treated me to dinner.
When he was a sophomore at Kinnelon High
School, Doug suffered the same injury
playing football as Darren has now. He was so inspirational and
motivational; so caring and compassionate. He has recovered fully,
even though it took him more than a year. So he encouraged Darren to
work hard, stay focused and never give up. He told him all the right
things. And dinner out was so wonderful!! It was truly a magical
evening, reminding us both to never give up hope. We could see what
IS possible. I am headed home for a few days, so Ari will be the
official "updater" for the next several days. I look forward to
seeing some of you (unfortunately I can only see a few people this
time) and being home in Kinnelon. With hope, love and prayers,
Cindy
August
20
I don't think I can make these updates as
detailed as Mom can, but I'll do my best. Darren was very, very busy
today. After morning therapy we had surprise visitors- Julie
& Alex Kramer. Darren and Alex used to be very good friends
before the Kramer's moved down to Atlanta about 10 years ago. It's
unfortunate that they were reunited under these circumstances, but
Darren really enjoyed seeing him.
When I came down yesterday, I brought
some sandwichs from the Taste of Reality Deli in Kinnelon that
Darren requested. He ate a Mike's Delight today, and he finished it
so fast. I'd say that has been his most enjoyed meal so far. After
his afternoon therapy, he was 'interviewed' as part of a research
survey that they are doing on spinal cord patients. After that,
Darren was tired and now he's back in bed resting before dinner.
We received a very interesting package
today- from Gilbert's Chowder House in Portland, Maine. When we take the annual ski
trip up to Sugarloaf Mountain in Maine, we always stop there on the
way, and Darren loves it. But we don't know who arranged for the
package , so will someone from our skiing family please confess??
Darren is looking forward to a more relaxed weekend and enjoying his
time while Greg is here.
He thanks everyone for the cards, emails and packages he has been
receiving and hopes to thank some people individually soon. Love,
Ari
August
21
Note: Ari has asked me to pass along her email address
to the group
distribution list. She can be reached at:
atempleton@optonline.net
Carol Gordon
A brief message fromAri
today:
Through Shepherd, Darren is scheduled to
go to an IMAX movie today-his first time out of the hospital. Should
be exciting...Greg
DeVries (his friend from Kinnelon who is visitng for a few days) and
I will go with him. Even though it might be hard as Darren's first
public outing in a wheelchair, I think he's excited about it, as we
all are.
August 21- second
update
After Darren's shower and short therapy
session this morning, he was scheduled for an outing to the IMAX
theater. Only two other patients went, so Greg and I were able to accompany Darren
on the bus ride to the show.
This was Darren's first experience in public in a
wheelchair. It went
better than I expected it to and everything went pretty smoothly.
The only thing that seemed to bother Darren was when people looked
at him, especially young kids, but other than that I think Darren
really enjoyed leaving the center and getting out. The movie wasn't
the most exciting, but since it was his first outing it was pretty
short and not too complicated.
Several of Darren's friends chipped in to
buy him an ipod, which he has been listening to and enjoying a lot,
so thanks guys! We were
also able to watch the movie that a bunch of his friends from school
made last week, so he enjoyed seeing that. Greg was able to hook up the dvd player
to the big TV which we put at the end of his bed so he can watch it
comfortably in bed tonight.
Darren's roommate, Paul, was able to move
his big toe on his right foot today. It was a very exciting event in
room 217. Paul's accident was on June 26th, so he's been here a
while longer than Darren, but it's a great sign.
The weekends are pretty slow and
uneventful here, so Darren's just taking it easy and enjoying his
company and the nice Atlanta weather.
Love,
Ari
August
22
Sundays are very relaxed days here at
Shepherd. No therapy, and nothing is usually scheduled. We went to
the worship service this afternoon that was run by the chaplain. A
guest speaker, who was currently a day patient at Shepherd (after
you are a patient at Shepherd for about 8-10 weeks you move to the
day program where you live in an apartment with a family member near
the Shepherd building) spoke about his journey and the obstacles he
faced. It was very inspirational. We then enjoyed a nice lunch in
the garden and just spent a while out there.
Once Darren got back into bed this
morning, his feet were pretty swollen. The nurse thinks it's edema,
which is caused by sitting up in the chair for periods of time.
Although Darren's never had this, it is possible for it to occur.
They gave him Tylenol, and elevated his feet on the bed. Hopefully
that'll take care of the
problem.
Tomorrow he has a very busy day-only one
hour off for lunch between 9am - 4pm. He's just watching a movie in bed
now and resting up for his busy dayand week
ahead.
