Lisa,
A Apert chat room would be great but I wouldn't know how to go about
setting
one up so just let me know when & where so I can "chat".
Shirley Tanner
=========================================================================
Date: Mon, 1 Mar 1999
10:58:42 -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: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: update julia
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Sorry that I haven't answered any messages yet; haven't even read them!
Julia is home and off for her 1st dressing change this afternoon.
We know
that surgery was considered a success, and the stay in hospital was
extremely short for her post-op history; real answer to everyone's
prayes!!!
She is recouping nicely, but having some nightmares of the trauma;
hate it
when they begin to have a memory.
Thanks for all of the thoughts, and I will get back to everyone.
Hope everyone is doing well.
Love to all,
Rene and family Happy to have Julia home and done.
=========================================================================
Date: Mon, 1 Mar 1999
15:04:49 EST
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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Discovery Channel Show
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I taped this show on "Restoring Faces: A Plastic Surgery Miracle".
and for
anyone who might be interested in it or missed the showing I would
be happy to
copy my tape and send it their way. [FYI: It does have a segment on
Aperts at
the very begining.] Just write me and send me your address.
Sheila
=========================================================================
Date: Mon, 1 Mar 1999
16:06:58 -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: Trevor &
April Blotske <tblotske@ROF.NET>
Subject: hello listservers!
MIME-Version: 1.0
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Hi, everyone. We're new to the listserve, but enjoying it tremendously
=
already! It is wonderful to daily read such informing and encouraging
=
letters from people who really know what it is all like. we met
brenda, =
george & jonathan in dallas while our daughter was admitted there
and =
they told us all about listserve. thanks brenda!
our daughter, saige, was born 2 months premature on nov. 1, 1998 with
=
aperts. we spent the first three months in three different hospitals
=
doing 3 surgeries including a vp shunt, g-tube, ear tubes, tracheostomy,
=
and eye sutures to keep her eyes from "popping out". We have
now been =
home for almost 5 weeks with home nursing care (which is an absolute
=
god-send). next week, march 10th, saige is having her first head
=
surgery. at this point, it is planned for a forehead advancement,
resew =
her left eye, and possibly remove a lump of fatty tissue from the back
=
of her head. we planned on using dr. fearon and dr. bruce, =
Neurosurgeon, from medical city, dallas. as of today, they are
trying =
to switch to a new neurosurgeon, dr. swift. if anyone has had
any =
experience with either, please send us your feedback. we know
very =
little of dr. swift.
thank you and we hope you all have a marvelous day!
april and trevor
carbondale, co
=20
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<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type><BASE=20
href=3D"file://C:\Program Files\Common Files\Microsoft =
Shared\Stationery\">
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<BODY background=3Dcid:00ef01be6440$966d90c0$LocalHost@default =
bgColor=3D#ffffff>
<DIV><FONT color=3D#800000 face=3DBazooka>Hi, everyone.
We're new =
to the=20
listserve, but enjoying it tremendously already! It is wonderful
=
to daily=20
read such informing and encouraging letters from people who really
know =
what it=20
is all like. we met brenda, george & jonathan in
dallas while =
our=20
daughter was admitted there and they told us all about listserve.
=
thanks=20
brenda!</FONT></DIV>
<DIV><FONT color=3D#800000 face=3DBazooka></FONT> </DIV>
<DIV><FONT color=3D#800000 face=3DBazooka>our daughter, saige,
was born =
2 months=20
premature on nov. 1, 1998 with aperts. we spent the first
three =
months in=20
three different hospitals doing 3 surgeries including a vp shunt, =
g-tube, ear=20
tubes, tracheostomy, and eye sutures to keep her eyes from "popping
=
out". We have now been home for almost 5 weeks with
home =
nursing care=20
(which is an absolute god-send). next week, march 10th, saige
is =
having=20
her first head surgery. at this point, it is planned for
a =
forehead=20
advancement, resew her left eye, and possibly remove a lump of fatty
=
tissue from=20
the back of her head. we planned on using dr. fearon and
dr. =
bruce,=20
Neurosurgeon, from medical city, dallas. as of today, they
are =
trying to=20
switch to a new neurosurgeon, dr. swift. if anyone has had
any =
experience=20
with either, please send us your feedback. we know very little
of =
dr.=20
swift.</FONT></DIV>
<DIV><FONT color=3D#800000 face=3DBazooka></FONT> </DIV>
<DIV><FONT color=3D#800000 face=3DBazooka>thank you and we hope
you all =
have a=20
marvelous day!</FONT></DIV>
<DIV><FONT color=3D#800000 face=3DBazooka>april and trevor</FONT></DIV>
<DIV><FONT color=3D#800000 face=3DBazooka>carbondale, =
co</FONT></DIV> =20
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------=_NextPart_000_00F7_01BE63FD.891B5C60--
=========================================================================
Date: Mon, 1 Mar 1999
21:54:01 -0500
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: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: hello listservers!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello April and Trevor,
Congratulations on your wonderful little girl, Saige. It sounds
like
you have already been through alot. It is a long road, but our
kids
always seem to bounce back so quickly and with the best of spirits.
My son Andrew was born on 9/05/96. I have been with the listserv
since
1/98. I wish I had found them as soon as you have, but it is
better
late than never. Andrew was born on 2 1/2 weeks early, with an
oxygen
bubble for only 24 hours. He had his first Cranial Surgery when
he was
3 months old, which was a Post-exterior release. Technically
they
rebuilt the back of his skull. His frontal advancement was done
when he
was 9 months old and the plates from that were removed a few months
later. He has had two hand surgeries with some more upcoming
to thin
them down and fix his crooked index and thumb. Two eartube surgeries
and one ingrown toenail surgery.
I don't think I have to tell you how wonderful these people are here.
I'm sure you will love it for a really long time.
Good luck with the surgery.
Lynn Thornquist
rlthorn@earthlink.net
=========================================================================
Date: Mon, 1 Mar 1999
23:13:22 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey update
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Zoey's Mom here~
Welcome to the two new families. My name is Christina and my little
angel
with Apert syndrome is named Zoey. She had a little bit of a
rough start
herself. She spent 2 months in the NICU and more than half of
the time was
after her trach was placed because she had a real hard time with it.
She's 2
years old now and is on her next to the last cranial facial surgery
before we
leave her alone for awhile. Check out the clubhouse (www.apert.org/clubhouse)
(I think that's right?) to see a picture of her if you'd like.
