Praise the Lord!!! At least she will have 3 functional fingers!!!!!!
Happy New Year!!!!!!
We love you guys. She can do what she needs to do with her fingers!!!!!
Chelsea still doesn't understand,she thinks it's unfair that Courtney
doesn't have 5 fingers. She doesn't understand the importance,
and
happiness of 1 finger!!
PLEASE REMEMBER US ON THE 6TH OF JANUARY!! Courtney will have
her
middle and ring finger released, the bones are fused on the left hand.
They will also place tubes in her ears, due to the fluid caused by
the
cleft palate. It may take a couple of days to let everyone know
her
surgery went.
MAY OUR PRAYERS, THOUGHTS, HUGS, AND KISSES BE WITH YOUR FAMILY!!!!!!
AND ALSO TO CHRISTINE AND ZOEY!!!
I hope recovery goes well for all!!!!
May God Bless Don, Cathie, and Teeter for this world of information,
and
friendship!
We are very new to Apert, and this web site!! About two weeks now!!
For
Apert, almost 7 months!
Love,
The Holt Family
Mechelle Holt address:tholt@webtv.net
=========================================================================
Date: Fri, 1 Jan 1999
18:24:31 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: note
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Hi Carlee is home but mom said she's not up to par yet keep the prayers
going
. thanks Marilyn
=========================================================================
Date: Fri, 1 Jan 1999
21:24:04 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: chop stick lesson
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My wife and I took Lindsay to dinner this evening...and Chris and I
usually use chop sticks when we eat chinese food. Well Lindsay asked
what they were and whether she could try. I told her that she
probably
wouldn't be able to use them until she was older (mistake). "Can I
try"
she asked....well of course I realized I made a bad assumption and
said
of course. Not have the same use of her fingers as myself of course
I
incorrectly assumed this task would be much too difficult for a six
year
old with smaller fingers...some of which don't bend at the joints.
Before we knew it she was using chopstiks...not perhaps in the usual
manner they are normally used...but she adapted and was able to use
them.
Well...so much for determining what the limitations are on my daughter!
Another lesson learned!
=========================================================================
Date: Fri, 1 Jan 1999
23:24:24 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Midface questions
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This board is so wonderful. I came on tonight because I've
been thinking
about Carlee and wondered how she was doing. It was so nice to
hear she did
great at surgery from her grandmother. I'm learning these kids
are tough.
(as well as their parents).
I've been avoiding asking a question that I really should know about.
Since
the first week after my daughter was born and we saw specialist and
received
material on Aperts I blocked out anything that had to do with the midface.
It
didn't penetrate until the fourth week. When it did it really
through me for
a loop.
I'm now ready or need to be for the reality of the midface. Does
this start
to happen right away? Are some cases more mild than others. Does
it sometimes
not happen at all (I can see it starting on Samantha). Can they treat
it right
away or only when she is older. And I guess the main question
how bad does
it get. While I didn't understand what this meant the first month,
I'm
finding out that everyone I know doesn't either. They aren't
hearing it. No
matter how many times I say it. I think because when we are pregnant
we hear
about webbed toes and fingers mishaped heads and cleft palates.
But you never
hear about midface not growing, so it's like it doesn't exist.
HAPPY NEW YEAR!
Lisa Guyette
Samantha 7 weeks old mother
=========================================================================
Date: Sat, 2 Jan 1999
10:09:16 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: misc.
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Just a note to say Happy New Year and glad all the kiddos are doing good.
It is SNOWING and BLOWING here. I have at least two feet
of snow plus in
the drifted areas of my yard.
I went out to shovel earlier this morning and just wound up making
a path
for the dog to go to the bathroom. The way the wind is blowing
I would
just be wasting my time trying to clean it up right now. This
is suppose
to go on all day. We are acclumulating an inch an hour!
It is a good
thing we still have power.
My husband made it home from India for Christmas but had to leave again
yesterday. He got out just in the nick of time. (Too bad his
flight wasn"t
scheduled for today instead)
I have only seen one car on the road today along with some snowmobiles.
I am going to try to get everything done around here in a few minutes
that
requires water, just in case it gets so bad that we lose power.