He definitely enjoyed having a pretty
laidback weekend and loved seeing Greg. His first outing yesterday was
successful.
For those of you are new to the list, if
you'd like to contact Darren, you can go
to:
www.Shepherd.org,
click "contact us" then "contact a
patient".
or you can send him mail
to:
Darren
Templeton
Case Manager-Pam
Winter
2020
Peachtree Rd., NW
Atlanta,
GA 30309
This is my last update since Greg and I are going home tomorrow. Mom
will be back on Tuesday. Love, Ari
August 23
This is a poem that John appreciated and asked me to
forward to the group distribution list. It was written by Joe
Hofmann, a business associate of John's from many years ago.
I've lived next door to John and Cindy for about 20
years now, and it's never ceased to amaze me how diligent they are
about keeping in contact with so many people. I think we all know how easy
it is to lose touch, but the Templetons should be an example to us
about the importance and comfort of maintaining ties with our
past.
C.Gordon
Broken Hearts
For Darren Templeton
Life sometimes seems so unfair
So say children
everywhere
No one even seems to care
Shattered dreams and such
despair
Hear their laughter fill the
air
No tears falling anywhere
Oh how quickly life
repairs
Broken hearts caught
unawares
Faith and hope will get you
there
It can’t hurt to say a
prayer
Take the challenge if you
dare
Reach your goals with time to
spare
by Joe Hofmann 8/11/04
August
25
Hi everyone, I know you're anxious to
hear news on Darren, so I'll write up something quick this morning.
I was so happy to be home, but I was also SO happy to get back, too.
Darren was resting when I arrived, but when he opened his eyes and
smiled, that's all I needed! He's been fighting a fever, and now has
a blood infection. I'm not sure what it means, but he's now on a
different antibiotic. I hope to be speaking with the Doctor later
this morning. He's feeling pretty good, though. He went to class and
is off to therapy in just a few minutes. I spoke with his PT for
just a bit, and she said that Darren is working really hard, every
session. He's making improvements, but progress is very slow and
sometimes hard to see and appreciate. She said he's a great patient
to work with! I am doing some housekeeping this morning - so many
packages have arrived that I am sorting through. Thank you to
everyone for sending such wonderful things!!! We are truly
appreciative of everything that's been received. I'll try to do an
update later this evening............
Cindy
August 25—second
update
Hi everyone, I'm glad to be back in
Atlanta with Darren. It was good to
be home with family and friends, but I was anxious to come back,
too. When I saw that thousand watt smile, I knew why I had missed
him. When I arrived, Darren was resting, but there was just enough
time to help him eat a Mike's Delight sandwich from Jim's, then get
ready and go to the movies. We saw Bourne Supremacy with four other
patients and their caregivers. It was my first time out "in public"
with Darren, and it went better than I expected. I think that was
because we were with other people in wheelchairs, and our
accompanying staff knew exactly what to do. But Darren purchased his
own ticket and gave it to the ticket checker ( a man in a
wheelchair, by the way). With some assistance, I could see Darren
going to the movies with his friends (except for the personal care
issues which might have to be addressed). Anyway, it was good for
him to get out, but he was ready to get back to Shepherd, too. He
went right to bed, and I went back to the apartment a little before
11pm. Then I
realized I was hungry - I never ate any dinner! Two pop-tarts and a
cup of tea, some Olympics
and I went to bed. I was exhaust ed,
too.
After some confusion, it was determined
that Darren did NOT have a blood infection after all. Thank
goodness. He still has a urinary tract infection, but that seems
less worrisome. He was feeling good today. Today was a pretty normal
day of therapy and class, then an afternoon ultrasound to make sure
there were no blood clots in his legs - a routine thing to check.
Luckily, there were none. But since he had to be in bed for the
ultrasound, he figured he'd take a little nap! Then he got up for
dinner and now he's watching TV. A little earlier, he made a few
phone calls and sent 2 e-mails to 2 lucky recipients! Hopefully,
he'll feel up to more of that in the coming days. I hope so, as he
likes to feel in contact with everyone, too.
While I was home in NJ, Darren was
scheduled to go to the gym, and got a look at some of the equipment
and exercises he can start to do. I hope that he and I can go
tomorrow or Friday so I can learn how I can help him on the
machines. It just depends on how tired he is after his therapy and
if he has enough energy for more! I took a few pictures that Ari
helped me post on Sony ImageStation. Click on this link to see them
http://www.imagestation.com/album/?id=4229700093&code=11492301&mode=invite&cmp=EMC-AlbumInvite
If you've never been to that site, you'll
have to register, but its quick and easy. I hope you enjoy the
pictures.