To the families with upcoming surgeries, goodluck and Godbless!
After just
recently being through one, I feel for you and hope everything goes
well.
I have a question regarding this last cranial surgery Zoey has had.
Not only
does she not look like the Zoey that I sent into surgery, she's not
acting
like my little Zoey either. I'm worried that I'll never get her
back.
Someone reassure me that their child went through the same thing and
did
eventually get back to their "manic happy" selves. I cried the
morning I came
to the hospital to take her home. She had one eye open, the other
eye was
still swollen and she looked a me and gave a weak, but wholehearted
smile and
I just busted out crying and told her how sorry I was for putting her
through
this. Am I normal? I'm so worried that she'll stop trusting
me because I
keep taking her to the hospital for more "owies". She's been
throwing the
worst temper tantrums since she's been home and I feel like I'm going
crazy
sometimes. I hope this does let up soon.
Well, let me go before this gets too long and everyone falls asleep.
I think
the chat room is a wonderful idea.
Christina
=========================================================================
Date: Tue, 2 Mar 1999
00:04:17 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Zoey update
MIME-Version: 1.0
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Christina,
What you are feeling and thinking are quite normal. Andrew is
now 2 1/2 but his
last Cranial Surgeries were when he was 9 months and 14 months.
At 9 months is
when he had his frontal advancement. I can completely understand
what you are
going through. I remember going into ICU after Andrew got out
of surgery, looking
at him with both eyes swollen shut (he was not awake) and this huge
bandage around
his head. Thinking to myself, how horrible a mother I must be
for putting my
little one through this. Also wishing that it could be me instead
of him. I
cried!!!!! After about 48 hours, the swelling started to go down
some and I
remember saying to myself, "that is not the little boy that I brought
in here".
He too looked much different. I can only imagine what it will
be like when he
finally goes in for his midface advancement. But to tell you
the truth, I knew it
was for the best, but like you, wished for my little baby back the
way he was. I
think I actually felt that way for a couple of weeks. The before
and after
pictures are soooo much different. Everyone commented on how
much different he
looked, so I soon realized it was not just me.
But now when I look at him, he is the most handsome little boy I ever
did see. I
am glad that the surgery was done, because now he will be happier in
the long
run. He will be glad that I did it.....he looks more like a 'typical'
little boy.
Now for the other problem your having. Andrew did not have much
of an attitude
change, but he was only 9 months old when it all happened. What
I think might be
happening is, is that Zoey is going through what we call the "terrible
twos". It
just so happens that she had this surgery at the same time. The
other thing might
be that she does remember a little bit of everything, but not to worry,
it will
pass. Andrew did not like his feet touched after he had his ingrown
toenails
removed, but now it is much better. He will let me clip the toenails
without a
battle. It might be a combination of the two.
Hang in there and everything will return to normal. And remember,
what you are
feeling is just as normal. We have all been there.
Lynn
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Date: Tue, 2 Mar 1999
09:10:49 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: cleft palate
Mime-Version: 1.0
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Hi Stephanie,
I have been wanting to get my Paige in for a sleep study because of
her
breathing at night. When you go in for Caroline's could you let
me know what
they say? I'd be real interested.
Thank you,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
09:14:02 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Introduction
Mime-Version: 1.0
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Hello Gail,
My name is Sheila and I also have 2 children. My son, Colin is
8 years old
and my daugher, Paige is 4. I noticed that you are going into
Boston to have
work done on your daughter....do you live in the Boston area?
I live in
Melrose, Mass. If you need to talk you can write to me on my
e-mail.
Best wishes,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
09:17:23 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: cleft palate
Mime-Version: 1.0
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Hello Beth,
I was just wondering what part of "Snowy Boston" do you live?
I had no idea
that there were so many of us so close together.
Best Wishes,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
09:18:48 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Re: Zoey update
MIME-Version: 1.0
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Christina, Hi! It's Sara Younkin's mom here. I've
been mainly lurking
lately, so I'd like to just say to everyone that we're thinking of
all
those with illnesses and surgeries and praying that everyone does well.
Also, welcome to the new families. This listserve is a wonderful
place to
get info and to just vent sometimes! Sara is almost 3,
and every time she
goes for surgery I get scared she's going to stop trusting me.
(Especially
since every time we go to the hospital or doc's office for ANY reason,
as
soon as we pull into the parking lot she looks up at me and says "That's
OK?" It breaks my heart that I have to reassure my little one
that
there'll be no owies that day!) The nurses and doctors at Childrens
Hospital of Philadelphia have been wonderful about reassuring ME though!
The last time we were at CHOP for a major surgery (Orbital and Forehead
Advancement) I said how afraid I was that she wouldn't trust me because
the
last thing she remember before she woke up in pain was me handing her
over
to them. They assured me t hough that she doesn't associate mommy
and
daddy with the pain. She only understands that we're there comforting
her
and trying to make the pain better. And I've been able to realize
that's
true because it's us that she continues to look to for reassurance
whenever
something's wrong and I figure she wouldn't do that if she didn't trust
us
anymore! Anyway, this has just been a long roundabout way to
tell you that
what you're feeling is normal and to hang on to every single smile
she
gives you. They're what makes this all worthwhile! Take
care! Kelly
=========================================================================
Date: Tue, 2 Mar 1999
09:47:12 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Introduction
Mime-Version: 1.0
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Hello Mary,
My name is Sheila and my daughter Paige has Apert's. I was just
worndering
what part of Boston you live in? Let me know I live in Melrose.
About
15mins. from the Boston area.
Love,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
10:02:03 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: AOL CHAT ROOM?
Mime-Version: 1.0
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Hi Cristy and Carlee,
Just want to wish you the best for your surgery. Our prayers will
be with
you!!!!!
Love, Sheila [Paige's Mom}
=========================================================================
Date: Tue, 2 Mar 1999
10:15:57 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Welcome April and Saige
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Hello April and Saige,
Welcome to the listserv. I'm fairly new to the listserv as well.
I have a
son Colin who is 8 years old and a daughter Paige who is 4 years old.
Paige
is the one with Apert's, so we have alot in common. Both of us
have
daughter's with Apert's and they are both 4 years old. If you
ever want to
talk you can just write to my e-mail address or the listserv.
It's good to
have you on the listserv. I hope it give you as much as it has given
me.
