In a message dated 98-09-05 22:06:25 EDT, you write:
<< jamerman >>
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Date: Tue, 8 Sep 1998
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From: TFinch10@AOL.COM
Subject: Re: starting school
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Dear Friends,
I thought some of you on the Listserv with school age children (and
future
school age children) might find this useful. This is a rough copy of
a letter
that we send to Nate's classmate's families each year at the beginning
of
school--and one that people invariably thank us for sending...
"For those of you who have received this letter before, we ask you to
bear
with us as we introduce our son Nate Finch to those who have never
met him or
may have forgotten. Here is how Nate, a 2nd grader in Mrs. Diamant's
class,
describes himself--"I have a brother who is 11 years old named Jeremy.
At our
house, we have fish, turtles, bees and a crayfish. I play the piano,
like to
swim and play hockey. I was born with Apert syndrome. My fingers were
stuck
together but they are not now. It's not a big deal and I don't like
it when
people make it a big deal. You can ask me one or two questions but
not all the
time. It's more fun to play.
Most kids do not make comments directly to Nate but some ask questions,
some
will mention him to you ("There's this kid at school who looks funny.
His
fingers don't bend. Why can't he close his mouth? What's wrong with
him?) and
on the rare occasion, typically in an unsupervised setting, a child
will say
or do something mean. Whatever information you share with your child
will not
be as important as the way that you share it. A warm, accepting, matter-of-
fact tone does the job, helping kids to understand that different does
not
automatically equal Bad, that it's OK to be curious but not mean.
In that spirit...Nate looks a little different because he was born with
a rare
craniofacial condition which affects the bone in his skull, face, hands
and
feet. His head is tall and asymmetrical while his nose and cheeks are
recessed, giving his face a flatter appearance. His mouth is open because
he
can't breathe through his nose. His speech may be difficult to understand
at
first. At birth his fingers and toes were webbed. Nate has had 10 operations
(we're losing count) to separate his fingers and reshape his skull.
As he
grows, he'll have more.
We often answer: "That's just how Nate was born". For the rare instance
when a
child teases or persists in a mean way, it is important to say "Stop".
The enclosed news article is helpful (we enclose an article about how
children
learn sensitivity to other children who have some obvious difference).
Please
feel free to call us with any questions or comments..(we include our
phone
number) Thanks!
From Jeanne in Boston
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Date: Tue, 8 Sep 1998
08:26:45 EDT
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From: Firefli007@AOL.COM
Subject: Re: starting school
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Dear Jean in Boston,
Thanks for the great article re Nate. It helps us "Big Kids"
with Aperts
too!
Hope everyone has had a good Labor Day Weekend.
And Thanks to tyhe Jobes' for the virtual Bouquet.. Flowers on
Tuesday!!
WOW!!
Jenny in Georgia
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Date: Tue, 8 Sep 1998
15:15:27 -0400
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Hi to all our friends
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Hi Karen:
Our daughter Michelle use to walk right into the wall and other things.
It
was usually when she was turning and taking a step at the same time.
We
took her to an ophthalmologist and she had strabismus (cross-eyed but
you
really could not tell), which we did surgery in May of 1994. I don't
know
id this is Billy's problem but I thought it's worth looking into it.
Regards,
Ryan & Martha
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Date: Tue, 8 Sep 1998
20:52:58 EDT
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From: Yonstein@AOL.COM
Subject: Re: school
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Congratulations to Amy and to you Leanne. I am sure that it was
very
emotional for you. Emily's first birthday was emotional for me.
I can only
imagine what school will be like for her.
Hope all is well.
Janine
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Date: Tue, 8 Sep 1998
21:04:20 EDT
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From: Yonstein@AOL.COM
Subject: Re Book
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The author of Child in Pain is Dr. Leora Kuttner. I kept it on
file for the
future.
Hope this helps.
Janine
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Date: Tue, 8 Sep 1998
21:09:24 EDT
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From: Karen Sweet <Sweetkari6@AOL.COM>
Subject: Re: starting school
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I have the extreme fortunate of working with a student with Apert.
She is
such a delight in my classroom and everywhere she goes int he school
it seems
as if a beam of sunlight follows her. We have been very fortunate
in that the
other children have been very accepting of her and even ask about her
if she
is not in school. I have handled any questions in a very straightforward
manner and the other students have taken what I have said at face value.
I would like any additional information there might be on working with
school
age children. I teach elementary special education.
Karen Sweet
De Zavala Elementary
Houston Tx
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Date: Wed, 9 Sep 1998
17:38:09 EDT
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From: BBarn60368@AOL.COM
Subject: Re: starting school
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Jeanne,
Thanks for the suggestion about the letter you send with Nate to school.
I
have a daughter, Shirley, who started to kindergarten this past August
and I
have a few questions. Did Nate have any trouble in school?
Shirley has
always been a little behind in her language. She went to preK
in the public
school system for two years and they recommended a primary communications
kindergarten where they keep the emphasis on language. They kept
saying she
was behind because something was wrong or not developed. I kept
thinking
Shirley is just head strong and doesn't do anything until she is good
and
ready. Her I.Q. is slightly above average. Anyway, Shirley
just received her
first progress report. The teacher marked her below her grade
level. This
really surprised me as Shirley already knows her ABCs, colors, letter
sounds,
numbers, etc. How could she possibly be below grade level which
would be
beginning kindergarten? Any advice? Anyone else out there
have comments? I
have a conferance with the teacher some time to discuss the progress
report.
I'll let you know what she had to say.
Alice in Central Florida.
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Date: Wed, 9 Sep 1998
19:29:27 -0700
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: school progress...
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Our daughter is going from a 1/2 day kindergarden to a full day
kindergarden for the reason that the teacher feels that gr. 1 would
be
just too much for her. We cannot disagree as we feel that should she
fall behind in grade one, that would be harmful to her self esteem.
One
more year at the kindergarden level is only going to give her
(hopefully) a head start for 1999 school year.
We have been in constant communication with her teacher all year and
this came as no surprise...although she has made great gains and we
don't feel this is a negative in any way.
After saying all this...every child is different and I think it is
somewhat dangerous to start comparing your child to any other! They
will
develop at their own rate.
I didn't do particularily well in high school...but did do well in
university so I only have to look at myself to realize that we all
are
different!
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Date: Wed, 9 Sep 1998
21:22:33 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Hi to all our friends
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Karen-
Glad to hear Billy is on the mend and so glad to hear your daughter's
mishap
didn't turn out worse. She is very lucky. On the question
of bumps--
Jonathan is constantly bumping his head. I can be standing a few
inches from
him and still not intervene in time. I think a great deal of
it is still the
age and learning to keep his balance (it's worse when he's bandaged
like he is
now for the past 5 weeks). I worry too that he's is going to
do serious
damage but most of the time he hardly whimpers--he does rub the spot
on his
head where he hit though and then shakes it off and goes on with whatever
he
was trying to get into. At 21 months now, he is into everything
and quite the
climber. I'm afraid we have lot's more bumps to get through and
hopefully
none will be serious. We're going to Dallas tomorrow for a follow
up with his
cranial surgeon and am anxious to see what he thinks of Jonathan's
growth
progress.
Hang in there.
Best wishes,
Brenda
Houston
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Date: Thu, 10 Sep 1998
14:04:06 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: starting school
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Hi Alice, I'm sorry but I can't remember if Shirley has had to deal with much in the way of ops so far. Something we need to remember is that our children have operations that may not appear to have much effect on them because they bounce back so quickly, but don't be fooled. Generally speaking, while their bodies are doing all that healing - which goes on longer than it appears on the surface - they can't also be racing ahead with their learning. And if they are like our Amy they have learned to watch people pretty closely and will only do what they feel they need to for any one particular person.
So, if Shirley appears to be "behind" it may be that she is too busy healing, or catching up from the healing, or she might just be biding her time. You know her better than anyone else. Have faith in her to do what is right for her, and nudge her along where you think necessary. Don't let the "experts" give you the guilts because they are not comparing like with like when they look at their test results and our children. Listen to them, look at your daughter, think about all the extra she has to deal with, and then decide what needs to be done.
I have found with Amy that she will stay behind in something until I am right on the point of charging in and doing something about it, and then she will merrily bounce right on top again. I prefer to think it is me that hasn't enough patience rather than her doing it intentionally! I don't like to think she knows me THAT well!
Good luck with the conference. Can you take along from home the things she does do well for you?
Regards
Ann
NZ
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Date: Wed, 9 Sep 1998
21:29:24 -0500
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From: jamerman@UTI.COM
Subject: Nick's teacher
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Hi,
Going to make this short because my son should have been in bed a half
hour
ago.