Thank God,
we just got a load of firewood for the fireplace.(Just in case)
Nick had big plans of playing in the snow today, but I think his dreams
of
that is now going away since the snow is much deeper than his boots!
This is a good day for mw to "dream too" I think I am going to
dream of
those vacation plans to Myrtle Beach in June.
Reservations have been made for us and the Sears. I know that
this
vacation is months away, but I am encouraging each and everyone of
you that
can possibly go to do so. Not only is this a fabulous get-away
but to
actually meet the famililes that you are so familiar with on the listserve
is a great bonus. The other nice thing about where we are staying
is you
can have your own privacy to come and go as you please or else just
go to
the pool or beach and find the company that you want or need.
This is also
a bonus for the kids to meet other kids with the same medical problems
and
not feel so isolated. This goes for the adults too.
I have been a member of this listserv now for one year and through this
I
have made some precious friends. I feel that in some way that although
we
don't speak every day that ther is a very special bond with us all.
I have vacationed with the Sears last summer in Myrtle Beach.
Last August, The Baileys, Jefferson's, Tingleys and us vacationed
at Lake
Shelbyville.
The Bailey's and the Jefferson's have been to my home and Nick has
been to
Jacob Bailey's bithday party.
Beth Oppelt has also been to my home. As a matter of fact, Nick
is the
first apert person that Beth had ever seen other that herself.
I guess my point here is, the listserv is a 'Godsend" but please come
and
meet us face to face and put a face with the names that you are so
familiar
with.
I will be in Myrtle Beach from June 9-18. I think the Sears are
coming in
on Saturday for roughly five days. I spent six days there last
summer and
decided to extend my stay this year. If you can only come for
a few days,
that's ok too.
You can get rooms with kitchens in them to help with the cost of not
always
eating out.
Every room has an ocean view.
If you can, jump on the bandwagon now and get those reservations made.
You
will be glad you did. Not only that, you can sit there like me
and 'dream"
on the nice hot weather. the ocean view. The pools, great places
to eat.
Water parks, Grand Prix racetrack. Shopping. Fireworks .
It is just at
your fingertips. And the Great company.
Just a reminder, we are staying the the Crownreef.
Hoping to hear from you all soon.
Judy and Nick Amerman in cold, snowy, snowed-in and not going anywhere
Morris, Ill.
P.S.
My husband will be coming in from his India job for this vacation too.
(He
will be on a golf course every Morning)
=========================================================================
Date: Sat, 2 Jan 1999
14:17:06 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey's update
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Zoey's Mom, Christina here~
Just checking my mail. I'm glad that Carlee did well with her
surgery. Zoey
has 3 fingers and a thumb on both hands and so far has been able to
use them
well.
Prayers will go out for Courtney for her surgery on the 6th.
Zoey is still creeping along, doing better, not making any big leaps
and
bounds, but that's OK. They're talking about taking her off her
paralyzing
drug today, which means they think she'll be able to start breathing
on her
own soon. I'm so relieved.
For anyone else I've missed that's sick or having/had surgery.
Good luck and
God bless.
Christina
one day warm/next day cold San Antonio
=========================================================================
Date: Sat, 2 Jan 1999
14:29:48 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Zoey's update
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Christina, hi and thanks for letting us know how Zoey is doing.
We'll keep
everything crossed that she will breathe on her own and can get weaned
off
the paralyzing drugs. That virus is so nasty. What a time
you have had and
are going through. Hope you have some support there with
you. This must
be a lonely time.
Take good care
Pat (EvaJessie's mom)
=========================================================================
Date: Sat, 2 Jan 1999
16:29:26 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: apert's
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Hello Christine Bucci!
My name is Liz Saylan we
have spoken on the phone a long time ago and I never
got a chance to write to you,I am glad we can now keep in contact and
get to
know each other through this list serv. I am 30 years old and work
for a local
grocery store and I have apert's syndrome too!
So l hope we get to keep
in touch through email. You can email me through the
list serv or at LSAYLAN@AOL.COM ok? Also I have some pictures in the
clubhouse
feel free to take a look there will be more coming soon!
Liz Saylan
=========================================================================
Date: Sat, 2 Jan 1999
21:37:16 -0800
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: WOW!!!
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I can't believe it, but I just took a quick look at how far behind I
was in
email reading, and it is November 1st!!!
