Log9807a

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Date:         Wed, 1 Jul 1998 21:03:18 -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:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Nicole's Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello everyone,

Just wanted to let everyone know that Nicole's surgery has been
cancelled for the forth time. It has not yet been rescheduled. We went
to the pediatricians office this morning for the pre-op blood work and
her WBC's (white blood cells) came back at 25,000, which is double what
the doctors would like to see.

When the pediatrician saw this, he cancelled the surgery and referred us
to a hematologist. Her first appointment is for tomorrow afternoon (7/2
@ 3:30p). The hematologist is going to try to figure out why Nicole's
WBC's have been elevated for over a month. Basically he is going to
rule out some things (they think it is a viral infection)?!?

We will let you know more once we learn more.

Jack & Raquel Miller
jara1@bellsouth.net
=========================================================================
Date:         Wed, 1 Jul 1998 20:36:37 -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:         Tim Graves <timg@BELLSOUTH.NET>
Organization: home
Subject:      Nick
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello everyone this is Nick's dad, Tim. We recently took Nick to see Dr
Sargent, and he has decided to go ahead and do the second midface
advancment, instead of waiting as originally planned. We don't have a
surgery date yet but should have one by the end of the month, we have to
take him back for the ct scan of the face and head on july 14th. I
wanted to add that also we had taken him to shriners hospital in SC.
about a month ago to have an orthapedic evaluation and they are planning
a hand surgery to straighten 2 fingers that are trying or are
overlapping, and to get better web space, we have to go back on sep. 22
to get that surgery date.. Are there others who might have that
overlapping problem? Well you must know this is my first time posting on
the list..lol bet you can tell huh.. thanks Tim.
=========================================================================
Date:         Wed, 1 Jul 1998 23:09:20 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:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Finger overlapping
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

I have a small overlapping problem on my left hand. The top portion of my
ring finger rests a little on the top portin of my middle finger. That finger
is unique because it is the only one with a top knuckle that sits right below
the nail. Oddly it doesn't affect my writing, typing or interfere that much.
Toward the end of last year, when I went for the yearly check up, they said it
can be straightened. I'm planning to have it straightened so it's more
comfortable.

-Andrea
=========================================================================
Date:         Wed, 1 Jul 1998 22:59:39 -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:         Robyn Johnston <robyn@ORDATA.COM>
Subject:      Re: Nicole's Surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

JAck and Raquel,

my prayers are with you and Nicole. I hope the specialist will provide you
with some answers. Hang in there.

Hugs, RObyn
=========================================================================
Date:         Thu, 2 Jul 1998 02:27:32 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:         BO p 1912 <BOp1912@AOL.COM>
Subject:      Re: The Most Beautiful Rose Poem
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Can some body send me that Rose poem again I sort of push the wrong buttonand
it was gone ...   Also can some one give me some infro on the shouldershow
they are effected with Aperts Thanks your Friend
                                                   Beth
BOp1912
=========================================================================
Date:         Thu, 2 Jul 1998 09:30:39 -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:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      Happy (American) Independence Day!
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="---- =_NextPart_000_01BDA5D6.C0518316"

This message is in MIME format. Since your mail reader does not understand
this format, some or all of this message may not be legible.

------ =_NextPart_000_01BDA5D6.C0518316
Content-Type: text/plain

> HAVE A SAFE 4th OF JULY!
>
>
> HAPPY 4TH OF JULY!
> ENJOY THE SHOW
>
> <<FIREWO~1.EXE>>

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------ =_NextPart_000_01BDA5D6.C0518316--
=========================================================================
Date:         Thu, 2 Jul 1998 11:15:27 -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:         Amanda / Cathy Curtis <cam@CNW.COM>
Subject:      My Fondest Grettings!!
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0033_01BDA5AA.B7A4DBE0"

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------=_NextPart_000_0033_01BDA5AA.B7A4DBE0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Hello To Everyone!
My Name is Amanda. I am 16 and have ASpert Syndrome. I have had 35 =
Surgeries. I am doing well in school and I love to ride Horses. There I =
guess that is introducing myself. This is my first time posting anything =
on here, I am just trying it out. I think this is really cool, and a =
neat idea to expose people with this 'special conditon' to others who =
have it. Well, I'd better go! Talk to all of ya again soon!
Love Amanda