I seen Nick's new teacher yesterday. She told me that she read the info
that I sent to school for his folder about apert's and hydro. So that
led
me into telling her about the listserv and Teeter's page.
Well today she pulled up Teeter's page and and clicked on Nick's page
to
show the class. The class thought this was really awesome to see nick
on
the computer. Just thought I would share that. Maybe this can lead
into a
class discussion somedayt to help his classmates learn about how mother
nature works sometimes and that Nick is not the only one and how none
of
these kids asked for this. It just happens.
Judy
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Date: Thu, 10 Sep 1998
12:09:25 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: Hi to all our friends
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In a message dated 9/6/1998 7:12:28 PM Pacific Daylight Time,
foster@ICONTECH.COM writes:
<< I do have one concern with Billy and that is he has been bumping
his head
an
awful lot since he is waiking around the funiture. Not on purpose
but he
seems to always hit his head first before the rest of his body
and sometimes
he hits it really hard. I know his head is bigger and heavier
but I am
concerned. Has anyone else had this problem? And how will he
ever walk
without falling and hitting his head? His next cranial appt.
is not until
the end of Sept.
>>
Evan just began walking a couple of months ago and went through that
stage
also. I think all toddlers do to some extent but we don't notice it
as much as
we aren't quite so concerned about "surgical heads". I had palpitations
the
first couple of times but had to get over it. He's gotten better but
initially
his balance was so shaky and everything is at that level. Also he loves
to
climb and kept going up things, then having a hard time coming down
and
falling backwards onto his head...right onto the shunt that was so
problematic
before. He's gotten slowly better- hang in there. One thing we had
to do was
to keep reminding him to look down as he would trip over carpet/bare
floor
interfaces and such. now he's kind of got it figured out to look where
he is
going a bit more.
Marianne
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Date: Thu, 10 Sep 1998
12:13:16 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: Hi to all our friends
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In a message dated 9/6/1998 9:59:03 PM Pacific Daylight Time, jkb@ELPASO.NET
writes:
<< My husband and I have decided it is because with Jacob's hands
being
the tulip kind when he was born, he didn't use them to help stabilize
himself >>
Hmmm- Evan has had his thumbs clear from birth but loves to have his
arms back
in a poition that makes mine hurt to watch. (We call it the "flying
bat-boy
act") His first OT worked long and hard to get him to bring his arms
forward
so he could push up,etc. I figured this was part of the reason that
he didn't
catch himself well when in the process of a "face plant". Anyone else
with
this experience?
Marianne
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Date: Thu, 10 Sep 1998
12:18:45 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: tissue expansion
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In a message dated 9/7/1998 4:08:12 PM Pacific Daylight Time, JobeCST@AOL.COM
writes:
<< Dr. Genecov said he
looked in to it and that it had not been proven very sucessful
in Apert
kids, >>
When I did an early lit search, I saw a journal article or two with
the same
conclusions. Our hand surgeon takes skin from the lower abdomen with
a
"pfannensteil" or bikini incision (like those routinely used for c-sections)
for the skin. Babies and toddlers have pretty loose skin there and
by the time
he's old enough to care the scar will barely be noiticeable- look just
like a
skin fold.
Marianne
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Date: Thu, 10 Sep 1998
12:24:38 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: Postop Bowels (was: Head
bumps)
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In a message dated 9/7/1998 6:43:46 PM Pacific Daylight Time,
howrdnan@IHUG.CO.NZ writes:
<< Amy had this after one of her surgeries and it was identified
as an
infecting organism (rotovirus from memory) that she had picked up in
hospital.
The staff automatically denied any possibility that she could have
caught it
in hospital, but as she hadn't been anywhere else its origins were
obvious. >>
Last year in Pittsburgh, there was a huge outbreak of rotavirus. Kids
were
being admitted right and left for dehydration. It was long enough after
Ev's
admission that it was the one thing he probably didn't get in the hospital.
It
was more severe though with vomiting and diarrhea...although he had
an
underlying shunt infection at the time also. If it lasts this long
and is not
making him dehydrated, I'd thing more about giardia. It is also seen
in the
community and can be spread in day care, schools etc. Anyone else in
the
family with problems? Has he lost weight? IS he just having looser
stools or
are they actually watery or with mucous? I agree with looking at dietary
issues like juice, fruit, etc. But stool cultures are easily done-
ask your
pediatrician. It will make you sleep better once an infectious cause
is ruled
out.
Marianne
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Date: Thu, 10 Sep 1998
21:23:48 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Hi to all our friends
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Marianne,
How old was Evan when he started walking? Nicole just had her
helmet fitted today
and the therapist there said that developmental wise she is like a
6-7 month old
and she is 11 months and one week old she will be one year old on October
3rd. So
she is a long ways from walking. But I guess each child is different.
She also
has no signs of teeth. My only consolation is she won't be bumping
her head any
time soon..
Take care
Raquel Miller
(Marianne Camous) wrote:
> In a message dated 9/6/1998 7:12:28 PM Pacific Daylight Time,
> foster@ICONTECH.COM writes:
>
> << I do have one concern with Billy and that is he has been
bumping his head
> an
> awful lot since he is waiking around the funiture. Not on purpose
but he
> seems to always hit his head first before the rest of his body
and sometimes
> he hits it really hard. I know his head is bigger and heavier
but I am
> concerned. Has anyone else had this problem? And how will he
ever walk
> without falling and hitting his head? His next cranial appt.
is not until
> the end of Sept.
> >>
>
> Evan just began walking a couple of months ago and went through that
stage
> also. I think all toddlers do to some extent but we don't notice
it as much as
> we aren't quite so concerned about "surgical heads". I had palpitations
the
> first couple of times but had to get over it. He's gotten better
but initially
> his balance was so shaky and everything is at that level. Also he
loves to
> climb and kept going up things, then having a hard time coming down
and
> falling backwards onto his head...right onto the shunt that was so
problematic
> before. He's gotten slowly better- hang in there. One thing we had
to do was
> to keep reminding him to look down as he would trip over carpet/bare
floor
> interfaces and such. now he's kind of got it figured out to look
where he is
> going a bit more.
>
> Marianne
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Date: Wed, 9 Sep 1998 20:42:10 -0800
To: Recipient List Suppressed:;
From: John Brosnan <digital@value.net>
Subject: Hiya
Mime-Version: 1.0
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<< YOU HAVE JUST BEEN HUGGED
,` \`-----'..
Y
,\ .~ ` - .
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,'
o |__
Y
_|
(#)
Y
_\ '`~-.
,'
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Y
/ ,'___ :/
\
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' ---...........-' ,'
Y ',
,......
,'
Y
' ,/ `,
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\ \
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Y
', ',-~'` ;
,=3D=3D=3D=3D=3D=3D,
Y
| ;
/__ ,'
Hunny ',
Y
/ /__
) \
POT /
Y
'-.
)----~' \_______/
Y
' - .......-`
PASS IT ON TO 5 PEOPLE WHO YOU CARE ABOUT AND SEND IT BACK To
THE PERSON
WHO SENT IT TO YOU
--------------------
<fontfamily><param>Geneva</param><bigger><bigger><<<<
<bold><color><param>8000,4000,0000</param><bigger> YOU
HAVE JUST BEEN
HUGGED
,` \`-----'..
Y ,\ .~ ` - .
Y ,' o |__
Y _| (#)
Y _\ '`~-. ,'
Y ,\ ,.-~-.' -., .'--~`
Y / / } ` -..,/
Y / ,'___ :/ \
Y /'`-.| `'-..'........ \
Y ; \ )-....|
Y | ' ---...........-' ,'
Y ', ,...... ,'
Y ' ,/ `, ,'
Y \ \ ,.- '
Y ', ',-~'` ; ,=3D=3D=3D=3D=3D=3D,
Y | ; /__ ,' Hunny ',
Y / /__ ) \ POT /
Y '-. )----~' \_______/
Y
' - .......-`
PASS IT ON TO 5 PEOPLE WHO YOU CARE ABOUT AND SEND IT BACK To
THE
PERSON WHO SENT IT TO YOU
</bigger></color></bold></bigger></bigger></fontfamily>
--part1_905408142_boundary--
--part0_905487330_boundary--
=========================================================================
Date: Fri, 11 Sep 1998
00:07:25 EDT
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: JobeCST@AOL.COM
Subject: Fwd: Fw: Fw: How to get Relief
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From: "Christy Louden" <clouden@camalott.com>
To: "Tonya Fender" <FENDER0203@aol.com>,
"Stacey & Chris Jobe"
<JobeCST@aol.com>,
"Sonny & Rita Tamez"
<sonny@camalott.com>,
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"Donna O'Dell" <wodell757@aol.com>,
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Subject: Fw: Fw: How to get Relief
Date: Thu, 10 Sep 1998 07:36:49 -0500
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How to get relief!