I still don't have enough time right now, but I wanted to say, "HAPPY
NEW
YEAR" to everyone.
I also want to thank the Baileys for remembering us on their Christmas
card
list. The pictures were beautiful, and will be added to Julia's
pictures.
We have had a very exciting time in the family since we last wrote,
but I
promised my children that we would have no more foster children (other
than
the 2 permanent placements we have now) until after January.
We have had an amazingly busy year with one time seeing us with 7 children
at once! It has been stressful on everyone. The last 2
kids moved out Dec.
10th, and since then we have been enjoying the holidays. Now
it is "catch
up" time for many different things that have had to wait this year.
I'm hoping to catch up on my reading soon. I still hope all is
well with
everyone.
Julia is due for some major surgery soon. We are hoping real
soon so that
we can do as much as we can before summer.
Julia is beautiful at 2 1/2 years old now, and we wouldn't change one
day
with her. We feel blessed to have her and the list server.
Sorry for not being around for a while!
All the best
Rene
=========================================================================
Date: Sat, 2 Jan 1999
21:51:09 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Midface surgery
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I'm now ready or need to be for the reality of the midface. Does
this
start
to happen right away? Are some cases more mild than others. Does
it
sometimes
not happen at all (I can see it starting on Samantha). Can they treat
it
right
away or only when she is older. And I guess the main question
how bad
does
it get.
Hi Lisa,
I hope all is going well with your family and Samantha. Allies
mom
here, Allie is 9 years old and had 25+ surgeries, with the midface
being one of them. Usually one of the first things to consider
is not
the midface but release of the fused sutures in her cranium.
This is
very important to allow the brain room to grow. Most doctors
dont do
the midface usually until 7-8 years old depending on the circumstances
of the child, (eg. breathing problems, eye proptosis, eating,
speech
problems, self esteem of the child) Every case is unique and
they are
continually improving techniques and procedures. When Allie was
in the
hospital there were two other babies who had some type of pins put
in
that had to be turned and this was suppose to be in lieu of a midface.
I'm not too familiar with that because Allie didnt have that. Allies
situation was too severe for that. She had a cloverleaf shape
head I
will try to send some pictures one of these days. If things are
not
that bad it is wise to wait until teenager. Because if you have it
done
at 7-8 it will most likely have to be redone as they complete their
growing when they are teenagers. There is also a surgery called
a
monobloc, but it is very risky and few doctors do it because of the
high
rate of infection. Lisa if you have not already been hooked up
with a
craniofacial team, it would be very wise for you if it is at all
possible. They are usually very informative and each specialist,
contributes their pertinant knowledge and at the end they sum it up
and
make suggestions as to the timing of surgeries. I know it is
VERY
overwhelming in the beginning but just enjoy each day and dont get
too
caught up with the future, it can make you crazy with worry.
Easy to
say but hard to do. Will be thinking of you. Let us know
how Samantha
is doing...
Best Wishes
Claudia Salazar
Allies mom
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Date: Sat, 2 Jan 1999
21:58:02 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re Zoey and Carlee
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Glad to hear the two are progressing, you are still in our prayers!
Hope the hospital stay is soon to be over. Keep us posted...
Warmest Regards
Claudia Salazar
=========================================================================
Date: Sat, 2 Jan 1999
22:59:18 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re Chopstick Story
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This was such a cute story, I enjoyed reading it and reminded me of
a
story about Allie. Thought I would share it too.
When she was about three years old, we had just taken our bath and had
finished changing her trach and ties which was the usual routine.
Allie
had decided to give her baby doll a bath too. I went in the other
room
to make dinner... A few minutes later Allie came in the kitchen and
she
was drying her baby doll. With a perplexed look on her face, she
questioned, "Mama I cant get her trach in her neck." So for Allie having
a trach is so normal, even back then. I guess she thought everyone
should have one. That evening Allies daddy drilled a hole in
the dolls
neck so Allie could change her trach and ties too. To this day
Allie
still has her baby doll that looks like her. She has taken it
to school
and shared. One of those special times I will never forget.
Claudia Salazar
=========================================================================
Date: Sun, 3 Jan 1999
11:45:41 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Merry Christmas
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Hello Laurie:
Thanks for the Christmas card. It's always nice to put a face with the
name.