Best wishes,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
10:19:03 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: hello listservers!
Mime-Version: 1.0
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I'm sorry April I read Saige's birthdate wrong. I can't believe
that you have
gone through so much in such a short period of time. Although
it's been
awhile for me I guess that how busy we were at first...but, it does
settle
down a bit when they get older.
Best of luck,
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
07:54:38 -0800
Reply-To: Information exchange and Internet
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From: jeany pak <shuijeanpak@YAHOO.COM>
Subject: Re: Discovery Channel Show
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi'Shelia,
I'm very interested in seeing the apert's syndrome on
tape my name is Jeanie Pak My address is 124 AMELIA
STREET THUNDER BAY,ONTARIO CANADA P7E 4A2.If you don't minda making
a
copy for me.
Jeanie
---Sheila MacDonald <SMacdo1030@AOL.COM> wrote:
>
> I taped this show on "Restoring Faces: A Plastic Surgery Miracle".
and for
> anyone who might be interested in it or missed the showing I would
be happy to
> copy my tape and send it their way. [FYI: It does have a segment
on
Aperts at
> the very begining.] Just write me and send me your address.
>
> Sheila
>
_________________________________________________________
DO YOU YAHOO!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Tue, 2 Mar 1999
08:07:40 -0800
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Re: Discovery Channel Show
MIME-Version: 1.0
Content-Type: text/plain
Hi Sheila,
I would love a copy of the video.
Laura Pulido
392 S. Woods Avenue
Los Angeles, CA 90022
Please give me your address so I can forward some money to you.
I would
like to cover the cost of a blank video plus shipping at the very least.
Would $5 be enough?
FYI: My daughter is on Teeter's Page. Her name is Martha Palacio.
> ----------
> From: Sheila MacDonald[SMTP:SMacdo1030@AOL.COM]
> Reply To: Information exchange and Internet
safe haven for Apert
> Syndrome
and other craniofacial anomalies
> Sent: Monday, March
01, 1999 12:04 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Discovery Channel Show
>
> I taped this show on "Restoring Faces: A Plastic Surgery Miracle".
and
> for
> anyone who might be interested in it or missed the showing I would
be
> happy to
> copy my tape and send it their way. [FYI: It does have a segment
on Aperts
> at
> the very begining.] Just write me and send me your address.
>
> Sheila
>
=========================================================================
Date: Tue, 2 Mar 1999
14:17:22 EST
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Introduction
Mime-Version: 1.0
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Sheila,
After reading some more of your emails, I realize that are a lot of
people on
this listserve that live in Massachusetts; maybe we could try to get
all of us
together someday!
Gail
=========================================================================
Date: Tue, 2 Mar 1999
19:50:27 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Let's get together Mass!!!!
Mime-Version: 1.0
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Hi Gail,
I think that would be a great idea. It does seem like there is
quite a few of
use that live in Mass. If there is anyone who is reading this
and live in the
area of Boston that would like to get together please let me know.
Love,
Sheila
=========================================================================
Date: Wed, 3 Mar 1999
14:36:26 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Trust (was Zoey update)
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
For the first couple of weeks of this first term Amy's class was doing a booklet about themselves. Under the "person I trust" section she had written "mum". I'm sure you will understand how I felt.
Children are so very forgiving, and I am sure they have enough pre-op clinics to know that it is not us that "does it to them". I was also very reassured to read what one of our adults was saying about not remembering the early surgeries - a good reason to have it done while they are young.
Cheers
Ann
NZ
PS Kelly, I really can't believe you have a hospital called CHOP!!!
>The last time we were at CHOP
=========================================================================
Date: Tue, 2 Mar 1999
20:55:38 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Discovery Channel Show
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0059_01BE64EF.0669A220"
This is a multi-part message in MIME format.
------=_NextPart_000_0059_01BE64EF.0669A220
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Who out there can get a tape of this? I must have deleted the
message =
any way I can't find it. =20
=20
I would like a copy of it. My sister saw it on the Discovery
Channel on =
her Satellite Dish and did not think that I could get it where I lived
=
so she did not tell me about it. She said it was very good and
she is =
very close to my daughter.
=20
Whoever can get me a copy I sure would appreciate it.
Again let me know how to go about this. =20
Thank you
Deb Picht
Marshall, MN
Lisa is 9 yrs old with Aperts. (Daughter)
------=_NextPart_000_0059_01BE64EF.0669A220
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Who out there can get a tape
of =
this? I=20
must have deleted the message any way I can't find it. =
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I would like a copy of it.
My =
sister saw=20
it on the Discovery Channel on her Satellite Dish and did not think
that =
I could=20
get it where I lived so she did not tell me about it. She
said it =
was very=20
good and she is very close to my daughter.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Whoever can get me a copy
I sure =
would=20
appreciate it.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Again let me know how to
go about =
this. =20
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Thank you</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Deb Picht</FONT></DIV>
<DIV><FONT size=3D2>Marshall, MN</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Lisa is 9 yrs old with Aperts.=20
(Daughter)</FONT></DIV></BODY></HTML>
------=_NextPart_000_0059_01BE64EF.0669A220--
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Date: Tue, 2 Mar 1999
21:58:47 -0500
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From: foster <foster@ICONTECH.COM>
Subject: Billy's Home
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I wanted to tell everyone that Billy is back home and with the help
of the
Lord he will stay here. He is doing pretty good. He is still very weak
and
needs time to get back to his old self. During his hospital stay we
were
able to get a second and third opinion about having to get a shunt
and they
agree that it is not needed. He will be seen again in six months.
Thanks again for all of the support and prayers.
I have not had a chance to read all the back mail so I am still clue
less
about what is going on. Hopefully I will be able to catch up. Hope
everyone
is well.
Karen(PA)
=========================================================================
Date: Tue, 2 Mar 1999
22:12:32 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Let's get together Mass!!!!
MIME-Version: 1.0
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Hi Shiela,
My name is Lynn and I too live in Mass. I would love to get together,
but I do
believe that, that happens anyways. I have been told that once
a year everyone in
Mass. gets together in June. But we could always do it on our
own if you want.
My son, Andrew, is 2 1/2 years old. Gail and I have already been
talking about
that back and forth. E-mail me personally and we can discuss
it.