--------------------
<html><head></head><BODY bgcolor=3D"#FFFFFF"><p><font
size=3D3 color=3D"#0=
00000"
face=3D"Comic Sans MS"><br>How to get relief!<br><br></p>
</font></body></html>
--------------------
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From: "Chief Jackie R. Mayfield" <chfchief@cyberramp.net>
To: "ALLEN RUSSELL" <russell404@aol.com>,
"Bart Mitchell" <bartmitchell@yahoo.com>,
"Bobby Grashel" <bgrashel@cyberramp.net>,
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,
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=09<JB31219@cyberramp.net>,
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"WILL MAYFIELD" <st_wmayfield@tarleton.edu>,
"Willie Wisko" <Wwiskos@aol.com>
Subject: Fw: How to get Relief
Date: Wed, 9 Sep 1998 19:15:20 -0500
Message-ID: <01bddc50$186357a0$7c6f9ecf@dell>
X-Priority: 3
X-MSMail-Priority: Normal
X-Mailer: Microsoft Outlook Express 4.71.1712.3
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>enjoy
>
>This might cool you off a little!!!!!!!!
>
>
>
Snowballs in August
> Put your mouse at your down arrow of your
> scroll bar & Hold...
>
> VERY COOL!!!!!
>
> SNOWBALL !
> SNOWBALL !
> SNOWBALL
!
> SNOWBALL
!
> SNOWBALL
!
> SNOWBAL L
!
> SNOWBAL L
!
> SNOWBAL
L !
> SNOWBAL
L !
> SNOWBAL
L !
> SNOWBA L
L !
> SNOWBA L
L !
> SNOWBA
L L !
> SNOWBA
L L !
> SNOWBA
L L !
> SNOWB A
L L !
> SNOWB A
L L !
> SNOWB
A L L
!
> SNOWB
A L L
!
> SNOWB
A L L
!
> SNOW B
A L L
!
> SNOW B
A L L
!
> SNOW
B A L
L !
> SNOW
B A L
L !
> SNOW
B A L
L !
> SNO W
B A L
L !
> SNO W
B A L
L !
> SNO W
B A L
L !
> SNO
W B A
L L !
> SNO
W B A
L L !
> SN O
W B A
L L !
> SN O
W B A
L L !
> SN O
W B A
L L !
> SN
O W B
A L L
!
> SN
O W B
A L L
!
> S N
O W B
A L L
!
> S N
O W B
A L L
!
> S N
O W B
A L L
!
> S
N O W
B A L
L !
> S
N O W
B A L
L !
> S
N O W
B A L
L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
>
S N O
W B A
L L !
> S
N O W
B A L
L !
> S
N O W
B A L
L !
> S
N O W
B A L
L !
> S N
O W B
A L L
!
> S N
O W B
A L L
!
> S N
O W B
A L L
!
> SN
O W B
A L L
!
> SN
O W B
A L L
!
> SN O
W B A
L L !
> SN O
W B A
L L !
> SN O
W B A
L L !
> SNO
W B A
L L !
> SNO
W B A
L L !
> SNO W
B A L
L !
> SNO W
B A L
L !
> SNO W
B A L
L !
> SNOW
B A L
L !
> SNOW
B A L
L !
> SNOW
B A L
L !
> SNOW B
A L L
!
> SNOW B
A L L
!
> SNOWB
A L L
!
> SNOWB
A L L
!
> SNOWB
A L L
!
> SNOWB A
L L !
> SNOWB A
L L !
> SNOWBA
L L !
> SNOWBA
L L !
> SNOWBA
L L !
> SNOWBA L
L !
> SNOWBA L
L !
> SNOWBAL
L !
> SNOWBAL
L !
> SNOWBAL
L !
> SNOWBAL L
!
> SNOWBALL
!
> SNOWBALL
!
> SNOWBALL
!
> SNOWBALL !
> SNOWBALL !
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
> S
NOWBALL!
> S
NOWBALL!
> S
NOWBALL!
> S
NOWBALL!
> S
NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
S NOWBALL!
>
SNOWBALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW
BALL!
>
SNOW
BALL!
> SNOW
BALL!
> SNOW
BALL!
> SNOW
BALL!
> SNOW
BALL!
> SNOW
BALL!
>
SNOW
BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOW BALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
>
SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> SNOWBALL!
> S NOWBALL!
> S NOWBALL!
> S NOWBALL!
> S
NOWBALL!
> S
NOWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O W BALL!
> S
N O W BALL!
> S
N O W BALL!
> S
N O W
BALL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A L L!
> S
N O W
B A L L!
> S
N O W
B A L L!
> S
N O W
B A L
L!
> S
N O W
B A L
L!!
> S
N O W
B A L
L!!!
> S
N O W
B A L
L!!!!
> S
N O W
B A L
L!!!!!
> S
N O W
B A L
L!!!!!!
> S
N O W
B A L
L!!!!!
> S
N O W
B A L
L!!!!
> S
N O W
B A L
L!!!
> S
N O W
B A L
L!!
> S
N O W
B A L
L!
> S
N O W
B A L
L!
> S
N O W
B A L L!
> S
N O W
B A L L!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B A LL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
B ALL!
> S
N O W
BALL!
> S
N O W
BALL!
> S
N O W BALL!
> S
N O W BALL!
> S
N O W BALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N O WBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
N OWBALL!
> S
NOWBALL!
> S
NOWBALL!
> S NOWBALL!
> SNOWBALL!
>
>
>
AND NOW...........
>
>
> BAM!!!!!!
>
>
snowballsnowball
>
snowballsnowballsnowball
>
snowballsnowballsnowballsnowball
>
snowballsnowballsnowballsnowballsnowb
>
snowballsnowballsnowballsnowballsnowballsn
>
snowballsnowballsnowballsnowballsnowballsnob
>
snowballsnowballsnowballsnowballsnowballsnowba
>
snowballsnowballsnowballsnowballsnowballsnowball
> snowballsnowballsnowballsnowballsnowballsnowball
> snowballsnowballsnowballsnowballsnowballsnowbal
>
snowballsnowballsnowballsnowballsnowballsnowb
>
snowballsnowballsnowballsnowballsnowballsno
>
snowballsnowballsnowballsnowballsnowball
>
snowballsnowballsnowballsnowballsnow
>
snowballsnowballsnowballsnowball
>
snowballsnowballsnowball
>
GOTCHA!!!!!!!
>
>
>
CONSIDER YOURSELF HIT BY A SNOWBALL!
>
> You are now involved in an e-mail snowball fight.
> Send this to your friends.
> In this snowball fight no one gets frozen fingers and toes.
>
> PASS
IT ON TO ALL YOUR FRIENDS
> SPLAT!!!!
> YOU HAVE BEEN HIT!!
>
>
>
>
>
--part0_905486846_boundary--
=========================================================================
Date: Fri, 11 Sep 1998
00:33:55 EDT
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: JobeCST@AOL.COM
Subject: Fwd: Fw: We enjoyed your info
you sent>: Food for thought!!!
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From: "Christy Louden" <clouden@camalott.com>
To: "Tonya Fender" <FENDER0203@aol.com>,
"Stacey & Chris Jobe"
<JobeCST@aol.com>,
"Sonny & Rita Tamez"
<sonny@camalott.com>,
"Randall Castillo" <rwc-bjc@webtv.net>,
"Marilyn Fuller" <mjf95f@timon.acu.edu>,
"Lindsay Kissick" <daysigirl9@aol.com>,
"Leslie Bechdoldt" <lmb95w@timon.acu.edu>,
"Kerry & Lisa Fender"
<kerry@planetwide.com>,
"Donna O'Dell" <wodell757@aol.com>,
"Alison Henley" <henleya@pioneernrc.com>
Subject: Fw: We enjoyed your info you sent>: Food for thought!!!
Date: Thu, 10 Sep 1998 07:40:57 -0500
X-MSMail-Priority: Normal
X-Priority: 3
X-Mailer: Microsoft Internet Mail 4.70.1155
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>
> ?**Most Important Question**
> During my second month of nursing school, our professor gave
us a
> pop quiz. I was a conscientious student and had breezed through
the
> questions, until I read the last one: 'What is
the first name of the
> woman who
> cleans the school?" Surely this was some kind of joke.
I had seen the
> cleaning
> woman several times. She was tall, dark-haired and in
her 50s, but
> how would I
> know her name?I handed in my paper, leaving the last question
blank.