Enough for now! With love, prayers and
hope,
Cynthia
August
26
Hi everyone! It seems hard to believe
that I spend more than 12 hours at Shepherd each day, and the time
seems to fly by! When Darren has a full schedule, it seems I do,
too. And today was a whirlwind. Busy morning, very chaotic lunch
hour, busy afternoon, early dinner. I can hardly believe its
8pm already.
Darren started working on "sliding board transfers" today and said
it was really hard and he really wasn't able to do it. Watch for
updates; I hope to be able to report on significant progress in a
week or so. He spent more time in his manual chair today, too. The
hour allotted for lunch was almost completely taken up with Darren
learning to perform his own bladder care. Of course, it takes much
longer to do with him trying to do it himself, then he had about 5
minutes to eat. Not good! But he didn't want to be late for therapy,
so lunch had to wait. During his therapy session, I went to the gym,
and when I came back, he was nowhere to be found. I looked in the
usual spots, but I didn't check one of the outside areas where the
sun was shining - that's where he was! It was birthday celebration
night tonight. One roommate's was yesterday, the other today. Around
5:30 tonight,
lots of the boys gathered in the gym for a pizza party, and it was
fun. Pizza, conversation, photos - a real social gathering! Darren
was able to hold his own pizza slice and eat by himself. Even a kid
who was in a car accident and broke C6/7 was there - walking! His
accident was about 3 years ago. During my treadmill session today, I
decided that I was going to try to find as many success stories as
possible, and make contact with anyone willing to share their story
with Darren. I truly believe that Darren will walk again, but to
keep his spirits up and help him stay positive - I can't do it all
alone. So if ANYONE knows of someone who has been in a similar
situation, or had a similar accident, and you're willing to help me
make contact or give me information, that would be SO helpful.
Today, Darren received a WONDERFUL
present - an autographed authentic 2004 NHL Eastern Conference All
Star Jersey - signed by the whole All Star conference team!!! It is
SO awesome! And the fact that it includes 3 Devils players is even
better! Thank you, Bill - you're the best!!! Thanks to everyone who
sends us packages, and cards and e-mails, too. I am trying to start
e-mailing personal thank you's, but until then, one great big THANK
YOU!!! Well, Darren tells me that his OT is coming at 7:30 am to
help him put on his t-shirt in the morning. As he says - "that
should be interesting." And I agree. I don't think I'll be here to
see it, but I'll get a report....I hope to be able to report on lots
of different kinds of progress in the next few weeks. Keep the
prayers coming....we need them all!!! With love and hope, Cynthia PS
Check the picture site again; Ari is adding more pictures. (Thanks,
Ari!!)
August
27
Hello everyone, sorry for the lateness of
this; thought I would get to it earlier tonight. But I had more
personal care training, and then it took FOREVER to get Darren's TED
stockings on. Ever try to put stockings on someone else? Tight
stockings? On legs that are HEAVY?? Well, this isn't the first time
I tried it, but for some reason they weren't cooperating, and now my
back is hurting and I'm TIRED. But enough about me. Darren asked if
I would include in my update thanks to everyone for all they've been
doing. He viewed the photo album for the first time tonight, and
read the guestbook. He was visibly moved by some of the comments.
And we received more packages today - thanks again! I AM keeping a
list, so I can eventually (soon, I hope) thank everyone personally.
There just never seems to be enough time in the day, and the days
are long. This morning, Darren had his OT session eraly, and it
consisted of dressing himself and brushing his own teeth. But it was
so much more than it sounds. He was successful with getting on his
T-shirt, so that was improvement! He had quite a hard time with his
pants, and needed a lot of help. He tried getting his toothbrush and
toothpaste out of his cabinet (it fell because it was heavier than
he thought), he put the paste on the brush, brushed his teeth and
rinsed out. Pretty much all by himself. Quite impressive. After a
skin class where he saw very graphic examples of not taking care of
his skin, and a PT session, he was wiped out. He hardly ate any
lunch, and slept for several hours this afternoon. The rest of the
roommates were resting, too, so the room was quiet and he got some
good sleep. The he was feeling much better for dinner, but running a
fever again. Just can't seem to pinpoint the cause of the fever.
Anyway, that was our
day.