------=_NextPart_000_0033_01BDA5AA.B7A4DBE0
Content-Type: text/html;
charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.71.1712.3"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello To Everyone!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>      My =
Name is=20
Amanda. I am 16 and have ASpert Syndrome. I have had 35 Surgeries. I am =
doing=20
well in school and I love to ride Horses. There I guess that is =
introducing=20
myself. This is my first time posting anything on here, I am just trying =
it out.=20
I think this is really cool, and a neat idea to expose people with this =
'special=20
conditon' to others who have it. Well, I'd better go! Talk to all of ya =
again=20
soon!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Love Amanda</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>

------=_NextPart_000_0033_01BDA5AA.B7A4DBE0--
=========================================================================
Date:         Thu, 2 Jul 1998 13:01:52 -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:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      NEW MEMBER
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Welcome, Amanda. It is good to have a new member with us. Where are you
from? I hope that you will like our listserver and I am sure we will have
questions that you can help answer.

My son is 2 years old. His name is Daryl. He is a happy fella,
and we have learned so much from him already! He shows us and everyone
around him to never put limitations on anyone. Talk to you later! God
Bless!

                                                Denise Graham
=========================================================================
Date:         Thu, 2 Jul 1998 16:50:25 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:         Jenny Brown <Firefli007@AOL.COM>
Subject:      Re: My Fondest Grettings!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hello Amanda!

Welcome to the family. I am 31, have had 18 surgeries all before 13 or so!.
have a great weekend hope to continue to hear from you.

Jenny in Savannah, Ga
=========================================================================
Date:         Thu, 2 Jul 1998 17:47:48 -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:         Tim Graves <twg@HIWAAY.NET>
Organization: home
Subject:      new email address
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

WE have a new email address effective immediately....
old address: timg@bellsouth.net
new address: twg@hiwaay.net

THANKS
Tim and Carol Graves
=========================================================================
Date:         Thu, 2 Jul 1998 16:21:33 -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:         Amanda / Cathy Curtis <cam@CNW.COM>
Subject:      Hello- To my New Family!!!!
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0046_01BDA5D5.7A1A4140"

This is a multi-part message in MIME format.

------=_NextPart_000_0046_01BDA5D5.7A1A4140
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Hello! It is so nice to hear from everyone! If anyone has any kind of =
Questions for me, Please ask! I love answering and educating people =
about what I am privilaged to overcome! Thanks for e-mailing me, I hope =
to keep in touch with all of you!
Amanda

------=_NextPart_000_0046_01BDA5D5.7A1A4140
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>
<META content=3D'"MSHTML 4.71.1712.3"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>Hello! It is so nice to hear from everyone! If =
anyone has any=20
kind of Questions for me, Please ask! I love answering and educating =
people=20
about what I am privilaged to overcome! Thanks for e-mailing me, I hope =
to keep=20
in touch with all of you!</FONT></DIV>
<DIV><FONT size=3D2>Amanda</FONT></DIV></BODY></HTML>

------=_NextPart_000_0046_01BDA5D5.7A1A4140--
=========================================================================
Date:         Thu, 2 Jul 1998 20:35:47 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:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: My Fondest Grettings!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hi Amanda,

My name is Andrea. I am 20 years old and have Apert too. I'm glad you joined
the group. As you will soon find, it is a wonderful bunch. They have helped
me out so much. I am currently working my way through my sophomore year of
college. I'm majoring in Psychology but would really like to go into
genetics. I've had several surgeries too. You can read more about me and see
me on Teeter's Page

Where are you from? I'm from Southwest Florida, but originally from Illinois.
I would love to hear from you.

Good luck with school.
-Andrea
LUVS2WRTE@AOL.COM
=========================================================================
Date:         Thu, 2 Jul 1998 20:41:30 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:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: Happy (American) Independence Day!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Thanks for the fireworks. It was relaxing to watch after studying biology all
day.