Happy New Year.
The Bradley's
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Date: Sun, 3 Jan 1999
13:28:12 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: WOW!!!
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Hi Rene, thanks for the update. Boy you are a busy family!
Let me know
how Julia's surgery schedule shapes up. You know she is in great
hands out
there. I dug up some research on EvaJessie's surgeries
and the procedure
that our surgeon used in 1993 was reported three years *later* in the
journals -- pioneered by someone else. So you know they are on
top of
things. Well, thanks for stopping in and keep in touch when you
can.
Pat and EvaJessie (on the prairies)
>
=========================================================================
Date: Sun, 3 Jan 1999
17:50:45 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey's update
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Hello everyone...Zoey's Mom here~
Not too much to report, but wanted to respond to the comment about having
help. My Mother may never know just how important and special
she is to me.
I don't know what I'd do without her. She is Zoey's second Mom
as well as her
Grandma. She relieves me each evening so that I can go home and
spend some
time with my 5 year old, Tia and take a shower and whatever else I
need to do.
This whole thing with Zoey has been especially hard on her, because
she lost a
baby (would've been my older sister) at six months old, of some sort
of
pnemonia. Interestingly enough, my sister would've been "severely
retarded",
or so the doctors told my mother, because they realized (after her
death) that
her head was alot smaller than it should've been.
ANYWAY, I just wanted to let everyone know what a wonderful mother I
have. My
two daughters and I are very blessed. Let me not forget my Dad,
too. In
fact, Zoey prefers my Dad to either my Mom or me, it's rather cute.
My Dad
will try to hand her back to me and she'll cry. I don't let it
get to me, my
Dad was my favorite too when I was young.
Zoey is now off her paralizing drug and she's beginning to move around.
I
don't like it much because I can't hold her due to the fact that she
still has
her three chest tubes in. She's in and out of conscientious (sp?)
and I can
tell at times is uncomfortable. However, we're moving in the
right direction
and I shall not complain. (smile)
The prayers are working...
Thanks,
Christina...in S.A. it's a cold one today
=========================================================================
Date: Sun, 3 Jan 1999
17:53:11 EST
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From: Yonstein@AOL.COM
Subject: Re: Zoey's update
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Dear Christina:
Boy am I glad to hear Zoey is doing better and off the paralyzing drugs.
I
bet you can't wait to hold her. I will continue to pray she improves.
You are very lucky indeed to have a mom like you do. I, too, am
blessed with
mine.
Best wishes,
Janine Krebs
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Date: Sun, 3 Jan 1999
18:29:51 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Hand Surgeries
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I was playing "Elmo's Preschool" with
my 3 year old on our
computer when Elmo surprised me by saying "I have 4 fingers on each
hand." It's true, he does. I guess I've heard this before,
but
didn't notice it until the discussion here about hand surgeries.
Just thought those of you with kids who like Elmo might be
interested.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Sun, 3 Jan 1999
15:02:31 -1000
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From: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: chop stick lesson
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Our story about chopsticks:
Growing up in an Asian home I felt quite at home with chopsticks all
of
my life! I remember having a hard time adjusting to American
food and
knife in fork when I went away to college ( probably a manifestation
of
homesickness I am sure!). I don't recall when it was in
life that I
finally was able to master chopsticks but it must have been sometime
in
high school. Up until then, I crossed them, and used
them in my own
way. The best way of course would make my mother just cringe
---which
was to take a chopstick in each hand, and twirl noodles (spaghetti
was
of course the best because it was saucy and messy!) into a ball,
and
then bring the two sticks together ---try it next time you have
chopsticks at an Italian restaurant!!!
So, for our story! John Henry, our older child, has
tried chopsticks
since he was about 4 or 5 and he is still a little frustrated by them.
Margaret, however, with her little fingers has managed
to get food
into her mouth without as much fuss and frustration. Okay,
so her
technique is unconventional, but so what?? She really enjoys
it when we
go out for Japanese food!
I really recall that little hesitation in my heart, thinking that
she
would not be able to succeed. She continues to amaze us,
and every
day, I see her patiently working on some task. Just
amazing!