I did meet a nurse at the gym today who
works here on a different floor, and she had some really good
insights and perspectives. She introduced me to a 32 year old C5/7
who is in a wheelchair but competely independent. His injury was 7
years ago, and his upper body looked SO strong. She works out with
him 3 times a week, and she says he is very committed to staying
strong and in shape. It takes a lot, though. Well, I'll try to keep
everyone updated throughout the weekend. Enjoy, and keep us in your
prayers. With love and hope,
Cynthia
August
29
Hello everyone! Darren is still fighting
a fever - cause unknown - but the nursing staff is all over it.
Doctors will be in on Monday. Frustrating, because its wiping him
out. A half day of activity is about all he can handle. So if the
morning is good, the afternoon is shot. Or vice versa. I hope we can
solve the mystery SOON!!! We were so happy to have visitors
yeaterday - Saturday. Charlene and Michael Butera came down, and we
had a very nice day together. Darren showed Michael what he could do
in the gym, and Michael helped him even more. We were outside in the
garden for a bit, then came inside just before a sun shower came!
Then minutes later, it was hotter than hot again. While Darren
rested, we went across the street to Friday's for drinks (a first
for me!) then ordered take-out to bring back to Darren's room. It
wasn't exactly the same as a restuarant meal, but better than
hospital/cafeteria food! All in all, it was great to have friends
here, both for us and Darren. Well, back to the tougher schedule
tomorrow - hopefully Darren will be up to the tasks at hand. If his
body cooperates, I know his mind will be determined, as always. I'll
let you know............... Love
Cynthia
August
30
Hi everyone, another day of high
temperatures and Darren feeling wiped out. This is getting really
old, and he's so frustrated. Instead of going to his afternoon
physical therapy session, he went for an MRI. And he wasn't too
happy about missing it, but he also wants to find out why he has the
high temps. This morning, he had both a chest X-Ray and an X-ray of
his hips/pelvis. Then the MRI of the hips. Internal medicine and
Infectious Diseases have both been consulted, so they are doing
everything they can think of to try to find the reason behind the
fevers. One thing they're trying is discontinue the Augmentin that
he's on for the urinary tract infection. Maybe he's reacting to it.
The Doctor had a patient about 10 years ago that had an infection in
his hip, and was running fevers. It took them forever to pinpoint
it, and he hasn't forgotten that. So that was the reason for
checking the hips....we'll see what the results are tomorrow, I
guess. I wish I were writing about therapy and progress and good
news, but some days are like this, I guess. Unfortunately, on days
like this, we focus on getting him well, and there's no energy for
rehab. Again, today, he had only half a good day. We pray for whole
days of feeling better, working at rehab and recovery. Please
continue your prayers. Love Cynthia
August
31
Hi everyone, another day of medical mysteries.
Darren felt fine to go to class and a morning session of OT, then he
was told the Doctor wanted to check his legs again for blood clots.
So back into bed for that, then off to adjacent Piedmont
Hospital for a
hip aspiration. The Doctor had seen some fluid in Darren's hips on
the MRI done yesterday, and he wanted it checked for bacteria.
Before he got the results, he explained what would be done if the
fluid was infected, and it would have meant surgery tonight to clean
out the hips and pack them with antibiotic. Awaiting the results
meant no dinner and no outing. But the results were negative - no
bacteria. That IS a good thing, but now we're back to square one
again with the fever, which has been going up and down all day
again. We were able to eat about 7pm, but Darren was not able to go on the
outing to Galyan's - a huge sporting goods store. Too bad, since his
roommates were going, and he was looking forward to it. Oh well, a
nother day, as Darren says. His spirits are pretty good, despite
these setbacks. Yesterday, he did get his neck brace/collar off, so
he was happy about that. He is starting to move his neck more now,
and will do new exercises in therapy now that it's off. During his
OT session, he worked more on dressing himself - putting on a
T-shirt and shorts. He said the shirt is getting easier, but the
shorts are really hard. His arms are not strong enough to lift his
legs, but I'm sure he'll see improvement doing that, too. Today, I
realized that there are challenges and triumphs every day. Right
now, the challenges seem huge and the triumphs small, but they are
there. I just need to look for them, and focus on them. I have
started reading "Love, Medicine and Miracles" by Bernie Siegel, and
it makes a lot of sense to me so far. Thank you to those who
suggested it, and to the one who delivered it! So far, I see Darren
as the "exceptional patient" that Dr. Siegel describes: one who is
involved in his own care, wants to be educated and made "doctors" of
their own cases, and have an "inner locus of control." I've been
telling Darren about the concepts, and I can't wait til he's up to
reading it. I think it will be a tremendous help to us both. Please
check out the pictures, and be sure to add a message to the
guestbook at the end. http://www.imagestation.com/member/join_signin_prompt.html?album_idB29700093&rf=u=Falbum%2F%3Fid%3D4229700093%26mode%3Dinvi
Also, in preparation for some downtime
this long, holiday weekend, I think it might be nice for Darren to
receive some e-mails of his own. Please send to
"puckzman16@yahoo.com." I think he'll enjoy getting some mail. I
don't like to discourage anyone from sending things, but we have
reached a saturation point of food, snacks, cookies, etc. We could
compete with the snack cart that comes around each night! So thanks
for the goodies everyone, but send cards and letters. We still love
getting mail every day. And you can still send e-mails through the
Shepherd site – contact us – contact a patient. They are printed out
and delivered with the mail. With love and prayers, and hope that
these fevers go away, Cynthia
September
1
Hi everyone, another interesting day here
at Shepherd. Despite a fever of 103.8 during the night, it dropped
down by the morning. Darren was exhausted, though, since he didn't
sleep well, so he skipped class in favor of saving his energy for
therapy. He did make both his therapy sessions today - yea!!! But in
between lunch and afternoon PT, nurses and techs whipped into his
room, dismantling it without an explanation of what was going on. It
turns out he has a bowel infection "C-Diff" which can be treated by
a specific antibiotic, and will take at least 7-10 days to clear up.