I hope everyone has a very fired up 4th. Stay Safe!!!
I'm not sure I'll be seeing any fireworks here in SW FL due to the fires..

-Andrea
=========================================================================
Date:         Fri, 3 Jul 1998 14:18:43 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Happy (American) Independence Day!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hey, that was great - thanks. I must look at it again tonight when it is dark!!

At 09:30 AM 2/07/98 -0700, you wrote:
>> HAVE A SAFE 4th OF JULY!
>>
>>
>> HAPPY 4TH OF JULY!
>> ENJOY THE SHOW
>>
>>   <<FIREWO~1.EXE>>
>
>Attachment Converted: C:\APPS\INTERNET\MAIL\FIREWO~1.EXE
>
=========================================================================
Date:         Fri, 3 Jul 1998 14:19:35 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Nick/Overlapping fingers
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Tim - great to hear from more fathers! (Must have been the comments about Father's Day that did it!! :-)

Amy has a couple of her fingers overlapping at the tips but she doesn't complain about it. She has a craniofacial/plastics appointment in about 10 days so we will be discussing hands then. I would like them tidied up (without the surgery of course!!) to improve interdigital spaces, straighten, slim down thumbs, etc, but Amy isn't keen on discussing the possibility.

Sorry I can't help with info re managing it, Amy just goes on as if it isn't there.

Regards
Ann
NZ
On the last day of the school term!!! Yaaay!!
=========================================================================
Date:         Thu, 2 Jul 1998 22:20:44 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:         Patricia Smith <Patbrat718@AOL.COM>
Subject:      frontal advancement
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hey all,

Just wanted to let you know that Jasmyn has been scheduled for surgery for
another frontal advancement. It will be happening August 4. She hasn't had
any cranial surgery since she was three months old, so we are learning to hold
our breath again in preparation. You just never get used to it, you'd think
with eight behind us, this surgery thing would be old news. Add us to your
prayer lists, as your on ours.

Patti
=========================================================================
Date:         Thu, 2 Jul 1998 22:24:22 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:         Patricia Smith <Patbrat718@AOL.COM>
Subject:      Nicole
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Millers,

Just wanted to let you know that we are saying our prayers for Nicole. Hoping
that the doctor finds nothing serious and surgery will be shortly ahead.
Nicole is a beautiful baby and we around here, just love showing her off to
all our friends. Keep us posted.

Patti & the munchkins
=========================================================================
Date:         Thu, 2 Jul 1998 21:31:20 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: My Fondest Grettings!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey Amanda!

My name is Laurie Bailey and we have a 2 year old with Apert Syndrome. Just
wondering where you're from.

Laurie
jkb@elpaso.net

----------
From: Amanda / Cathy Curtis <cam@CNW.COM>
To: APERT@LISTSERV.AOL.COM
Subject: My Fondest Grettings!!
Date: Thursday, July 02, 1998 1:15 PM

Hello To Everyone!
      My Name is Amanda. I am 16 and have ASpert Syndrome. I have had 35
Surgeries. I am doing well in school and I love to ride Horses. There I
guess that is introducing myself. This is my first time posting anything on
here, I am just trying it out. I think this is really cool, and a neat idea
to expose people with this 'special conditon' to others who have it. Well,
I'd better go! Talk to all of ya again soon!
Love Amanda
=========================================================================
Date:         Thu, 2 Jul 1998 21:32:40 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: My Fondest Grettings!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Andrea,

Where are you originally from. I'm sure all of us from Illinois would love
to know.

Laurie Bailey

----------
> From: Andrea Gartner <LUVS2WRTE@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: My Fondest Grettings!!
> Date: Thursday, July 02, 1998 7:35 PM
>
> Hi Amanda,
>
> My name is Andrea. I am 20 years old and have Apert too. I'm glad you
joined
> the group. As you will soon find, it is a wonderful bunch. They have
helped
> me out so much. I am currently working my way through my sophomore year
of
> college.   I'm majoring in Psychology but would really like to go into
> genetics. I've had several surgeries too. You can read more about me
and see
> me on Teeter's Page
>
> Where are you from? I'm from Southwest Florida, but originally from
Illinois.
> I would love to hear from you.
>
> Good luck with school.
> -Andrea
> LUVS2WRTE@AOL.COM
=========================================================================
Date:         Thu, 2 Jul 1998 21:27:49 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: Nicole's Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey guys,

If it viral, it usually has to run it's course. Jacob had quite a few viral
infections during his first year. For him, it was a low fever and not
really any other symptoms. Luckily for us, they were never around any
surgeries.