Lynn
rlthorn@earthlink.net
=========================================================================
Date: Tue, 2 Mar 1999
22:43:59 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Discovery Channel Show
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hello Deb,
My name is Sheila and I have taped the show on the Discovery Channel.
I have
been getting alot of request to send out the tapes. I would be
happy to send
a copy your way just give me your mailing address.
Sheila
=========================================================================
Date: Tue, 2 Mar 1999
22:50:30 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Trust (was Zoey update)
Mime-Version: 1.0
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Hello, Zoey's Mom here. Thank you Lynn, Kelly, and Ann for telling
me your
story. I do feel a lot better. It's so hard sometimes,
but once I've had
some time, I start feeling better. The light at the end of the
tunnel is dim,
but atleast it's there. Thank you.
Hooray for Billy being home, it's truly wonderful taking the little
ones home
again!
Very tired...goodnight all!
Christina
S.A. TX
=========================================================================
Date: Tue, 2 Mar 1999
22:24:48 -0800
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Everybody!
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Hi Everybody, Maxine here, Just wanted to say to all the new people,
Hi and
welcome to the Listsever. My name is Maxine and Iam 44 years old and
I have
Aperts. So if there's any question's that you want to ask just ask.
I'll be
happy to answer them. Iam married and have a healthy 15 year
old. I want to
say to some of the mothers who's babys have had surgery and their worried
that they will remember. I have had several hand surgery's when I was
little. My Mom said I had 3 and I can't remember any of them.My mom
also
said that when I was at Shriners Hospital in San Francisco, Calif.
(back in
1959) my parents had to leave me there and couldn't see me for at least
a
month. Iam not sure why but I have no bad memorys of that time. My
mom says
that one time when they came to visit me I didn't even recognize them
but
then in alittle while I would be back to myself. I only remember
one time
and thats when they (the nurses) cut my hair. They put a bowl on my
head and
cut around it. Thats the only bad memory that I had and also the look
that
my mom had when she saw my hair cut. They didn't even ask her if they
could
cut my hair. They cut it because my hair was long and when they washed
it,
it would get really matted with tangles and I would cry. When I had
my
surgerys at Shriners back in 1950's they wouldn't let parents have
any say
in what they could do to your child or that the parents could stay
with the
kids. I spent alot of times in the hospital but I don't remember a
whole lot
about missing my mom and dad. So it's good that the little ones are
having
the surgerys now because they won't remember later. I know its hard
on the
parents because it was hard on my parents (and my heart goes out to
you
folks) even when I had my facial surgery at 21 it was hard on them.
But we
are a tough group. and I know that when they get older they will
be glad
you did it when you did, because Iam glad my parents did.I just wish
the
doctors had the know how to do the facial surgery back when I was little.
Because then I wouldn't have to go through the pain of being made fun
of in
my childhood years and in my high school years.Well it looks like I
wrote my
life story again. To all the little ones who are having surgery you
are in
my prayers and to all who have come home like little Zoey and little
Billy
did they ever find out what was wrong with him?.So glad to hear you
all are
home. Well I better close. Again welcome to all the new Mom's
and Dads and
Kids. I hope you find this place a place that will lift you up and
help you
too. Happiness always, Maxine or Max in Sunny Modesto, Calif.
=========================================================================
Date: Wed, 3 Mar 1999
13:24:28 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Update
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We sure hope thta Billy gets to come home for his birthday.
We are praying for him.
The Bradley's
Algonquin, IL
=========================================================================
Date: Wed, 3 Mar 1999
13:37:09 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Lynn [A Mass. get together]
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Date: Wed, 3 Mar 1999 13:32:58 EST
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X-Mailer: AOL 3.0 for Windows 95 sub 18
Hi Lynn,
I would love to get together sometime. I don't know what's good
for you but,
I can get together anytime after the kids get out of school or on the
weekends. The kids are also having a school vacation comming
up in
April...let me know what you think.
Sheila
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=========================================================================
Date: Wed, 3 Mar 1999
13:42:46 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Lynn {a Mass get together]
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Hi Lynn,
I would love to get together anytime that is good with you. The
best time I
can think of would be on April Vacation. What do you think?
Love,
Sheila
=========================================================================
Date: Wed, 3 Mar 1999
16:48:39 EST
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From: ETolson643@AOL.COM
Subject: Re: cleft palate
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Sheila;
I live in Holbrook, which is about 20 minutes south of Boston.
I live about
10 minutes from the South Shore Plaza...everyone seems to know that
landmark!
Beth Tolson
=========================================================================
Date: Wed, 3 Mar 1999
17:12:12 EST
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From: BBarn60368@AOL.COM
Subject: Re: Billy's Home
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Dear Karen:
So glad to hear your good news. Give Billy a hug for me and know
you both
continue to be in my prayers.
Much love,
Alice in Orlando, Florida
=========================================================================
Date: Wed, 3 Mar 1999
19:27:59 EST
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From: GSieb91515@AOL.COM
Subject: Re: hello listservers!
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April-
Glad to see your introduction. You will get so much information
and support
from this group or rather should I say our extended family. It's
great to
also hear that you've been able stay home for awhile. I don't
know about Dr.
Swift. I have heard his name. We used Dr. Shapiro and trust
him completely.
I don't know if he only works with Dr. Salyer or if he teams up with
Dr.
Fearon also. Let me know if you need any phone numbers or more
info. on him.
Keep in touch and we will continue to pray for little Saige.
Brenda Siebert
Houston
=========================================================================
Date: Wed, 3 Mar 1999
20:16:01 EST
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Lynn {a Mass get together]
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Sheila & Lynn,
Maybe I could join you all during a day during April school vacation.
It
would be fun to meet the members from Mass!
Gail
=========================================================================
Date: Wed, 3 Mar 1999
20:17:03 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: cleft palate
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Hi Beth,
If we Have a get together would you be interested in comming?I live
about 15
minutes north of Boston. I once traveled to springfield for an
Apert out door
picnic [appx. 2hrs and15min.] so I don't mind travel to much.
There is a
women that I met in Fanuel Hall last summer that has a daughter with
apert
syndrome, she lives in Rhode Island and I've been keeping in touch
with her.
I'm sure she would be interested in a get together as well.
Write me and let me know,
Sheila
=========================================================================
Date: Wed, 3 Mar 1999
21:38:35 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Hi Everybody!