Some can last a month, but we certainly hope that doesn't happen.
There seems to be some difference of opinion in whether the C-Diff
has been causing the fever. Some say it is, some say it might not
be. One thing that happens with C-Diff is that the patient is put
into a room by himself - isolation - which means that gowns and
gloves must be worn when any contact with the patient is made. I can
sit here
in the room without one, but if I do his
bladder care, or change his clothes, I should wear a gown and
gloves. Also, any nurses, techs or therapists have to wear gowns as
well. Darren can still go to therapy, class, etc., just extra
precautions have to be taken because the infection is very
contagious. On the positive side, Darren is figuring how to do more
and more with his hands, devising ways to get things done even
though his fingers aren't working. And he said he can pretty much
get his own T-shirt on in therapy. So, again, baby steps of
improvement. I was pretty frazzled with the way the room change was
made today, and it sent me into a crying spell. It just seemed that
NOTHING was going his way, and everything has been a struggle. I
made it known to the staff that I was unhappy, and I received 2
apologies from nurses - his own nurse and the charge nurse - that,
yes, the situation had not been handled well. After that, I said OK,
time to move on and get him better. If this is what it takes, let's
get to it. And Darren felt the same. Well, I need to end so I can
try to hitch a ride back to the apt with another family. I move out
tomorrow, into the hotel next door. With love and prayers,
Cynthia
September
2
Hi everyone, hard to believe that our
first 30 days are over, and I had to move out of the apartments they
provide for the families. In one way, it has gone so fast, in
another it has seemed like an eternity. A few items that I don't
want to forget to tell everyone: we have received a lot of stuff
from the Devils, Nets, and Jets. They have been very generous, and I
understand a lot of different people have asked. So thanks for your
efforts everyone, and now that they have responded, there is no need
to keep asking. His room is well decorated, by the way, with all the
cool stuff he has received. A while back, Darren received a
beautiful framed print from Successories entitled "The Power of
Attitude." It arrived anonymously and I thought I knew who sent it,
but it wasn't them! So please let us know who the giver is! OK,
today's news: it feels like we are back in the hospital, taking care
of Darren's sickness(es) rather than in a rehab center. While they
found this infection, the C-Diff, it causes stomach upset and
diarrhea. So even though the fevers are not as high, or at least
they weren't today, now there are other symptoms to treat. A
never-ending saga, it seems. I only hope that he gets all of this
out of the way before we come home, so we don't have these kinds of
problems later. On the positive side, Darren is FEELING his stomach,
so I think that's a good thing. He even said last night he's
starting to feel the needle he gets in the stomach, and that's new.
He also described a really weird sensation in his knee, like a piece
of metal turning around and around in there. Strange, but maybe
good??? We certainly hope so....... Its quiet now, being in a room
by ourselves, but maybe it will help Darren sleep a little better.
It does get boring, though. Keep the e-mails, cards and letters
coming! They always brighten our days and make us smile, reminded by
our friends' prayers, support and love.
With love and hope,
Cynthia
September
3
Another day, another question mark about
why Darren feels like he does. His temp went up to 103 last night,
but this morning he was back to feeling OK. What a roller coaster.
