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>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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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
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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
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              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
MIME-Version: 1.0
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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)
=========================================================================
Date:         Fri, 3 Jul 1998 11:05:58 -0400
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Nicki Update
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Hello everyone,

Well we visited the Hematologist yesterday and, thank God, everything is
fine. He also seems to think it is viral, like the pediatrician. All
her cells are good cells so there is nothing to worry about. We have an
appointment first thing Monday morning with the pediatrician he wants to
re-check the WBC to see if they have gone down. It's really interesting
on Wednesday at the pediatricians office they were 25,000 and then on
Thursday at the hemotologists office they were 19,000 still high but
going down. We'll see, they have been going up and down for the past
three weeks. The hemotologist says that when you have a few kids in the
house like we do its hard sometimes to get those virusus out. Right now
Jack has a cold and he's not even a kid, we just seem to be having a
hard time shaking those sick critters away from us. Anyway I also
believe in what Lynn says I don't think Nicole or God is ready yet for
her to have the surgery, the day will come when the time is right, we
just have to hang in there.

Well, wish you all a happy and safe 4th of July....Jenn keep those
oxygen masks on....

Raquel Miller.....
=========================================================================
Date:         Fri, 3 Jul 1998 11:21:55 -0400
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Fireworks
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Laura,

Thanks for the fireworks, they were great....

Raquel...
=========================================================================
Date:         Fri, 3 Jul 1998 11:35:14 -0400
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Amanda
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Oh my goodness Amanda those words that you wrote were so inspiring to me
tears are rolling down my face at this moment as I write to you. I'm
sorry, let me introduce myself. My name is Raquel my husbands name is
Jack we have four beautiful children they are Michelle 14, Steven 10,
Erica 4 and Nicole 9months born with Aperts. I know that sometimes
people say or write things and are not aware how they are touching
others, I just want you to know that you have touched me deeply. I am
so glad to hear of how great you are doing and the total positive out
look you have on life. That is how we want our little Nicole to be, it
is so important that you feel that way and so important that you give
credit to whom deserves it primarily God and your doctors. You can look
up Nicole in Teeters page and also the rest of the kids. I am really
glad you decided to join the listserv welcome and please keep in touch.
We are trying to get through Nicole's first surgery(cranial) and have
been having a bit of trouble it has been cancelled four times, but we
know that God is not ready to let this surgery happen yet, but I know
the day will come and we won't even know what hit us. Anyway again
welcome and we hope to hear from you soon.

Raquel Miller in Sunny South Florida....
=========================================================================
Date:         Fri, 3 Jul 1998 11:39:06 -0400
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Welcome Beth
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Hi Beth,

Welcome to our wonderful family...We are very glad that you joined us
you will find this a very comforting place. I know we find a lot of
help and great suggestions here. Although I think we will have to call
on you for suggestions since you've been there done that and we are just
starting.

We have four kids and our youngest Nicole was born with Aperts she is
now 9 months old and we have only just begun. But of course with this
great listserve it will make our jobs a lot easier. Again welcome and
hope to hear from you soon..

Raquel Miller
=========================================================================
Date:         Fri, 3 Jul 1998 11:46:03 EDT
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From:         Christina Mathis <Nodrmat26@AOL.COM>
Subject:      Re: Amanda
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Amanda:

Hello and welcome...my name is Christina Mathis and I have two children, Tia
(5) and Zoey (17 mos) with Aperts. I've just been kind of lurking lately;
I've been so busy, but wanted to welcome you. You sound like a wonderful
person who hasn't let the syndrome get you down, but inspire you all the more.
My little Zoey is a fireball and I know that she has a wonderful future ahead
and can do anything that she sets her stubborn little mind to. Thanks for
joining us, you're truly an asset to our group.

Zoey has had one surgery on her head and one, going on two surgeries (the end
of this month) on her little hands. The orthopedic people say that her hands
are one of the more severe cases that they've seen...but I haven't let that
get me down...Zoey does so much with them and amazes us all!