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Maxine,
Please feel free to tell your life story. I really enjoy reading
what you have
to say. I think your little story helped us all. I worry
about Andrew
remembering the surgeries and blaming me for his pain and hating certain
things,
but it is nice to know that you don't remember a single thing.
I'm glad that
things have changed, and parents have more say and are aloud to stay
with their
children. When Andrew goes into the hospital, I am asking question
after
question. They are not aloud to touch him without my knowledge
of what it is.
I sware sometimes, that I could do the IV drip myself (of course I
never would).
Anyways, thank you again for the story, and feel free to tell another
one
anytime.
Lynn
=========================================================================
Date: Wed, 3 Mar 1999
22:40:11 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: cleft palate
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Beth,
Not ALL of us know where the South Shore Plaza is, and I have been living
in
Mass. all my life. I also work in Boston. I guess I just
don't get out much.
Maybe I should put it this way......I had never seen a 'bum' until
I was 17 years
old and my husband (then boyfriend) took me to Fanuiel Hall.
I was handing out
money to any 'bum' that asked. Finally my husband realized what
I was doing and
made me stop. Now like the rest of the people in Boston, I am
immune to it. I
know that sounds horrible, but it happens. I have actually seen
people asking
for spare change, and then get into a nicer car than myself.
Not that that
happens often, but too many times that I have seen.
I would love to see both you and Tim again. It has been a long
time, and Tim is
a very nice kid.
Let me know when is good for you. I think we should all meet at someone's house.
Lynn
=========================================================================
Date: Wed, 3 Mar 1999
22:45:17 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Lynn {a Mass get together]
MIME-Version: 1.0
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Everyone in Mass.
As you all can tell from my e-mail to Beth, I am not very good with
towns or
where they are. So far we have me in Hopedale, Beth by the South
Shore, Gail
in Tewksbury, Sheila (not sure yet), and someone in RI. Please
help me out
here and tell me who is in the middle. I don't mind traveling
either. We
should probably do this at someone's house, since it is getting large.
I
will ask my sister-in-law how the chat rooms work and maybe we could
meet in
a private one some time soon. I will get back to you.
Lynn
=========================================================================
Date: Wed, 3 Mar 1999
22:53:02 EST
Reply-To: Information exchange and Internet
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: AOL CHATROOM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi,
How about any listserv. members that would like to get in on a chat
room on
AOL, go on this Sunday (March 7th) at 5:00 p.m. Pacific time,
8:00 p.m.
Eastern time. Then we can discuss if this was a good time for
everyone or to
change it and then we can try to stick with that decision everyweek.
Even if
some of us can't come every week we'll know to check the week we can.
Who ever is interested go to People Connection on the main menu and
then go to
Chat room, and then go to Private Member Chat and type in Apert.
Is this ok with all of the AOL members?
Lisa Guyette
PS If I don't happen to be there it's just because I have a crummy computer
and always get knocked off, but I'll start early.
=========================================================================
Date: Wed, 3 Mar 1999
20:31:30 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Lynn {a Mass get together]
Mime-Version: 1.0
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Gail,
The more the merrier...if you know of anyone else who lives in the area
that
would be interested invite them as well.
Sheila
=========================================================================
Date: Wed, 3 Mar 1999
23:04:22 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Discovery Channel
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I thought the Discovery show was wonderful. While I probably should
of been
freaked out with all the upcoming surgeries and how they are performed,
I
found a lot of releif from them. I especially found
touching when the
Crozen's boy Rafael mother said she knows he looks better but
missed his old
face. I'm so attached to my Samantha's looks in Four months that
I know I'll
feel the same. Today we met with a friend that had a baby girl
the day before
Samantha. I wondered a little how I would feel comparing them
for the first
time. Yes, her head was a lot smaller, but actually everything
was a lot
smaller. Samantha is 12 lb.s 8 oz and her baby is 9, she is shorter
too.
And I thought her daughter was cute cut I think mine is also.
It's who she
is. But I also know what I think won't matter when she
starts school and
wants to look as close to the others as she can.
We havent' been given a two month break from specialists.
THen we will have
another MRI and see if we should start the back of the head surgery.
If not
then we will meet with the plastic surgeons about her hands and midface
and
get some of that going. I'm cherishing these next two months.
She already
is screaming when doctors and technicians touch her. She has
from the day she
was born, and it's now getting worse. And she has a good
set of lungs.
My doctors is concerned about how she twists her neck to the side,
He thinks
it has gotten worse and will also hurt her vision. He says he
does understand
about her probably clearing her airways, but he says it's looking stiff.
I
think it is getting worse too, but I'm stopped alot in public about
it. I
straighten her and she goes right back. After three times or
so she is mad.
Well just wanted to check in. I read these messages every night
and it really
helps.
Lisa Guyette/Ventura California
Mother of Samantha four months
=========================================================================
Date: Thu, 4 Mar 1999
02:09:26 EST
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From: KTGrace1@AOL.COM
Subject: it has been a long time
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It has been a long time since I have sat down at this computer
to write to
you all, I read as often as I can. I am the grandmother
of KateyGrace. She
is 3 1/2 yrs. old. She has had two cranial surgeries and two
each on her
hands and feet. In addition, tubes have been put in her ears
twice. Right
now we are fighting a cold. On Oct. 1st Katey's family was blessed
with
another beautiful little girl. Kassidy Alyse. She is very
healthy and
doesn't have aperts like her big sissy. Although the doctors
informed my
daughter that she was no more at risk than anyone else of having aperts,
and
from all the ultrasound appeared uneffected we all held our breathe.
When
asked if she would like to do an amnio she refused because she and
her husband
have always looked at Katey as a blessing. They feel all children
with
special needs are truly special and because of that God must think
they too
are special because he intrusted Katey to them. He has said so
often since
the day she was born, what if she had been born to parents who couldn't
or
wouldn't except a child with differences or without means to give her
the best
medical care avalable........So they indeed are blessed. I must
tell this
story, yesterday, my daughter and I had the day off together and so
did daddy.
Well, we had planned to take the girls shopping but when I went over
for
breakfast in the morning Katey announced that we could take Kassidy
but she
was staying home and help daddy build his shed. She then when
into her room,
got on her Home Depot apron and gathered all her tools and put them
in her
tool box that she had made at the Home Depot and came out and told
her daddy
that she was ready to go to work. I had brought her some petunias
to plant
and her on cultivator and believe me when I tell you, they had a big
day.