> Before class ended, one student asked if the last question
would count
> toward our quiz
> grade. Absolutely, said the professor. "In your careers you
will meet
> many people. All are
> significant. They deserve your attention and care, even
if all you
> do is smile and say hello". I've never forgotten that
lesson. I also
> learned her name was Dorothy.
> =3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
> ** Say a Prayer**
> I was taking my usual morning walk when a garbage truck pulled
up
> beside me. I thought the driver was going to ask for directions.
> Instead, he showed me a picture of a cute little five-year-old
boy.
> "This is
> my grandson, Jeremiah," he said. "He's on a life-support
system at a
> Phoenix hospital." Thinking he would next ask for a contribution
to
> his hospital bills, I reached for my wallet. But
he wanted
> something more than money. He said, "I'm asking everybody
I can to say
> a
> prayer for him. Would you say one for him, please?"
I did. And my
> problems didn't seem like much that day.
> =3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
> ** Pickup in the Rain**
> One night, at 11:30 pm, an older African-American woman was
standing
> on the side of a Alabama highway trying to endure a lashing
rain
> storm. Her car had broken down and she desperately needed a
ride.
> Soaking
> wet, she decided to flag down the next car. A young white
man
> stopped to help her-generally unheard of in those conflict-filled
> 1960s. The
> man took her to safety, helped her get assistance and put her
into a
> taxi cab. She seemed to be in a big hurry!
She wrote down his
> address, thanked him and drove away. Seven days went
by and a knock
> came on
> the man's door. To his surprise, a giant combination
console color TV
> and stereo record player
> were delivered to his home. A special note was attached.
The note
> read: Dear Mr. James: Thank
> you so much for assisting me on the highway the other night.
The rain
> drenched not
> only my clothes but my spirits. Then you came along.
Because of
> you, I was able to make it to my dying husband's bedside just
before he
>
> passed away. God bless you for helping me and unselfishly
serving
> others.
> Sincerely, Mrs. Nat King Cole.
> =3D=3D=3D=3D=3D=3D=3D=3D=3D
> ** Giving Blood**
> Giving Blood Many years ago, when I worked as a volunteer at
> Stanford Hospital, I got to know a little girl named
Liza who was
> suffering from a disease and needed a blood transfusion from
her
> five-year-old brother, who had miraculously survived the same
disease
> and had developed the antibodies needed to combat the illness.
The
> doctor explained the situation to her little brother, and asked
the boy
> if
> he would be willing to give his blood to his sister.
I saw him
> hesitate for
> only a moment before taking a deep breath and saying, "Yes,
I'll do
> if it will save Liza." As the transfusion progressed,
he lay in bed
> next to his sister and smiled, as we all did, seeing the color returning
> to
> her cheeks. Then his face grew pale and his smile faded.
He looked up
>
> at the doctor and asked with a trembling voice,
"Will I start to die
> right
> away?" Being young, the boy had misunderstood
the doctor; he
> thought he was going to have to give her all his blood.
> =3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
> ** Two Nickels and Five Pennies**
> In the days when an ice cream sundae cost much less, a 10-year-old
> boy entered a hotel coffee shop and sat at a table. A
waitress put a
> glass of water in front of him. "How much is an ice cream
sundae?"
> "Fifty cents," replied the waitress. The little boy pulled
his hand
> out of his pocket and studied a number of coins in it.
"How much is a
> dish
> of plain ice cream?" he inquired. Some people were now
waiting for a
> table and the waitress was a bit impatient. "Thirty-five
cents," she
> said brusquely. The little boy again counted the coins. "I'll
have the
> plain ice cream," he said. The waitress brought the ice
cream, put
> the bill on the table and walked away. The boy finished the
ice
> cream, paid the cashier and departed. When the waitress
came back, she
>
> began wiping down the table and then swallowed hard at what
she saw.
> There, placed neatly beside
> the empty dish, were two nickels and five pennies - her tip.
>
>
> --------- End forwarded message ----------
>
>
--------------------
<html><head></head><BODY bgcolor=3D"#FFFFFF"><p><font
size=3D3 color=3D"#0=
00000"
face=3D"Comic Sans MS"><br><br>> <br>> ?**Most
Important
Question**<br>> During my second month of nursing
school, our
professor gave us a<br>> pop quiz. I was a conscientious
student =
and
had breezed through the<br>> questions, until
I read the la=
st
one: 'What is the first name of the<br>> woman
who<br>>
cleans the school?" Surely this was some kind of
joke. I =
had
seen the<br>> cleaning<br>> woman several
times. She was
tall, dark-haired and in her 50s, but<br>> how would
I<br>>
know her name?I handed in my paper, leaving the last question
blank.<br>> Before class ended, one student asked
if the la=
st
question would count<br>> toward our quiz<br>>
grade.
Absolutely, said the professor. "In your careers you will
meet<br>>=
;
many people. All are<br>> significant.
They deserve y=
our
attention and care, even if all you<br>> do is
smile and say
hello". I've never forgotten that lesson. I
also<br>>
learned her name was Dorothy.<br>> =3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D<br>>
** Say a Prayer**<br>> I was taking my usual morning
walk when a
garbage truck pulled up<br>> beside me. I thought
the driver was
going to ask for directions.<br>> Instead, he
showed me a
picture of a cute little five-year-old boy.<br>> "This
is<br>>
my grandson, Jeremiah," he said. "He's
on a life-sup=
port
system at a<br>> Phoenix hospital." Thinking
he would next a=
sk
for a contribution to<br>> his hospital bills,
I reached for my
wallet. But he wanted<br>> something
more than money.
He said, "I'm asking everybody I can to say<br>>
a<br>>
prayer for him. Would you say one for him, please?"
 =
;I
did. And my<br>> problems didn't seem
like much that
day.<br>> =3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D<br>>
** Pick=
up in the Rain**<br>>
One night, at 11:30 pm, an older African-American woman was
standing<br>> on the side of a Alabama highway
trying to endure a
lashing rain<br>> storm. Her car had broken down
and she desperat=
ely
needed a ride.<br>> Soaking<br>> wet,
she decided to flag down=
the
next car. A young white man<br>> stopped to help
her-generally
unheard of in those conflict-filled<br>> 1960s. The<br>>
 =
;man
took her to safety, helped her get assistance and put her into a<br>>
taxi cab. She seemed to be in a big hurry! She
wro=
te
down his<br>> address, thanked him and drove away.
Seven da=
ys
went by and a knock<br>> came on<br>> the
man's door. To=
his
surprise, a giant combination console color TV<br>> and stereo
record
player<br>> were delivered to his home. A special
note was
attached. The note<br>> read: Dear Mr.
James: Thank<br>>=
you
so much for assisting me on the highway the other night. The
rain<br>> drenched not<br>> only my clothes
but my spirits.
Then you came along. Because of<br>>
you, I was able =
to
make it to my dying husband's bedside just before he<br>>
<br>>
passed away. God bless you for helping me and unselfishly
serving<br>> others.<br>> Sincerely,
Mrs. Nat King Cole.<br>&g=
t;
=3D=3D=3D=3D=3D=3D=3D=3D=3D<br>> ** Giving Blood**<br>>
=
Giving Blood Many
years ago, when I worked as a volunteer at<br>> Stanford
Hospital=
,
I got to know a little girl named Liza who was<br>>
sufferi=
ng
from a disease and needed a blood transfusion from her<br>>
five-
year-old brother, who had miraculously survived the same disease<br>>
and had developed the antibodies needed to combat the illness.
The<br>> doctor explained the situation
to her little broth=
er,
and asked the boy<br>> if<br>> he would
be willing to give his
blood to his sister. I saw him<br>> hesitate for<br>>
only a moment before taking a deep breath and saying, "Yes,
I'l=
l
do<br>> if it will save Liza."
As the transfusio=
n
progressed, he lay in bed<br>> next to his sister and smiled,
as we all
did, seeing the color returning<br>> to<br>> her
cheeks.
Then his face grew pale and his smile faded. He
looked up<br>&=
gt;
<br>> at the doctor and asked with
a trembling voice,
"Will I start to die<br>> right<br>> away?"
Be=
ing
young, the boy had misunderstood the doctor; he<br>>
thought he was going to have to give her all his blood.<br>>
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D<br>> ** Two Nickels and Five
Pennies**<br>> In the days when an ice cream sundae
cost much les=
s, a
10-year-old<br>> boy entered a hotel coffee shop
and sat at a tab=
le.
A waitress put a<br>> glass of water
in front of him.
"How much is an ice cream sundae?"<br>>
"Fif=
ty
cents," replied the waitress. The little boy pulled
his
hand<br>> out of his pocket and studied a number
of coins in it.