Aloha & Happy New Year!
Joana & Mar
Honolulu
Robin MacDonald wrote:
>
> My wife and I took Lindsay to dinner this evening...and Chris and
I
> usually use chop sticks when we eat chinese food. Well Lindsay asked
> what they were and whether she could try. I told her that she
probably
> wouldn't be able to use them until she was older (mistake). "Can
I try"
> she asked....well of course I realized I made a bad assumption and
said
> of course. Not have the same use of her fingers as myself of course
I
> incorrectly assumed this task would be much too difficult for a six
year
> old with smaller fingers...some of which don't bend at the joints.
>
> Before we knew it she was using chopstiks...not perhaps in the usual
> manner they are normally used...but she adapted and was able to use
> them.
>
> Well...so much for determining what the limitations are on my daughter!
>
> Another lesson learned!
=========================================================================
Date: Mon, 4 Jan 1999
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Hand Surgeries
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It seems as though ALOT of cartoon and children dolls/characters have
four
fingers. The Flinstones are some others we have noticed.
It is strange we
never seemed to notice before our little one came along.
Robin Hill
----------
> From: jgibson2@EROLS.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Hand Surgeries
> Date: Sunday, January 03, 1999 1:29 PM
>
> I was playing "Elmo's Preschool"
with my 3 year old on our
> computer when Elmo surprised me by saying "I have 4 fingers on each
> hand." It's true, he does. I guess I've heard this before,
but
> didn't notice it until the discussion here about hand surgeries.
> Just thought those of you with kids who like Elmo might be
> interested.
>
> Judy
> Judy Gibson
>
> jgibson2@erols.com
=========================================================================
Date: Wed, 6 Jan 1999
17:59:08 +1100
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carjas <carolh@HOTKEY.NET.AU>
Subject: The Precious Present
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Hi, Could you enlighten me on this book "The Precious Present" please
=
who writes it and what is it about, I'd love to get hold of a copy.
Carol
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<DIV><FONT color=3D#000000 size=3D2>Hi, Could you enlighten me
on this =
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"The Precious Present" please who writes it and what
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about, I'd=20
love to get hold of a copy.</FONT></DIV>
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<DIV><FONT color=3D#000000 size=3D2>Carol</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Wed, 6 Jan 1999
14:15:00 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: TEST
MIME-Version: 1.0
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THIS IS ONLY A TEST.
=========================================================================
Date: Wed, 6 Jan 1999
16:54:36 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: The Precious Present
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Hi Carol
The little book is written by Spencer Johnson MD, he is also the author
of "The One Minute Manager"... It is about a little boy who meets an
elderly man who is very much at peace with himself and talks about
"the
precious present" to the little boy. The boy spends his life
looking
for this "present" and at the end finds it..then he meets a little
girl
and tells her about the present and the cycle continues. I dont
want to
give it all away. It takes perhaps 15-20 minutes to read.
I guess it
has more meaning to me because it was a gift given to my mom by a
coworker when she became terminally ill. She really enjoyed it,
thus
when my mom passed away a week before Allies birth, it gave me great
comfort to read those words when I knew they were my moms philosophy
of
life. I hope it has as meaning for you as it has for me.
Claudia
> Carjas wrote:
>
> Hi, Could you enlighten me on this book "The Precious Present" please
> who writes it and what is it about, I'd love to get hold of a copy.
>
> Carol
=========================================================================
Date: Thu, 7 Jan 1999
20:15:59 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Apert Mail <apertmail@USWEST.NET>
Subject: Hello again
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Hello to all and a very Happy New Year.
We went through a change of ISP, as well a new house, and a new
school.... etc.
We are Dawn and John Jennerjohn, and our daughter Courtney has Apert.
She has been through all of the standard early procedures, but that
almost seems like ancient history. She is 5 now, going on 13, and has
taken Kindergarten by storm. She entertains all of us with the miniature
acoustic guitar that Santa brought, and has become quite the vocal
one.
Having two older and wilder brothers has been a definite advantage.
We are looking forward to getting back into the swing of things here...
We've been off the List for about 4-5 months.
Hope everyone is doing well, and best wishes for the coming year.
John, Dawn, Courtney, Cameron and Christopher Jennerjohn.