Laurie Bailey
jkb@elpaso.net

----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Nicole's Surgery
> Date: Wednesday, July 01, 1998 8:03 PM
>
> Hello everyone,
>
> Just wanted to let everyone know that Nicole's surgery has been
> cancelled for the forth time. It has not yet been rescheduled. We went
> to the pediatricians office this morning for the pre-op blood work and
> her WBC's (white blood cells) came back at 25,000, which is double what
> the doctors would like to see.
>
> When the pediatrician saw this, he cancelled the surgery and referred us
> to a hematologist. Her first appointment is for tomorrow afternoon (7/2
> @ 3:30p). The hematologist is going to try to figure out why Nicole's
> WBC's have been elevated for over a month. Basically he is going to
> rule out some things (they think it is a viral infection)?!?
>
> We will let you know more once we learn more.
>
> Jack & Raquel Miller
> jara1@bellsouth.net
=========================================================================
Date:         Thu, 2 Jul 1998 21:44:20 -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:         Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject:      Re: My Fondest Grettings!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hi Amanda, welcome to the Family!!!!!

We have twin boys Felipe and Rafael, they are almost 3 y. old. Felipe
was born with Apert's. I am sure you will love this place. Hope to hear
more from you...

Welcome again!
The Ize's from Oklahoma.

PS. We are exchanging pictures, if you are interested just give us your
address and then I'll send you the list of people that are participating
on that. It is nice to send and to receive all this pictures from our
friends.

Amanda / Cathy Curtis wrote:
>
> Hello To Everyone!
>       My Name is Amanda. I am 16 and have ASpert Syndrome. I have had
> 35 Surgeries. I am doing well in school and I love to ride Horses.
> There I guess that is introducing myself. This is my first time
> posting anything on here, I am just trying it out. I think this is
> really cool, and a neat idea to expose people with this 'special
> conditon' to others who have it. Well, I'd better go! Talk to all of
> ya again soon!
> Love Amanda
>
=========================================================================
Date:         Thu, 2 Jul 1998 21:44:24 -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:         Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject:      Re: Vitamin Therapy
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hi Janine,

Today we talked to Felipe's neurosurgeon and asked him about the
vitamin therapy. He said that there is no scientific study about that
and the better thing to do is to keep feeding Felipe as we do, because
there is no vitamin therapy that can substitute a good table food.

        The Ize's.
=========================================================================
Date:         Thu, 2 Jul 1998 23:24:42 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:         BO p 1912 <BOp1912@AOL.COM>
Subject:      Hello everone
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

        Hello Everone
   My name is Beth I am 34 yrs. old and have Aperts I am a nurse aide been
one for 14 yearsI .love to go for walks, take pictures , and meet new people I
see there is alot of people out there sort of my age who have Aperts ...
Even the parnts who have kids with Aperts I would love to hear from you and
see if we have anything in common Please Write me back...   Thanks Beth

                                                               BOp1912
=========================================================================
Date:         Thu, 2 Jul 1998 23:39:55 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:         Diane Youngblood <CoH1862@AOL.COM>
Subject:      Re: My Fondest Grettings!!
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Welcome , Amanda. I am just one of the few that lurk here. When I get things
together, Iwill post some info on my family and send long awaited pics. You
will find this site very informative. Again, welcome.

                                               Diane in hot and dry Tn.
=========================================================================
Date:         Thu, 2 Jul 1998 23:54:57 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:         Belinda Vicars <NephiRose@AOL.COM>
Subject:      Hands
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Happy July 4th!