"How much is a<br>> dish<br>>
of plain ice cream?&q=
uot;
he inquired. Some people were now waiting for a<br>>
table =
and
the waitress was a bit impatient. "Thirty-five cents,"
she<br>> said brusquely. The little boy again counted
the coins.
"I'll have the<br>> plain ice cream,"
he said. Th=
e
waitress brought the ice cream, put<br>> the bill
on the table an=
d
walked away. The boy finished the ice<br>> cream, paid
the cashie=
r
and departed. When the waitress came back, she<br>>
<br>> bega=
n
wiping down the table and then swallowed hard at what she
saw.<br>&g=
t;
There, placed neatly beside<br>> the empty dish,
were two nickels=
and
five pennies - her tip.<br>> <br>> <br>>
--------- End
forwarded message ----------<br>> <br>> </p>
</font></body></html>
--part0_905488436_boundary--
=========================================================================
Date: Fri, 11 Sep 1998
12:59:13 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Hi to all our friends
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Hi Raquel:
Our daughter Michelle did not walk until she was 18 months old, and
her
teeth came in late but we don't remember when.
Take care,
Ryan & Martha
=========================================================================
Date: Fri, 11 Sep 1998
13:31:20 EDT
Reply-To: Information exchange and Internet
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From: NephiRose@AOL.COM
Subject: Re: Hi to all our friends
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi y'all and Marianne:
I used to worry myself silly whether Sarah V. would walk or not.
Visions of
carrying a 40 lb kid tired me out already! She started to walk
at 23 months.
She had the ability, it just didn't sink in that she was actually supposed
to
walk until we borrowed a mini-walker (like the ones the old folks use).
We
encouraged her to use it for about a week, then she started taking
off on her
own. We returned the walker and now she is into everything!
As for her
teeth, hers came in late too. She is 25 months and she has 6
teeth. I hope
it stays that way for a while as her mouth will get tooo crowded.
She doesn't
have enough room. Hang in there!
Belinda Vicars
(Utah)
=========================================================================
Date: Fri, 11 Sep 1998
21:53:50 EDT
Reply-To: Information exchange and Internet
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From: Yonstein@AOL.COM
Subject: Re: Falling "Face Plant"
Mime-Version: 1.0
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I laughed when I read Marianne's description of falling. Although
Emily is
not yet walking, 13 months, she does that same thing from a sitting
position.
She is now just starting to protect herself and put her hands down.
That is
what her PT has been working on more and more so that when she does
start to
walk she will not hurt herself.
Em also keeps her arms back all the time. She is also very resistive
to too
much touch on her hands, like when I try to pull them forward or keep
them
there.
Judy, I think it's great that the class was able to see and read about
Nick
and the other kids. Knowledge is the best way for them to understand
what
Nick has had to go through and then to see how well he has done and
all that
he has accomplished.
Best wishes to all,
Janine
=========================================================================
Date: Fri, 11 Sep 1998
23:11:21 EDT
Reply-To: Information exchange and Internet
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From: Nodrmat26@AOL.COM
Subject: Zoey and Walking
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hello All!
Zoey's Mom here and was just wondering if Zoey holds the record on taking
the
longest to walk and to get teeth. She's 20 months old this month
and hasn't
so much as taken a step on her own. Not one single solitary tooth,
either.
I'm not saying I'm in any way dissapointed in her, just kinda curious
to see
if she holds any records! :o)
Christina
In rainy (finally) San ANtonio
=========================================================================
Date: Sat, 12 Sep 1998
09:08:35 EDT
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From: Patbrat718@AOL.COM
Subject: teeth cutting and walking
Mime-Version: 1.0
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Jasmyn started walking at twelve months, she actually did this with
her casts
on her legs. She didn't cut her first tooth until 15 months,
and they have
always been a bear to get in. She had preventive care starting
at three
months, and until she was two and a half (she graduated), they always
scored
her below her age expectations. Today, at ten, and in the fifth
grade, she
struggles, but more importantly, she accomplishes. I wish someone
had told me
this nine years ago.... Your baby is going to make their own place
in this
world, God already has that planned out. Don't worry too
much about
tomorrow, spend your time enjoying the love they bring to you.
Jasmyn has
always known that I love her, I just didn't get to enjoy it as much
as I would
have like to.....and bummer, I can't get that back.
=========================================================================
Date: Sat, 12 Sep 1998
10:21:37 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Ramblings:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Dear Friends:
We're coming in on the home stretch. Seth's surgery is Tuesday
so I am
trying to get all my ducks in a row. I had to take Seth out of
school last
Tuesday because he developed an eye infection and we had to race 120
miles
to St. Charles to see his ophthalmologist. The appointment was
at 4:15 and
despite delays due to construction on the MLK bridge and a terrible
wreck
at the St. Charles exit we managed to walk into the doctors office
at 4:17.
We spent the night with Seth's sister in St. Louis because Seth
had an
appointment with a child psychologist at Children's Hospital the next
day.
Seth and I watched the Cardinals game on TV with Delaney and her room
mates. It was great seeing Mark McGuire hit his 62nd home run.
I hope
Seth will remember it, I know I will.
The visit with the child psychologist was very interesting. The
bottom
line was that Seth understood the surgery that he was about to have,
he was
afraid but trusted us to take care of him. She felt that his
understanding
was as good as could be expected from a seven year old. I left
her office
feeling much better about the up coming surgery.
Seth was unable to return to school on Thursday because of an out break
of
a virus that seemed to cause a high fever in several of the students.
I
hope he escaped exposure, however, his best friend, Joel, didn't.
Isn't
this always the case.
Friday I went to Seth's class to explain about the surgery and to answer
any concerns. I don't believe that I can accurately convey the
experience
to you, however, I want to try. The children were wonderful.
They
listened to my explanation intently, they expressed some concerns,
but
mostly wanted me to tell Seth that they cared about him and wanted
him to
come back soon. As I left many children brought up notes that
they had
written, pencils and bits of things from their desk, things that must
have
had some special meaning to each of them, to give to Seth. It
was so
touching. One little girl, named Lena, seemed to feel especially
tender
about Seth's upcoming surgery. In her note, she wrote that she
would teach
Seth how to tie his shoes when he got back. More than one boy
wrote that
Seth was his best friend in addition to any well wishes. Being
someone's
best friend at this age must be very important.
Speaking of best friends, last week Seth's best friend, Joel,
said, "I
just want you to know, if anything happens I will always remember you
fondly." I was a little taken back but, luckily, Seth just shrugged
it
off.
It is amazing how deeply one person can touch the lives of others.
I have
received word that prayers are being said for Seth is almost every
Church
in Carbondale. We are not alone, there is a whole community out
there that
cares for each of us. I have asked members of our church pray
for several
of you out there in cyber land. They don't know you personally,
they only
know you through me and I know you through the internet. I do
believe that
someday this will truly become a world community and it will happen
through
people like us. As we touch each others lives we create a sense
of caring
and of responsibility toward each other. Each of us is like a
stone thrown
into a pool of still water. The ripples we cause have far reaching
effects.
Peace, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Sun, 13 Sep 1998
11:57:09 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Various
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Greetings
>Zoey's Mom here and was just wondering if Zoey holds the record on
taking the
longest to walk and to get teeth. She's 20 months old this month
and hasn't
so much as taken a step on her own.
Amy was starting to pull up to furniture at 12 months and then they
operated on her feet, putting her back on her bottom. She finally
walked at 21 months.
>Em also keeps her arms back all the time. She is also very resistive
to too
much touch on her hands, like when I try to pull them forward or keep
them
there.
We were encouraged to support Amy's shoulders so they were held forward
when she was sitting or lying. She avoided putting her hands into
anything soft like playdough or face paint but loved playing with sand
and gravel (small stones).
Have you read Leslie Biron Campis' paper "Children with Apert Syndrome: Developmental and Psychologic Considerations" in the 1991 Clinics in Plastic Surgery? It has been a while since I read this and having just revisited it I can really recommend it - it has sections on the "Toddler and Preschool Developmental period", "The School-Age Period" and "Adolescence". A couple of quotes that tie in with some recent conversations:
p. 409 An adolescent boy with Apert syndrome addressed his science paper to the class and explained his condition thus: "A perfect plant or animal happens when no mistakes get into the genetic message, but you need to remember that there is no such thing as a perfect person or plant. Sometimes one of the genes changes just a tiny little bit like in Apert's Syndrome. The mistake is very small but it is big enough to change a life."
p. 411 The following excerpt is one boy's account of this common experience
and his wish to alter others' perceptions of himself: "Here is an
example of what it is like to have Apert's Syndrome. Imagine you
are outside at recess and having a nice time when suddenly a second grader
comes up to you and says, 'Are you retarded?' What would you do?