As the day wore on, he was complaining about a sore throat, and they
tested him for strep. They put him right on penicillin, just in case
it is. So another antibiotic, and I wonder how that will affect the
C-diff and the flagill they're using to treat that. Right now, we'll
wait on the strep and see what happens. In the meantime, his OT
session was feeding himself breakfast and dressing himself. Up until
now, he has been getting fed breakfast since he's still in bed and
its much harder to eat on his own. Not anymore! At least according
to Amy, his OT. Then he dressed himself, and he did better than last
time. Still hard with the pants, but better, and better with the
T-shirt as well. After that, he was exhausted and slept another hour
and a half! Since he had to stay in his room til 2pm today (a 24 hour restriction
because of the infection), he figured he may as well rest! Then when
he got up, he brushed his own teeth, and did that better than
before, also. He gets frustrated, but he is making improvements.
After his afternoon PT session, he was tired, but since it was nice,
we went outside to read his mail and take in some sun. Since he
wasn't running a fever, he could afford to get a little warmer, and
it felt good to both of us. A new roommate moved in today. He's been
in ICU for 4 or 5 days, and has the same infection that Darren has.
He is 16, from Alabama, and was in a car accident
about 4 weeks ago. He was in an a hospital in CA, and I know he had
a halo, his break is C6/7. He is already moving at least one leg,
and seems like a really nice boy. I'm sure we'll get to know him
better in the next few days. Well, we are looking forward to having
some local visitors this weekend to break the monotony of long days.
Not that Darren doesn't need the rest, but a little company will be
nice. I hope you all enjoy the long holiday weekend, and keep us in
your prayers. Love Cynthia
September
4
Hi everyone, it was a nice day here in
Atlanta, so Darren was able to get
outside and enjoy some fresh air and sun. Unfortunately, his fever
went up after that, and he got back in bed for a bit this afternoon
to take a rest. Sometimes when his fever is high, he still feels OK,
so he does as much as he is able. He was up again for dinner, but is
just eating bland foods because his stomach is still uneasy. But his
strep test came back negative, so that's good because I didn't like
the fact he'd be on two different antibiotics. Besides, there's a good chance I
would've come down with it, too! John and Ari arrvived late last
night, and Darren was happy to see them, especially Ari. When we
were outside, they went off on their own and were chatting up a
storm together. It seems like they are so much more than brother and
sister now. Being next door in the hotel is very nice. Costly, but
so close and easy to go back and forth, and a nice large comfortable
area. I'm happy about that. A last minute planned visit today from
Mary Fasciano. Many of you know Mary as Darren's and Ari's
babysitter for many, many years. She became part of our family, and
is a very special person. As I write this, Darren is showing Mary
around, just to get out of the room a little and show her the pool,
the therapy room, etc. Its good for both of them. I hope you all
have a safe and happy holiday weekend. Please keep in touch and
continue your prayers. Love
Cynthia
September
5
Today was not as quiet as Sundays past.
Relaxing but more activity than usual. In a good way! Darren had an
early shower, then rested more after that. He got out of bed before
lunch, ate lunch and went outside for some fresh air. It was really
a beautiful day, and there were lots of people out. Mary's visit
continued, and she joined us at the Worship Service. The service
included a moving sermon (at least for me) about not looking
elsewhere for God, but looking within yourself. Not asking God to
help you, but accepting his help. There was a wonderful choir, who
ended the service with a Circle of Love (everyone holding hands)
singing Amazing Grace. Needless to say, a few tears were shed during
that (during the whole service, for me...). In one way I felt
uplifted, in another way I was drained. In fact, afterward, since
Darren was in his chair, I laid on his bed and slept a little! Later
in the afternoon, Julie, Mark and Alex Kramer came for a visit. They
brought food for Darren - hamburger, fries and a shake - visited for
awhile then took John and me out to dinner. We had a really nice
time, and I knew Darren was being kept company by Alex, who brought
a DVD to make him laugh. Meanwhile, Ari and Mary went out for dinner
themselves. People keep asking what they can do for us, and I know
everyone wants to do something. Mary and the Kramers did what so
many others are unable to do - they gave us their time. Don't get me
wrong, I know some of you would be here in a heartbeat, and we
appreciate your offers to come. It just worked out perfectly for
Mary to come this weekend, and the Kramers live nearby enough for a
visit. Their hugs, comforting words and loving support will be
enough to get me through a few more days. I keep their hugs in my
memory bank, and draw on them when I need them. Maybe sounds
strange, but it works for me! Well, Shepherd has some activities
planned for Labor Day tomorrow, and I don't know what they are
exactly, so I'll report on them tomorrow night. I'll end by saying
that even though Darren's temperatures were rising and falling again
today, he was really feeling OK, and managed to keep down not only
the burger and fries, but a few bites of a delicious chocolate cake,
too. With love, prayers and thanks to our angels of the weekend,
Cynthia
September
6
With Hurricane Frances quickly approaching the
Atlanta area, the winds have been
heavy and rain is coming. The lousy weather has a way of making
everyone else feel lousy. Darren has managed to get his fever down,
but still gets exhausted very easily, especially after therapy. My
mom is also feeling under the weather and opted to go back to the
hotel this afternoon and just rest for the remainder of the day.