A while back I emailed about Sarah V. taking 5 steps. I was soooo excited.
Well, much to my disappointment, she stopped and decided not to walk. Our
physical therapist loaned us a walker for her to use (Sarah will be two next
month so it is a small one). Sarah took to it like duck to water. She,
however, does have a little difficulty in manipulating the walker because it
is hard for her to get a good grip on it. She doesn't really quite comprehend
on how to turn it around. We'll work with it until the end of August, by then
we will decide whether to buy one or not. I also scheduled an appt with an
orthopedic surgeon at Primary Children's Hospital in Salt Lake to do a
comprehensive evaluation on her skeletal structure, i.e. shoulders, ankles.
(I had no clue to do this until I saw the different problems popping up on
this Apert list serve). Maybe we'll have more answers next week when we see
him.

The MAIN reason why I am writing is.....Monday I am taking Sarah to see
another hand specialist. I did not like the work of the first one (plus saw
his work on another...ouch!) So I decided to see another one, he's new at
Primary. I want to seem intelligent when I go and interview him (I guess)
but I don't know what concerns I should have about hands as Sarah has had only
one surgery. Do you have any feedback on this on types of surgery procedures
or experiences that you've had?

Sorry so long.

Belinda
=========================================================================
Date:         Thu, 2 Jul 1998 21:38:22 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Amanda / Cathy Curtis <cam@CNW.COM>
Subject:      Re: Hands
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Hello All-
Upon popular demand, I will tell you all where I am from. I live in a
small town in Washington State. Little bit more about myself is, I am the
Mascot for our school, I live on a small farm, and I love to Drive my car,
perform in the Theatre Group I am in and Sing. When I graduate from High
School next year I plan to go into collage and abtain a degree in
Performance Art and Professinal Singing. To the woman who wanted to know
about Hand surgery, I had all my hand surgeries when I was little so I can't
remember. I guess my only piece of advice is to find someone you can trust,
because this person holds your childs future in their hands, they will
become a big part of theirs and your life. My Doctor that has done all of my
surgeries is a brilliant and intelligent Plastic Surgeon. He is like a
second Father to him, I owe him all duty, respect and all of my being. If it
wasan't for him and God, of course, I would not be who I am today. When I
was little, they diagnosed me to not survive many times. The doctors told my
parents I may have speecgh impediments (is that how you spell that?) and be
mentally retarded. I just achieved a 4.0 on my Report Card and I took Piano
Lessons for 6 years. I am currently taking Voice Lessons which I have been
doing for 2 years, and loving it! A word for all parents and people who have
been privilaged to have this special condition, Never give up hope, there is
always a light at the end of the tunnel. I have a saying that I love to say,
I say it in my head beforew I go into surgery- it gives me confidence and
inspiration. here it is, tell me what you think-----
Whenever you come to face the thing you fear, Let the Creator Guide
you!

Isn't it cool! I also wrote a poem in which I will try to attach to this
message!
Talk to all of ya soon!
Amanda
P.S. This is not the Poem- At least I sdon't think it is! Ignore the
attachment! I will try to put it on my Web Page when it is finished! Thanks
again! Sorry this E-mail is so long, I love to talk!!!!!!!!
-----Original Message-----
From: Belinda Vicars <NephiRose@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, July 02, 1998 8:57 PM
Subject: Hands

>Happy July 4th!
>
> A while back I emailed about Sarah V. taking 5 steps. I was soooo
excited.
>Well, much to my disappointment, she stopped and decided not to walk. Our
>physical therapist loaned us a walker for her to use (Sarah will be two
next
>month so it is a small one). Sarah took to it like duck to water. She,
>however, does have a little difficulty in manipulating the walker because
it
>is hard for her to get a good grip on it. She doesn't really quite
comprehend
>on how to turn it around. We'll work with it until the end of August, by
then
>we will decide whether to buy one or not. I also scheduled an appt with an
>orthopedic surgeon at Primary Children's Hospital in Salt Lake to do a
>comprehensive evaluation on her skeletal structure, i.e. shoulders, ankles.
>(I had no clue to do this until I saw the different problems popping up on
>this Apert list serve). Maybe we'll have more answers next week when we
see
>him.
>
>The MAIN reason why I am writing is.....Monday I am taking Sarah to see
>another hand specialist. I did not like the work of the first one (plus
saw
>his work on another...ouch!) So I decided to see another one, he's new at
>Primary. I want to seem intelligent when I go and interview him (I guess)
>but I don't know what concerns I should have about hands as Sarah has had
only
>one surgery. Do you have any feedback on this on types of surgery
procedures
>or experiences that you've had?
>
>Sorry so long.
>
>Belinda
>