Katey has amazed us all with all that she has accomplished. She
doesn't know
she is different and we have never treated her so. She has been
challenged
every step of the way. I can't isn't in her vocabulary.
Even though her
little fingers are misformed and have no knuckles accept at the hand
junctions
she manages to accomplish things I never thought possible just simply
because
of the challenge. When she went through her occupational
therapy and
phyiscal therapy they released her after 3 sessions because she
was able to
do everything a child her age should be doing and beyond. Her
only area of
weakness was doing small or tiny tasks with her hands. The dexderity
was
difficult but even those things she has accomplished with time and
the
wonderdful teaching of her parents and other family members.
These children
are special and only in time do we have the privalege to see just how
much.
To you parents and families just beginning down this road of uncertainties,
reachout. We had not found the list until after Katey's surgeries
to her
hand, feet and head. We knew very little except that we
trusted our doctors
and our God to bring us through. Next Monday, we will meet with
the
craniofacial team as they are monitoring Katey's progress as they begin
to
plan for her next surgeries. Eveytime we hold our breath cause
we don't know
when that will be. We have found a new aperts family in this
area, Central
Florida and are planning to meet with them. This family has always
traveled
to Texas for surgery but use our team for followup and in between.
If you're
new to this list reachout as I said, find a partner online if you don't
have
anyone close. Trust me we are all looking for answers and hope.......
Love to you All
Katey's Granny
=========================================================================
Date: Thu, 4 Mar 1999
00:59:20 -0600
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Welcome
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello Again...
Just wanted to say HI to the new commers... I am
Mark, a 35 year old =
male with aperts, as of yet I am not married, or have kids.
Feel free to write with any questions that you may have, I don't
know =
anything about raising children, but would give what it's like
from the =
point of view of one whom has Aperts, just like other adults on here.
Take Care,
Mark
=========================================================================
Date: Thu, 4 Mar 1999
00:59:25 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Hi Everybody!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello Lynn
Just wanted to drop a line, like Maxine, I
am same in having no bad =
memories of my surgeries, in my case, most of them took place when
I was =
3 and four years old. The ONLY thing I do remember..is I was in a large
=
room..several other patients with me, and a glimmer of rememberance
of =
how the room was set up. I love my parents very much, and ALWAYS have,
=
and always will.
Take Care..
Mark
----------
From: Rich Thornquist
Sent: Wednesday, March 03, 1999 8:38 PM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Hi Everybody!
Maxine,
Please feel free to tell your life story. I really enjoy reading
what =
you have
to say. I think your little story helped us all. I worry
about Andrew
remembering the surgeries and blaming me for his pain and hating certain
=
things,
but it is nice to know that you don't remember a single thing.
I'm glad =
that
things have changed, and parents have more say and are aloud to stay
=
with their
children. When Andrew goes into the hospital, I am asking question
=
after
question. They are not aloud to touch him without my knowledge
of what =
it is.
I sware sometimes, that I could do the IV drip myself (of course I
never =
would).
Anyways, thank you again for the story, and feel free to tell another
=
one
anytime.
Lynn
=========================================================================
Date: Thu, 4 Mar 1999
01:11:51 -0600
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello..
=20
Question...Am I the only one thats NOT a member
of AOL? I'm =
interested in the chat room thing, but would only be available on =
weekends, as I work evenings during the week. Please don't base any
=
decisions on me not being on aol.
Mark
----------
From: Lisa Guyette
Sent: Wednesday, March 03, 1999 9:53 PM
To: APERT@LISTSERV.AOL.COM
Subject: AOL CHATROOM
Hi,
How about any listserv. members that would like to get in on a chat
room =
on
AOL, go on this Sunday (March 7th) at 5:00 p.m. Pacific time,
8:00 p.m.
Eastern time. Then we can discuss if this was a good time for
everyone =
or to
change it and then we can try to stick with that decision everyweek.
=
Even if
some of us can't come every week we'll know to check the week we can.
Who ever is interested go to People Connection on the main menu and
then =
go to
Chat room, and then go to Private Member Chat and type in Apert.
Is this ok with all of the AOL members?
Lisa Guyette
PS If I don't happen to be there it's just because I have a crummy =
computer
and always get knocked off, but I'll start early.
=========================================================================
Date: Thu, 4 Mar 1999
08:28:44 -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: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
HI gang,
I have noticed that many people are not Aol. soooooooo,
what I have to
say is a possible alternative. What I am about to give you is
something
that my friend uses but I have yet to download this my self.
I am going to
send you the link for Icq. Chatrooms can be created but with
more
flexiblility.
Http://www.mirabilis.com
While I am here, I would like to welcome all the new members.
It is so
nice to see this website growing. For those of you who do not
know me. My
name is Judy Amerman and My son Nick has apert syndrome. He will
soon be 9
years old. We live in Morris,Ill. roughly one hour sw of
chicago.
Nick has had 13-14 surgeries to date. Nick's pride and joy is
the bike he
got for his birthday last may and he loves to swim in our pool.
Judy
----------
From: MARK E. DUBAS <Murphy@PLATTEVALLEY.NET>
To: APERT@LISTSERV.AOL.COM
Subject: Re: AOL CHATROOM
Date: Thursday, March 04, 1999 1:11 AM
Hello..
Question...Am I the only one thats NOT a member of
AOL? I'm interested
in the chat room thing, but would only be available on weekends, as
I work
evenings during the week. Please don't base any decisions on me not
being
on aol.
Mark
----------
From: Lisa Guyette
Sent: Wednesday, March 03, 1999 9:53 PM
To: APERT@LISTSERV.AOL.COM
Subject: AOL CHATROOM
Hi,
How about any listserv. members that would like to get in on a chat
room on
AOL, go on this Sunday (March 7th) at 5:00 p.m. Pacific time,
8:00 p.m.
Eastern time. Then we can discuss if this was a good time for
everyone or
to
change it and then we can try to stick with that decision everyweek.
Even
if
some of us can't come every week we'll know to check the week we can.
Who ever is interested go to People Connection on the main menu and
then go
to
Chat room, and then go to Private Member Chat and type in Apert.
Is this ok with all of the AOL members?
Lisa Guyette
PS If I don't happen to be there it's just because I have a crummy computer
and always get knocked off, but I'll start early.
----------
=========================================================================
Date: Thu, 4 Mar 1999
09:37:25 -0500
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: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain
And for your information, 44 of our 166 listserv subscribers are on AOL.