Assuming our flight doesn't get cancelled or delayed, my dad and I
will be flying back home tomorrow, so my mom wants to make sure
she's feeling better for the week ahead.
The doctors are still trying to pinpoint
the cause of these fevers, and are now running all sorts of tests on
different things. Hopefully by the end of this week they will know
for sure what it is, and be able to give him the right treatment so
he can get back to his normal, determined self.
On a brighter note, we had a visit from
Barbara Glauss today, a friend who used to live in northern
New Jersey, and now lives in
Atlanta. It was nice to have her
around for a few hours this afternoon. And the big news of the day,
Darren is able to wiggle the pointer and middle fingers on his left
hand. He claims that he's had the pointer for about 2 days, and just
got the middle finger today. He just chose not to share that with
anyone. The wiggle is ever so slight, but it is definitely there. He
has also began to get spasms that make his legs and feet move. They
are neither good nor bad. Some say it's good, some say it doesn't
make a difference. But we are going to say that it's a good thing,
since it can't hurt.
New pictures will be added to the website
within the next day or two, when I get home. For those of you that
are new to the list and aren't aware of the site, I'll make sure the
invitation to the site gets forwarded to all of you tonight as well.
Be sure to add comments to the guestbook at the end of the album, we
read them to Darren.
Continue the
prayers.
Much love,
Ari
September
7
Hi everyone, this is my second attempt,
as I did something wrong, and Poof, my entire e-mail was gone. Hope
I can re-create it.... I am feeling better after my day of R&R
yesterday. Back today in true form and taking care of Darren. Last
night, his fever did not spike, so that's 3 nights in a row! Yea!
He's still running a low grade fever during the day, though.
Infectious Diseases is still running various tests, as Darren says a
"laundry list" of possibilities. They certainly seem to be thorough.
He still is tired, but made it through his class and therapy
sessions. Right now, he's taking a "power nap" so he can watch the
tennis on TV. I hope he can stay awake for that, then get a good
night's sleep. We were all so excited about the movement of the 2
fingers, and yet he chose to keep that to himself! I know you all
are excited, too. Keep praying, and I just KNOW more recovery is to
come. Not much else to report, except that Frances brought lots of
wind and rain to the area today. Traffic lights weren't working, and
schools were closed, so that affected the staffing to some degree.
The garden here is strewn with branches, leaves and plants that were
blown about. Its still raining now, but it is expected to stop late
tonight. I look forward to some sunshine tomorrow, and a brighter
day. Keep praying for Darren and all of us. Love
Cynthia
September
8
I used to believe the saying "when Mama's
happy, everyone's happy." Now its when Darren is happy, everyone is
happy. Or shall I say feeling better. He's not feeling great, but
better, and I'll take that today and yesterday. I feel better, too.
He's eating more, is not as tired, and is in a better mood.
Progress!
Today, he was working more on
"transfers," moving himself from one surface to another, i.e. from
his manual wheelchair to the PT mat. Eventually that will mean
moving from his chair to his bed, instead of being lifted, his chair
to a car, to a kitchen chair, etc. Once he is able to accomplish
that, he will have so much more independence. Its a slow process,
but he says its getting easier. One day, I'll sneak into therapy and
watch him. Then I'll have more to
report!
Darren said that he can't wait til he's
home and the 4 of us all have dinner together in the kitchen, eating
a meal that I've made. Imagine that - wanting one of my dinners! But
seriously, it just points out what he's missing - home, the 4 of us
together, "normal things." It pains me because it will be a "new
normal," yet I can't wait to get him home, too. Such conflicting
feelings.
Please check the picture site again, as new
pictures have been added. And please sign the guestbook. Its great
to read all the new posts. Here's the link again: http://www.imagestation.com/album/?id=4229700093&mode=invi&idx=0
I don't usually report on gifts received
in my updates, but I can't help myself on this one. Ian Hamilton
arranged a signed, oversized tennis ball from Andy Roddick - how
cool is that??!! Thank you! Add that to the Devils, Nets and Jets
memorabilia and we are accumulating quite an impressive collection!