(a) leave the area; (b) tell the kid that you are not retarded; or (c)
not say anything. At the time this happened I did (a) leave the area.
But now I would say, 'No I am not retarded. I was born this way'
So it is true that when you compare me with other kids, we are a little
different, but being different does not stop me from doing things I like."
Cheers
Ann
NZ
=========================================================================
Date: Sun, 13 Sep 1998
09:55:37 +1000
Reply-To: Information exchange and Internet
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Re: Zoey and Walking
MIME-Version: 1.0
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Hi Christina
No She doesn't hold the record for walking Ashleigh is 3 years and 4
months
old and still is not walking and I can't even see it getting near I
think
she actually may hold the record dont know why she is so slow, but
she did
start cutting teeth at 14 months.
So dont feel so bad.
Carol
=========================================================================
Date: Sun, 13 Sep 1998
10:00:04 +1000
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Fw:
Zoey and Walking
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
--
Hi Christina
Well I thing Ashleigh may hold the record as she is 3years and 4months
old
and still no signs of walking as yet. She wont even pull herself
up around
furniture not sure why? but we are having constant physio and she has
a
walking frame, but once upon a time she would not even straighten her
legs
to stand up with our help and now she at least does this so there has
been
some improvement. I suppose she will just walk when she is ready.
Ashleigh did start cutting teeth at about 14months.
Carol
=========================================================================
Date: Sun, 13 Sep 1998
10:03:35 +1000
Reply-To: Information exchange and Internet
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Fw: Loose Bowels
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Original Message-----
From: Carol or Jason <carolh@hotkey.net.au>
To: APERT@LISTSERC.AOL.COM <APERT@LISTSERC.AOL.COM>
Date: Tuesday, 8 September 1998 17:22
Subject: Re: Loose Bowels
>Hello All,
>
>Ashleigh my 3 year old has also experienced bouts of loose bowel movements
>and after having her stools checked and not finding anything in the
results
>put this down to her having too much apple juice. After cutting
this out
it
>did get better it had lasted for about 3 months and I was starting
to get
>worried as well as going through numerous amounts of clothing as the
nappies
>just would not hold.
>
>We now only give her limited amounts of juice or water it down.
She has
had
>a couple more episodes of this and I did ask her paediatrician about
it who
>has said that there might be a particular type of bug that can reoccur
and
>next time it happens we would check for this.
>
>Carol
>
=========================================================================
Date: Sat, 12 Sep 1998
21:36:43 EDT
Reply-To: Information exchange and Internet
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From: GSieb91515@AOL.COM
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Dori-
More prayers will be coming from Kingwood, Tx. I hope that Seth
is able to
escape the virus his friend has. I was deeply touched by your
words tonight.
You said it all so perfectly. If only everyone could feel the
closeness that
we have developed without even meeting each other personally.
It sounds like Seth really has a great class and I can only hope that
when
Jonathan reaches school age the classmates will be as nice.
Give Seth a big hug from us and please let us know how it goes.
Warmly,
Brenda
Houston
=========================================================================
Date: Sat, 12 Sep 1998
21:48:23 EDT
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From: GSieb91515@AOL.COM
Subject: Re: starting school
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Alice-
Good luck with the report. It sure doesn't sound like your daughter
is below
grade level and I think it is important to express your concerns as
early as
possible.
Brenda
Houston (Not looking forward to doing battle with the school when Jonathan
reaches that age.)
=========================================================================
Date: Sat, 12 Sep 1998
21:53:40 EDT
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From: GSieb91515@AOL.COM
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Robin,
Well said. My non-apert child went to pre-k when she could have
gone straight
to kindergarten. I felt the same way. I would much rather
hold her back
before she had developed friendships, etc. It's also nice having
her be the
oldest in the class as opposed to the youngest. She has a summer
birthday and
I have not regretted holding her back a year at all.
Brenda
Houston
=========================================================================
Date: Sat, 12 Sep 1998
21:56:27 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Hi to all our friends
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Marianne-
Jonathan used to do the same thing. Once he started walking with
confidence
(14 months) though he relaxed his arms. I haven't noticed him
doing that in a
long time. I used to think it had something to do with his limited
shoulder
range. Maybe that has improved also. We haven't been to
the ortho in a year
and need to go ahead a get a thorough exam done soon.
Brenda
Houston
=========================================================================
Date: Sat, 12 Sep 1998
22:16:08 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey and Walking
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Carol~
Thanks for responding. I don't think the emotion is feeling bad,
it's just a
little frustrating. Zoey's so strong, her body and her mind,
that I wonder if
she's not walking because she simply doesn't want to. I wish
that I could
read her mind. Maybe, a contributing factor is also that she
can't talk yet,
due to her trach. I have to remind myself all the time that she
is going
through all the motions all other kids go through, just at her own
pace and
that I need to enjoy every moment, as I did with my older daughter.
Christina
=========================================================================
Date: Sun, 13 Sep 1998
12:02:01 EDT
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From: BBarn60368@AOL.COM
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Dori,
Your letter was so inspirational. Your thoughts and the fact that
you shared
them so freely with us is the reason why I am so proud to be a part
of this
very special group of "Apert Parents". Anyone that, at one time
questioned,
why me God? It should be evident. What a joy and a priviledge
to be part of
a group that helps spread God's intent for us all. To spread
love and to
genuinely care for each other.
Thank you so much and keep it up!!
Love to you all and God Bless!
Alice in Central Florida
=========================================================================
Date: Sun, 13 Sep 1998
12:11:38 EDT
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From: BBarn60368@AOL.COM
Subject: Re: teeth cutting and walking
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Patbrat,
Your e-mail was just what I needed. I have been so worried about
my Shirley.
She is 5 and just received her first progress report in kindergarten.
She was
rated below grade level and I have been worrying ever since about what
to do.
Nothing is a pretty good answer. Just continue to love and support
her and
most importantly: enjoy her for every minute. She is so precious
and they
grow up so fast.
Thanks again, Alice in Central Florida.
=========================================================================
Date: Sun, 13 Sep 1998
12:33:41 EDT
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From: BBarn60368@AOL.COM
Subject: Re: Zoey and Walking
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Christina,
I think there may be something to the comment you made about Zoey not
walking
simply because she doesn't want to. My Shirley is like that.
She was
prescribed glasses at 17 months and would not wear them. We tried
everything
including putting her arms in splints so she couldn't bend them to
take the
glasses off. If a doctor had not recommended it we would have
been taken off
for child abuse. Needlessly to say we tried that only once.
I even seriously thought about quiting my job so I could devote all
my time to
trying to get her to wear these glasses. Finally after almost
a year of this
the doctor told us to stop it all. After a short period of time
she asked for
her glasses and has been wearing them ever since.
She was the same way about potty training. She just didn't see
any advantage
to it. Finally at 4 yrs. old she went to visit my sister.
My sister just put
her panties on and didn't mention a diaper. She came home potty
trained.
These kids are amazing with their independence, will power, and strength.
Shirley is, at least and they are all so much alike in the other areas.
Love to all,
Alice in Central Florida
=========================================================================
Date: Sun, 13 Sep 1998
13:37:20 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: walking etc
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Evan was 16 months when we moved to Calif. At that time he was only
doing a
"commando crawl" unable to get up on his hands and knees. He figured
that out
pretty quickly, began cruising in the spring after restarting therapy
here in
march or April and began walking around his 2nd birthday in July. Since
then
he has thrown caution to the wind and is hurtling through time and
space.
Last night was the best yet...He was sitting in his high chair having
finished
dinner and the "after dinner mixed media art project" with the remains
and
needed something to do while the rest of us finished up. So my husband
says in
his very quiet way.."Look at Evan" I turned and there he was nonchalantly
waving his trach around by the trach ties making his usual "air leak"
noises
and having a grand old time. Maybe we should rethink decannulation?
I popped a
clean one back in ...then had palpitations after. Two minutes later
the little
index finger was heading back under the collar of the trach and mom
let forth
with a "No!" that about sent him into orbit. Guess we might have to
go to
those yukky twill-tape ties.
Marianne
Never a dull moment.....
=========================================================================
Date: Sun, 13 Sep 1998
14:11:30 -0400
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Ramblings:
Mime-Version: 1.0
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Dear Dori, We're almost there. Just a few more days and we can
look back on
it. Your visit to Seth's school sounds great. I think it
makes such a
difference if we can be proactive enough to draw others in and around
us to
let them support us through these times. The kids in Seth's class
will be
so happy to have him back and will be understanding about what he is
going
through. You've seeded a few allies too, haven't you.