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Date:         Fri, 3 Jul 1998 00:51:00 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Nicole's Surgery
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Raquel,

I cannot tell you how sorry I am to hear that the surgery was cancelled again.
But I think that God is telling you something, like, Nicole may not be ready
yet. It must be very hard on you to get yourself all prepared for surgery and
then not going forward. Hopefully the hemotologist will be able to tell you
something and the next date can go forward as planned.

Good luck with everything.

Lynn Thornquist
=========================================================================
Date:         Fri, 3 Jul 1998 08:19:25 -0400
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From:         Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM>
Subject:      Sarah V's steps
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Hi Belinda! (and everyone else--I've just been kind of lurking here
lately!) Our Sara sort of did the same thing. She'd take a few steps and
then not any more for a few weeks. It was frustrating--kind of like a
roller coaster ride. Our PT then recommended a particular toy for her. It
was the Fisher Price walker. The kids hold on to it and push it. A lot of
those toys fall over really easily, but not this one. It didn't tip easily
at all, and if the kids lean on it it offers a little bit of resistance so
it doesn't just shoot forward away from them--so they don't end up on the
floor on their face! She said that it was the best designed kids' walking
toy shed'd ever seen. Of course, we went right out and bought it (around
$25 I think) Best money we ever spent! As soon as we took it out of the
box she crawled right over, pulled herself up, grabbed the handle and took
off! Within 4-6 weeks she was walking around independently and I just sold
the thing a few weeks ago at our yard sale. Sorry for sounding like a PR
person for Fisher Price but it was wonderful to see her zip around! Hope
this helps. Good luck with your visit to the new hand doctor. To everyone
else who's experiencing frustration out there, our thoughts are with you.
Especially Nicole and her parents--try to stay calm. Even when you KNOW
that everything happens for a reason--it still can make you want to scream
sometimes, huh?!
=========================================================================
Date:         Fri, 3 Jul 1998 08:33:57 EDT
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: welcome and then some
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Well..first I'd like to welcome Amanda to the group..my son Jordan is almost
10 months and has had 1 craniofacial surgery and 2 hand surgeries. I always
love to see young adults/adults joining the group as it provides some insight
as to what the future will bring. I hope you find this as great a place as we
have.

secondly..sorry to hear about Nicoles cancelation..hopefully some answers will
be given to ya'll at the hematologists...

Regarding the hitting ssue..my brother use to abng his head on cribs and walls
whne he wa slittle. Much to my paretns horor he did it several times in the
pediatricians office. Needless to say, as he is 21 now, he grew out of
it...but I don't think it was until he was 4 or so...I often tell him that
this explains A LOT.!!! Just kidding...hes quite the Einstein!!!!

We have been very busy here w/ a recovering Jordan and sorta out of touch...he
has decided this crawling and stuff is quite useless and this splint of his
provides great assistance in the standing and trying to walk phase of things.
It seems in 3 weeks he learned to crawl, go form belly to sitting, and pulling
up and trying to walk. I have no idea what will be next. But I am finding I
need a nap, when he naps even more so than when he was an infant. It also
means no more sleeping in as when he wakes up, its time to GET BUSY...no more
relaxing and looking at the moblie for a few extra minutes!!! It has greatly
diminished my computer time as well!!!!

Hope everyone is doing well..Good luck to upcoming surgery candidates..Hope
everyone has a fun and safe 4th!!!!!!

Jenn(still not burning yet..Tampa/St. Pete)
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Date: Fri, 3 Jul 1998 11:05:58 -0