> -----Original Message-----
> From: Judy Amerman [SMTP:jamerman@UTI.COM]
> Sent: Thursday, March 04, 1999 9:29 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
>
> HI gang,
>
> I have noticed that many people are not Aol. soooooooo,
what I have
> to
> say is a possible alternative. What I am about to give you
is
> something
> that my friend uses but I have yet to download this my self.
I am
> going to
> send you the link for Icq. Chatrooms can be created but with
more
> flexiblility.
>
> Http://www.mirabilis.com
>
> While I am here, I would like to welcome all the new members.
It is
> so
> nice to see this website growing. For those of you who do not
know
> me. My
> name is Judy Amerman and My son Nick has apert syndrome. He
will soon
> be 9
> years old. We live in Morris,Ill. roughly one hour sw
of chicago.
>
> Nick has had 13-14 surgeries to date. Nick's pride and joy
is the
> bike he
> got for his birthday last may and he loves to swim in our pool.
>
> Judy
>
>
>
> ----------
> From: MARK E. DUBAS <Murphy@PLATTEVALLEY.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
> Date: Thursday, March 04, 1999 1:11 AM
>
> Hello..
>
> Question...Am I the only one thats NOT a
member of AOL? I'm
> interested
> in the chat room thing, but would only be available on weekends,
as I
> work
> evenings during the week. Please don't base any decisions on me not
> being
> on aol.
> Mark
>
> ----------
> From: Lisa Guyette
> Sent: Wednesday, March 03, 1999 9:53 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: AOL CHATROOM
>
> Hi,
>
> How about any listserv. members that would like to get in on a chat
> room on
> AOL, go on this Sunday (March 7th) at 5:00 p.m. Pacific time,
8:00
> p.m.
> Eastern time. Then we can discuss if this was a good time for
> everyone or
> to
> change it and then we can try to stick with that decision everyweek.
> Even
> if
> some of us can't come every week we'll know to check the week we
can.
>
> Who ever is interested go to People Connection on the main menu and
> then go
> to
> Chat room, and then go to Private Member Chat and type in Apert.
>
> Is this ok with all of the AOL members?
>
> Lisa Guyette
>
> PS If I don't happen to be there it's just because I have a crummy
> computer
> and always get knocked off, but I'll start early.
> ----------
=========================================================================
Date: Thu, 4 Mar 1999
10:03:24 -0500
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: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Mark,
You are not the only one that is NOT on AOL. I use earthlink.
I would also love to join the chat room, but was wondering if I could even
though I'm not on AOL. I think I will try and find out. Evenings
are bad for me as well. I'm
normally putting Andrew to bed at about that time.
Lynn
=========================================================================
Date: Thu, 4 Mar 1999
10:24:35 -0500
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: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi everybody,
I was just talking with my sister-in-law and she mentioned that you
could include
more people (people without AOL) if everyone tapped into ICQ and we
got a chat
room through there. I forgot to ask her where to get ICQ, but
I think my husband
knows. Mark, that way you and I could get in on it. She
also said that the
Microsoft chat rooms can include anyone. She is not sure how
many people can fit
into a chat room on ICQ, but she believes that there isn't a limit
with
Microsoft. How would that be for everyone?
Lynn
=========================================================================
Date: Thu, 4 Mar 1999
10:54:01 -0500
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: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain
AOL people can also use non-AOL chatrooms through the WWW interface
on
AOL. Another trick that a lot of AOL people might not know is
this:
After you sign on through America Online, you can minimize the AOL
software and use any Internet software that you choose - Netscape,
ICQ,
Explorer, anything that is available. The software does not care
how
you are connected to the Internet, it just knows you are connected.
---Don
> -----Original Message-----
> From: Rich Thornquist [SMTP:rlthorn@EARTHLINK.NET]
> Sent: Thursday, March 04, 1999 10:25 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
>
> Hi everybody,
>
> I was just talking with my sister-in-law and she mentioned that you
> could include
> more people (people without AOL) if everyone tapped into ICQ and
we
> got a chat
> room through there. I forgot to ask her where to get ICQ, but
I think
> my husband
> knows. Mark, that way you and I could get in on it. She
also said
> that the
> Microsoft chat rooms can include anyone. She is not sure how
many
> people can fit
> into a chat room on ICQ, but she believes that there isn't a limit
> with
> Microsoft. How would that be for everyone?
>
> Lynn
=========================================================================
Date: Thu, 4 Mar 1999
11:48:38 -0500
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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Boy am I confused!!!!!! I would love to chat; however, I am not
on AOL and
do not understand all the minimizing tricks, downloading, etc.
??????????
We used to get EMAILS about chatting in the past; I think with widesmiles?
I tried that a couple of times, but it never worked. Does anyone
know what
I am talking about? Anyway, I will stayed tuned to figure this
stuff out.
Robin Hill
P.S. I just want to welcome all the new members. We have
been a little
out of touch lately. We are Mike and Robin Hill of Newnan, Georgia.
Our
precious angel, Carmen Rae, has apert syndrome.(You can see her Christmas
photo shoot in the clubhouse) She is 13 1/2 months old and has
had 4
surgeries (shunt, cranial, and two hand). She is currently crawling
and
pulling up on furniture. She wants to walk so bad she can't stand
it!!!!!
(not pun intended! HAHA) Mom is not sure SHE is ready for walking,
though!
I still have to get used to the little spills she takes when
trying to
walk!!!!!! Well, just thought I would introduce ourselves!
This
listserver has been such a blessing!
----------
> From: Don Sears <dsears@SCRS.STATE.SC.US>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
> Date: Thursday, March 04, 1999 10:54 AM
>
> AOL people can also use non-AOL chatrooms through the WWW interface
on
> AOL. Another trick that a lot of AOL people might not know
is this:
> After you sign on through America Online, you can minimize the AOL
> software and use any Internet software that you choose - Netscape,
ICQ,
> Explorer, anything that is available. The software does not
care how
> you are connected to the Internet, it just knows you are connected.
> ---Don
>
> > -----Original Message-----
> > From: Rich Thornquist [SMTP:rlthorn@EARTHLINK.NET]
> > Sent: Thursday, March 04, 1999 10:25 AM
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Re: AOL CHATROOM
> >
> > Hi everybody,
> >
> > I was just talking with my sister-in-law and she mentioned that
you
> > could include
> > more people (people without AOL) if everyone tapped into ICQ and
we
> > got a chat
> > room through there. I forgot to ask her where to get ICQ,
but I think
> > my husband
> > knows. Mark, that way you and I could get in on it.