Interesting to hear the psychologist point of view. We always
wonder how
the kids are coping with what they have to do. So nice also to
have the
reassurance that all is well with your child.
I hope you can stay healthy. I know that's on my mind too. Your
concluding
sentiments reflect very much the way I feel about the people around
us. I
wrote to our kids' school to inform them of EvaJessie's absense because
of
surgery and about who would be picking Thomas up from school while
we are
away. I ended by asking the teachers to help us support our children
as
they cope with this disturbance in their lives. I
do beleive that if you
hold your hand out, someone will take it and help. If you will
allow them
into your life, they will be part of your support system.
EvaJessie's entry in to Kindy with her big balloon on her face has been
wonderful and smooth. We are fortunate to be surrounded by a
lot of
gracious people who are looking out for us along the way.
I suppose you could say we're making our own set of ripples up this
way.
Thanks for that, Dori. You said it so well.
We'll be thinking of you from Vancouver on Tuesday. We are up
Wednesday for
an estimated six hours. I keep telling myself to focus on the
beyond. Just
the other day EvaJessie and one of the boys from her Kindy class
were
running ahead of me, holding hands and laughing. It was one of
those
gorgeous early fall days, warm sun. And two little kids running
across the
school yard. I captured that, and that is my image for this surgery.
When
this is all done, I know I'll see her for real, running and playing
with her
friends again.
I'm sure you are as tired as I am. Just wanted to wish you and
Seth special
good luck from us.
Pat in Calgary
Dori wrote:
I do believe that
>someday this will truly become a world community and it will happen
through
>people like us. As we touch each others lives we create a sense
of caring
>and of responsibility toward each other. Each of us is like
a stone thrown
>into a pool of still water. The ripples we cause have far reaching
>effects.
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of
the shore
for a very long time. Andre Gide
=========================================================================
Date: Mon, 14 Sep 1998
09:12:00 +0000
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From: Chris Wood <cepuvic@PEGASUS.COM.AU>
Subject: Re: Zoey and Walking
In-Reply-To: <d523d3cd.35f9e659@aol.com>
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> Date: Fri, 11
Sep 1998 23:11:21 EDT
> Reply-to: Information exchange and
Internet safe haven for Apert Syndrome
>
and other craniofacial anomalies
> From: Nodrmat26@AOL.COM
> Subject: Zoey and Walking
> Hello All!
>
> Zoey's Mom here and was just wondering if Zoey holds the record on
taking the
> longest to walk and to get teeth. She's 20 months old this
month and hasn't
> so much as taken a step on her own. Not one single solitary
tooth, either.
> I'm not saying I'm in any way dissapointed in her, just kinda curious
to see
> if she holds any records! :o)
>
> Christina
> In rainy (finally) San ANtonio
>
Hi Christina,
Before you go claiming the record, Emma my daughter will be five in
October and she still is not walking! Although she does have plenty
of teeth. Her walking progress seemed to have stopped about 3 years
ago. We are hoping that with improvements to her oxygen levels during
sleep that her energy levels and strength will improve and therefore
she will start trying to walk again. Mind you, she does have some
problems with her joints which are not assisting her and our efforts.
Cheers
Chris Wood
>
=========================================================================
Date: Mon, 14 Sep 1998
12:57:22 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Ramblings:
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Dear Dori
>We're coming in on the home stretch. Seth's surgery is Tuesday
so I am
>trying to get all my ducks in a row.
It sounds as though you're going to make it with time to spare. Your session with Seth's class sounds incredibly empowering - and very emotional. Every best wish for a smooth day on Tuesday, and hugs to you both.
>I do believe that
>someday this will truly become a world community and it will happen
through
>people like us.
I like to believe we already have this here.
Ann
NZ
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Date: Sun, 13 Sep 1998
22:04:04 EDT
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From: Yonstein@AOL.COM
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This is a special wish of good luck to both Seth and EvaJessie for their
upcoming surgeries this week. Hope all goes well for both of
them and Moms,
too.
Dori, sounds like the kids in school were very receptive to learning
about
Seth and his operation. That's a great thing.
Pat, I am glad that EvaJessie's transition to Kindergarten was so smooth.
Sounds like she already has made some good friends.
Best wishes,
Janine
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Date: Sun, 13 Sep 1998
22:56:44 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey and Walking
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Zoey's Mom here, just wanted to update everyone on Zoey's walking.
She took
her first step today. Usually, when she's standing up holding
onto something
and I hold my arms out just far enough, so that she'll have to take
a few
steps, she just looks at me like "what?". But today, she reached out
her arms,
took a step and then flung herself into my arms. I'm so proud
of her. She's
getting stronger every day. I'm sure that sometime soon, I'll
be chasing her
all around the house and grocery stores and wonder why I wanted her
to walk at
all. (smile). Thanks everyone for being there.
Christina
San ANtonio
=========================================================================
Date: Sun, 13 Sep 1998
22:28:18 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Ramblings:
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D. Jefferson wrote:
> Dear Friends:
>
> We're coming in on the home stretch. Seth's surgery is Tuesday
so I
> am
> trying to get all my ducks in a row. I had to take Seth out
of school
> last
> Tuesday because he developed an eye infection and we had to race
120
> miles
> to St. Charles to see his ophthalmologist. The appointment
was at
> 4:15 and
> despite delays due to construction on the MLK bridge and a terrible
> wreck
> at the St. Charles exit we managed to walk into the doctors office
at
> 4:17.
> We spent the night with Seth's sister in St. Louis because
Seth had
> an
> appointment with a child psychologist at Children's Hospital the
next
> day.
> Seth and I watched the Cardinals game on TV with Delaney and her
room
> mates. It was great seeing Mark McGuire hit his 62nd home run.
I
> hope
> Seth will remember it, I know I will.
>
> The visit with the child psychologist was very interesting.
The
> bottom
> line was that Seth understood the surgery that he was about to have,
> he was
> afraid but trusted us to take care of him. She felt that his
> understanding
> was as good as could be expected from a seven year old. I left
her
> office
> feeling much better about the up coming surgery.
>
> Seth was unable to return to school on Thursday because of an out
> break of
> a virus that seemed to cause a high fever in several of the students.
> I
> hope he escaped exposure, however, his best friend, Joel, didn't.
> Isn't
> this always the case.
>
> Friday I went to Seth's class to explain about the surgery and to
> answer
> any concerns. I don't believe that I can accurately convey
the
> experience
> to you, however, I want to try. The children were wonderful.
They
> listened to my explanation intently, they expressed some concerns,
but
>
> mostly wanted me to tell Seth that they cared about him and wanted
him
> to
> come back soon. As I left many children brought up notes that
they
> had
> written, pencils and bits of things from their desk, things that
must
> have
> had some special meaning to each of them, to give to Seth.
It was so
> touching. One little girl, named Lena, seemed to feel especially
> tender
> about Seth's upcoming surgery. In her note, she wrote that
she would
> teach
> Seth how to tie his shoes when he got back. More than one boy
wrote
> that
> Seth was his best friend in addition to any well wishes. Being
> someone's
> best friend at this age must be very important.
>
> Speaking of best friends, last week Seth's best friend, Joel,
said,
> "I
> just want you to know, if anything happens I will always remember
you
> fondly." I was a little taken back but, luckily, Seth just
shrugged
> it
> off.
>
> It is amazing how deeply one person can touch the lives of others.
I
> have
> received word that prayers are being said for Seth is almost every
> Church
> in Carbondale. We are not alone, there is a whole community
out there
> that
> cares for each of us. I have asked members of our church pray
for
> several
> of you out there in cyber land. They don't know you personally,
they
> only
> know you through me and I know you through the internet. I
do believe
> that
> someday this will truly become a world community and it will happen
> through
> people like us. As we touch each others lives we create a sense
of
> caring
> and of responsibility toward each other. Each of us is like
a stone
> thrown
> into a pool of still water. The ripples we cause have far reaching
> effects.
>
> Peace, Dori
>
> Dori A. Jefferson
> djeff@midwest.net
Hi everyone its Kelly here!
First I want to wish Seth and EveJessie good luck on their surgeries.
I
will be thinking about them and anxious to hear how their surgeries
went. I wanted to let you know, Dori, that your letter was so touching
it brought me to tears. I read it again tonight and it brought me to
tears again. Little kids can be so sweet. I think it's great that Seth
has such special friends.
Talk to you soon,
Kelly Spadini
Ca
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Date: Mon, 14 Sep 1998
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From: Jenngram@AOL.COM
Subject: Re: Ramblings:
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We wanted to wish Seth a speedy recovery on his upcoming surgery.
He is very
lucky to have such a nice group of friends, who care about him so much.