Thank you to all those who had anything to do with receiving these
wonderful gifts - you know who you are!!! We still look forward to
getting mail every day. Please keep the cards, letters and e-mails
through the Shepherd website coming. Anything to brighten his day is
very welcomed!!!
With love and prayers,
Cynthia
September
9
Hi everyone, I'm writing early tonight so
that maybe Darren can get all settled and we can watch The
Apprentice without interruption. We'll see... Today started out
really well. The sun was shining, it was a beautiful day and I was
in a good mood. So was Darren. He was awake, washed and dressed,
ready to get up.
First scheduled was an Assistive
Technology class, and the instructor came here to help Darren learn
to use "Dragon" - a voice recognition software program. He needs
more practice, but it will be really helpful. Next was PT, but
thanks to the laxative he was given last night, he didn't last long
and he was back in the room, where he's been ever since. With the
C-diff infection, an involuntary BM means a 24 hour confinement to
his room. He can either be in bed or his chair, but he has to stay
in his room. Real bummer. But his therapists can come in to do range
of motion exercises and other training, so he did get some therapy.
Not quite the same as going to the gym for 2 sessions, though. The
Chaplain stopped by for a quick visit, and his message was uplifting
and inspiring, suggesting that Darren focus on the "trilogy of
being": mind, body and spirit. He had other good things to say as
well. He is always encouraging and relays meaningful messages.
Despite this setback, Darren's outlook was quite positive. He is
feeling so much better, and he knows this was a result of the
laxative, and not the infection. He is anxious to finish this round
of the antibiotic and get tested again to see if he is clear. We
certainly hope so! In the meantime, he impressed me by eating potato
chips out of the bag, only dropping a few. Even some he dropped he
was able to retrieve. And for dinner he ate a meatball sub, mostly
by himself. He dripped some sauce, but hey, who doesn't?? He really
is trying to do as much as possible by himself. Well, sorry about
the personal stuff, but if you're gonna hear the good, you gotta
hear the bad, too, sometimes. I try to be as sensitive as possible
in describing these kinds of events. Its not pleasant, but it is
part of our day. Hope I didn't make anyone uncomfortable. Well,
here's to better days and a good weekend. Darren's looking forward
to a visit from Arek and Eli. Should be fun! Love and prayers,
Cynthia
P.S. Darren read the posts on the picture
site tonight, and was quite surprised (pleasantly!) at the number of
new messages. So keep them coming -
thanks!!!
September
10
Hi everyone, another hot sunny day in
Atlanta today, and Darren got
outside to enjoy the sunshine this afternoon. That always makes him
happy. This morning, he had morning OT again, so he started early.
He washed himself as much as possible in the shower, dressed himself
as much as possible and then fed himself breakfast. Then he went
right to class, then to PT after that. He came back in his manual
chair, after transferring himself (with help) into it, ate lunch in
that chair, then participated in a research study survey, which is
when he was outside. Do I have to tell you how tired he was after
that?? He was then ready for a nap, since he was going to the mall
tonight. Again, he looked better, ate better, and felt better the
whole day. The Infectious Disease Doctor is still looking for
something going on in his body that might be "hiding," and he is
determined to find the cause. He is almost finished this round of
the flagyl (antibiotic for the C-diff infection), and I am so glad
he is feeling better. But it would be good to know what is going on
in there! In the meantime, they keep taking blood, running tests,
etc. So tonight we went to the mall. It was just Darren and me,
another patient Michael and his girlfriend, a recreational therapist
and the driver. It was a worthwhile trip for a lot of reasons.
First, it got us out of here. Second, it was fun! We ate Chinese
food, shopped, walked around and talked. Third, its good to get
Darren into situations where he needs to fend for himself to an
extent and figure out how to do things, like handle money, get in
and out of doors, manuever around obstacles and through narrow
aisles, etc. We enjoyed ourselves. Now we wait for Arek and Eli, and
I think I'm looking forward to their visit just as much as Darren!
The weather is supposed to be nice, and I think we'll have a
barbeque for Saturday dinner. We've seen other families and groups
do that, and it looks like fun.
I hope you all have a good weekend, and
if I don't send an update, you'll know we've been busy!!! With love,
prayers and positive thoughts,
Cynthia
Just
a note:
For
those of you who don't know, when Cindy refers to Arek and Eli
below, that's the Honeysuckle Lane contingent.