She also said
> > that the
> > Microsoft chat rooms can include anyone. She is not sure
how many
> > people can fit
> > into a chat room on ICQ, but she believes that there isn't a limit
> > with
> > Microsoft. How would that be for everyone?
> >
> > Lynn
=========================================================================
Date: Thu, 4 Mar 1999
09:57:51 -0700
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: baconsmith <bluenose@TELUSPLANET.NET>
Subject: MIRC Chat
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi folks. The crouzon list set up a chat room on IRC which
also can be
downloaded free of charge off the internet. Does anyone have
info on it?
Widesmiles has a chatroom on IRC that meets regularly four or
five times a
week.
I don't know if aol users can join IRC not sure how that works.
Also aol has instant Messenger IM which can be downloaded
for free by
anyone aol or not --- i have AOL IM and that way
you can talk to anyone
else who has it anytime you see them online.
So there are two other options.
I'll try and dig up this info if anyone wants it.
Pat
ps Karen, got your note about hte tape ---- can anyone else help
Karen get
a hold of that discovery show? I have one copy but I hear that
the images
didn't come out too well, so I hestitate to share it because it seems
to be
such a rotton copy. Karen is in PA --- anyone close by there
that taped the
show --- how about you Cari? Just asking.
=========================================================================
Date: Thu, 4 Mar 1999
10:08:20 -0700
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: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: MIRC Chat
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi, you can go to
http://www.mirc.co.uk/
for info and to download this program
I'm not too techie so I cannot hep with the ins and outs, but I know
once
on, this is really easy to use. I'm using an old version -- about
two years
old so mine doesn't have all the bells and whistles, but it works
to chat.
Here's the AOL Instant Messenger site
http://www.aol.com/aim/home.html
Again, you do NOT have to be on AOL to have Instant Messenger.
Pat (mommy to Peach)
=========================================================================
Date: Thu, 4 Mar 1999
09:29:31 -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: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
HI I will be there =) Looking forward to it!!!
Dawn
=========================================================================
Date: Thu, 4 Mar 1999
14:19:47 EST
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: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: cleft palate
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Shelia, you live in Boston. I used to live near by in New Hampshire.
Boston
is were I grew up literally. I had all of my surgeries there
and spent a good
portion of my life there. I now live in Florida, the land of
sun shine. I
was born with a cleft palate and I can answer questions about that
aspect. E-
mail me privately if you want to do it. Mary unilateral cleft
palate.
=========================================================================
Date: Thu, 4 Mar 1999
13:37:12 -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: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello...
ICQ would fit perfectly...as I already have it downloaded.
I know =
that multiple people can talk in same icq "room".Also have aol messenger
=
downloaded as well..
Mark
----------
From: Don Sears
Sent: Thursday, March 04, 1999 9:54 AM
To: APERT@LISTSERV.AOL.COM
Subject: Re: AOL CHATROOM
AOL people can also use non-AOL chatrooms through the WWW interface
on
AOL. Another trick that a lot of AOL people might not know is
this:
After you sign on through America Online, you can minimize the AOL
software and use any Internet software that you choose - Netscape,
ICQ,
Explorer, anything that is available. The software does not care
how
you are connected to the Internet, it just knows you are connected.
---Don
> -----Original Message-----
> From: Rich Thornquist [SMTP:rlthorn@EARTHLINK.NET]
> Sent: Thursday, March 04, 1999 10:25 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
>
> Hi everybody,
>
> I was just talking with my sister-in-law and she mentioned that you
> could include
> more people (people without AOL) if everyone tapped into ICQ and
we
> got a chat
> room through there. I forgot to ask her where to get ICQ, but
I think
> my husband
> knows. Mark, that way you and I could get in on it. She
also said
> that the
> Microsoft chat rooms can include anyone. She is not sure how
many
> people can fit
> into a chat room on ICQ, but she believes that there isn't a limit
> with
> Microsoft. How would that be for everyone?
>
> Lynn
=========================================================================
Date: Thu, 4 Mar 1999
17:07:41 EST
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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: AOL CHATROOM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
THIS SOUNDS GOOD TO ME ....I'LL BE THERE
SHEILA
=========================================================================
Date: Thu, 4 Mar 1999
14:06:04 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi everyone,
I am not on AOL either. I would love to go into a chatroom with
Aperts
people as I am a frequent chatroom attendee. Please let me know what
you
decide. I would only be able to go on the weekends though, because
I
have homework during the week
Kelly
=========================================================================
Date: Thu, 4 Mar 1999
17:10:26 EST
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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: AOL CHATROOM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I was just wondering if I am already on AOL do I still have to use this
service to get in to the Chat room?
Sheila
=========================================================================
Date: Thu, 4 Mar 1999
17:14:02 EST
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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: MIRC Chat
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Pat,
I also have IM on my AOL if you want I can put you on mine and vise versa
Sheila
=========================================================================
Date: Thu, 4 Mar 1999
18:23:20 EST
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: GSieb91515@AOL.COM
Subject: Re: Billy's Home
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Glad to hear Billy is home and doing so much better. HAPPY BIRTHDAY BILLY!
Belated Birthday wishes go to Amy and Daryl also. Hope everyone
had a great
day.
The Sieberts
=========================================================================
Date: Thu, 4 Mar 1999
19:07:25 EST
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
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Discovery Channel Show
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I would love a copy also. Please tell me the cost and I will pay you.
Diane Youngblood
445 Horne Hollow Rd.
Culleoka, Tn. 38451
Mallory 11 with aperts
=========================================================================
Date: Thu, 4 Mar 1999
19:59:25 EST
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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: cleft palate
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi Mary,
It's very nice to meet you. How long ago did you move to Florida?
My
daughter Paige no longer has a cleft palate. She was born with
one but, it
was so small that it closed up on it's on. Please keep in touch....thank
you
for you letter.
Love,
Sheila
=========================================================================
Date: Thu, 4 Mar 1999
21:28:18 EST
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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From: Yonstein@AOL.COM
Subject: Re: Billy's Home
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Karen:
Glad to hear that Billy is home and that you don't need the shunt now.&n