We too head in for surgery this morning...release of right index finger.....if
blood supply cooperates. We're crossing our fingers....no pun intended!!!!!
We
had Jordans 1st b-day party Sat. due to bandages being present on the
real one
Friday. Like everyones 1st, I'm sure, it proved to be a bit emotional
for Joe
and I........but we both agreed the stress, long post-op nights giving
a bit
of extra love (to Jordan as well to each other), and numerous
doctor visits
has turned us into different people....better ones at that. And as
we watched
Jordan demolish into his own little personal cake, along with neighbors,
friends, and family who have been with us through this first year,
we realized
that this was as much a party for all of us as it was for him!!!!!!
Hope all is well out there....
Jenn(Tampa/St. Pete)
=========================================================================
Date: Mon, 14 Sep 1998
07:29:14 EDT
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From: Jenngram@AOL.COM
Subject: Re: Ramblings:
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We'll be thinking of EvaJessie and her surgery as well, ans wishing
for a
speedy recovery too.....busy one in the ORs this week, eh?
Jenn(Tampa/St. Pete)
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Date: Mon, 14 Sep 1998
11:16:18 -0500
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: Ramblings:
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Dori,
You all are in our thoughts and prayers for Seth's surgery.
Laurie Bailey & family
jkb@elpaso.net
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Ramblings:
> Date: Saturday, September 12, 1998 10:21 AM
>
> Dear Friends:
>
> We're coming in on the home stretch. Seth's surgery is Tuesday
so I am
> trying to get all my ducks in a row. I had to take Seth out
of school
last
> Tuesday because he developed an eye infection and we had to race
120
miles
> to St. Charles to see his ophthalmologist. The appointment
was at 4:15
and
> despite delays due to construction on the MLK bridge and a terrible
wreck
> at the St. Charles exit we managed to walk into the doctors office
at
4:17.
> We spent the night with Seth's sister in St. Louis because
Seth had an
> appointment with a child psychologist at Children's Hospital the
next
day.
> Seth and I watched the Cardinals game on TV with Delaney and her
room
> mates. It was great seeing Mark McGuire hit his 62nd home run.
I hope
> Seth will remember it, I know I will.
>
> The visit with the child psychologist was very interesting.
The bottom
> line was that Seth understood the surgery that he was about to have,
he
was
> afraid but trusted us to take care of him. She felt that his
understanding
> was as good as could be expected from a seven year old. I left
her
office
> feeling much better about the up coming surgery.
>
> Seth was unable to return to school on Thursday because of an out
break
of
> a virus that seemed to cause a high fever in several of the students.
I
> hope he escaped exposure, however, his best friend, Joel, didn't.
Isn't
> this always the case.
>
> Friday I went to Seth's class to explain about the surgery and to
answer
> any concerns. I don't believe that I can accurately convey
the
experience
> to you, however, I want to try. The children were wonderful.
They
> listened to my explanation intently, they expressed some concerns,
but
> mostly wanted me to tell Seth that they cared about him and wanted
him to
> come back soon. As I left many children brought up notes that
they had
> written, pencils and bits of things from their desk, things that
must
have
> had some special meaning to each of them, to give to Seth.
It was so
> touching. One little girl, named Lena, seemed to feel especially
tender
> about Seth's upcoming surgery. In her note, she wrote that
she would
teach
> Seth how to tie his shoes when he got back. More than one boy
wrote that
> Seth was his best friend in addition to any well wishes. Being
someone's
> best friend at this age must be very important.
>
> Speaking of best friends, last week Seth's best friend, Joel,
said, "I
> just want you to know, if anything happens I will always remember
you
> fondly." I was a little taken back but, luckily, Seth just
shrugged it
> off.
>
> It is amazing how deeply one person can touch the lives of others.
I
have
> received word that prayers are being said for Seth is almost every
Church
> in Carbondale. We are not alone, there is a whole community
out there
that
> cares for each of us. I have asked members of our church pray
for
several
> of you out there in cyber land. They don't know you personally,
they
only
> know you through me and I know you through the internet. I
do believe
that
> someday this will truly become a world community and it will happen
through
> people like us. As we touch each others lives we create a sense
of
caring
> and of responsibility toward each other. Each of us is like
a stone
thrown
> into a pool of still water. The ripples we cause have far reaching
> effects.
>
> Peace, Dori
>
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Wed, 15 Jul 1998
14:05:38 -0400
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: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Ramblings:
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I hope Seth has a and EvaJesse have a successful operation and speedy
recovery.
They'll be in my thoughts.
I agree, He is very lucky to have a supportive group of friends.
It must
mean a lot to him.
I hope EvaJesse has fun in kindergarton. (I know I did :<)
Happy Belated Birthday Jordan!! I hope the surgery goes successful.
Has anyone heard about Christine or BJ?
Hope all is well-
Andrea
=========================================================================
Date: Wed, 15 Jul 1998
14:09:51 -0400
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: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Pictures and taxes
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My pictures are being developed as I write this. Anyone who has
not yet
received one, please e-mail me (agartner@peganet.com) so I can
be sure to
get one out to you.
Taxs are so aggrevating!!! I had a temporary job working
at the college
bookstore during the first two weeks. I was paid min. wage (5.50)
and only
made about $200 net pay. They took off $30 for taxes!!!!
It may not sound
like much but to me it's a lot. How is someone supposed to making
a living
like that??
-Andrea
=========================================================================
Date: Mon, 14 Sep 1998
15:34:36 -0400
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: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Pictures and taxes
MIME-Version: 1.0
Content-Type: text/plain
Andrea, it gets worse.
> Taxs are so aggrevating!!! I had a temporary job working
at the
> college
> bookstore during the first two weeks. I was paid min. wage
(5.50) and
> only
> made about $200 net pay. They took off $30 for taxes!!!!
It may not
> sound
> like much but to me it's a lot. How is someone supposed to
making a
> living
> like that??
>
> -Andrea
=========================================================================
Date: Mon, 14 Sep 1998
19:43:09 -0400
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: HAROLD E TYRE
<HETSRT@PRODIGY.NET>
Subject: Surgery Best Wishes
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Wishing Seth, EvaJesse and Jordan all a speedy recovery from surgeries
this
week.
Sherry (Carmen Rae's Grandma)
=========================================================================
Date: Mon, 14 Sep 1998
22:29:07 -0700
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: taxes & the white house
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Well..all those complaining about taxes in the States have nothing on
us
in Canada. We pay considerably more in taxes, liquour, gas, sales tax,
income tax, tax on cigarettes(well this is ok and should be higher)
surtax on income tax, tax on just about everything..goods and services.
But on the other hand, we have provincial medicare which means that
we
don't pay for hospital stays, surgeries etc and as we all know that
can
BIG BUCKS>>>>.
So..with every bad thing in life (taxes) there is a good side, I guess?
And speaking of politics in the US...ah...how do I say this....life
in
that big White House of yours hasn't been so hot since the Brits tried
to burn it down in the 1800's!
Good luck to all you American folk as you try to sort that out!
(Don't be fooled...Canadian politicians would do the very same ...that
is assuming that you could find one with a pulse!)
=========================================================================
Date: Mon, 14 Sep 1998
22:01:45 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: WCMurph@AOL.COM
Subject: New Pinkies
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Hello to all,
Sorry I haven't written for a while--I've been very busy with my new
job, new
location, and new house--not to mention working with the new doctors
for my
son. I've been keeping up with the email traffic, though, and
have learned so
much lately about hand surgeries.
Today, our 8 month old, Sammy, had his first surgery to release his
pinkies
(he has "mitten" hands). He did very well through the 5 hours
of surgery.
Sammy now has two big, blue casts from his fingertips to his biceps
that make
him look like a lobster. With those big clubs, someone's going
to have
bruises before it's all over. (He, too, looks like a bat with
his arms back
all the time). We brought him home after spending 12 hours at
the Arkansas
Children Hospital and he sat on my lap smiling and talking to us.
What an
amazing little boy he is! The codeine helps, too. (His
codeine, not ours)
Overall, Sammy is a terrific little boy. He's full of smiles and
with those
big blue eyes, he's quite a flirt with the ladies. Physically
and mentally,
he's meeting all his milestones. It's hard for us to start with
the
surgeries, as he's been so "normal" up to this point. We've been
lucky in
that he hasn't needed his cranial surgery, yet. That should come
around
November (he'll be about 11 months old by then).
Again, I wanted to thank you all for relaying your experiences with
your
children. One of the best pieces of advice was to make a cast
of our son's
hands before they were "fixed." That plaster cast is priceless
to us. You
have armed my wife and me with questions we never knew we needed answers
to.
Bill Murphey
Little Rock, AR
(formerly of Springfield, Virginia)