Hope to see you around. I'll send a picture of the girls.
Bye,
Christina
From Hot (hope it rains) San Antonio

=========================================================================
Date:         Fri, 3 Jul 1998 10:03:32 -0700
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From:         Amanda / Cathy Curtis <cam@CNW.COM>
Subject:      Re: Amanda
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Hello To All--
Thnak you all for answering my E-mail. I have wonderful news. I just
finished a Book of Poetry I was writing, Last night. It is really cool. I am
going to give it to my dad and he is going to try and sell it to publishing
companies. Well, I'd better go!
See Ya, (or talk to you) Later
Amanda
-----Original Message-----
From: Jack and Raquel <jara1@BELLSOUTH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, July 03, 1998 8:33 AM
Subject: Amanda

>Oh my goodness Amanda those words that you wrote were so inspiring to me
>tears are rolling down my face at this moment as I write to you. I'm
>sorry, let me introduce myself. My name is Raquel my husbands name is
>Jack we have four beautiful children they are Michelle 14, Steven 10,
>Erica 4 and Nicole 9months born with Aperts. I know that sometimes
>people say or write things and are not aware how they are touching
>others, I just want you to know that you have touched me deeply. I am
>so glad to hear of how great you are doing and the total positive out
>look you have on life. That is how we want our little Nicole to be, it
>is so important that you feel that way and so important that you give
>credit to whom deserves it primarily God and your doctors. You can look
>up Nicole in Teeters page and also the rest of the kids. I am really
>glad you decided to join the listserv welcome and please keep in touch.
>We are trying to get through Nicole's first surgery(cranial) and have
>been having a bit of trouble it has been cancelled four times, but we
>know that God is not ready to let this surgery happen yet, but I know
>the day will come and we won't even know what hit us. Anyway again
>welcome and we hope to hear from you soon.
>
>Raquel Miller in Sunny South Florida....
>
=========================================================================
Date:         Fri, 3 Jul 1998 13:36:45 EDT
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From:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: Nicki Update
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I'm so glad to hear that it wasn't anything serious.
Sometimes the body does weird things that just make you wonder.
I hope Jack gets over his cold.

-Andrea
=========================================================================
Date:         Fri, 3 Jul 1998 13:39:40 EDT
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From:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: Amanda
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I hope you have success with that book of poetry!!!
We both have something in common! I write poems to as often as I could. I'd
love to read some of your poems, and you can read some of mine.

-Andrea
=========================================================================
Date:         Fri, 3 Jul 1998 13:41:58 -0400
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From:         Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
Subject:      Michelle's Dental
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Hello everybody:

It has been great hearing from so many people, and great supporting
information.

Michelle's dental surgery is scheduled for July 10 at Luthern General in
Park Ridge, IL. Overcrowding is becoming a big problem and the Dentist
plans on removing up to 8 teeth.

She will be given a general anesthetic so we hope she does'nt catch a cold
this week. Michelle seems to be OK about it so far. At least pulling baby
teeth should'nt be to difficult.

We will keep you all informed.

Ryan and Martha
=========================================================================
Date:         Fri, 3 Jul 1998 14:18:02 EDT
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From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Fwd: Hello and thank you!
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With Joanne's permission I am passing this along to all of you to let you know
how she is doing.

Janine

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Hello Janine,

Thank you for your thoughts. I really appreciate knowing you are
thinking of me. I am only checking my mail every now and then, so I
apologize if you have been waiting long for a response.
It amazes me when your intuitions help you prepare for something.. what I
am getting at is that when I left the list, I was very dependent on that
communication and was sitting here daily for hours at a time reading and
responding to my mail. Something told me I needed to quit for a while
and I had the intuition that I would need my time and energy to deal with
something(s) big. Well, my intuition was right. First, my beloved bird,
Clarence flew on to Heaven two weeks ago. It was a great shock and I'm
not quite through the grief process. I had tests ran to be sure the other
love of mine, Coal could not get what Clarence died of. Thank God, at
the same time sadly, Clarence died of a ruptured blood vessel. I have
monitored Coal closely to be sure he was okay mentally and physically.
He is fine and due for a check up soon so I will be sure he's really
okay. (birds hide physical illnesses to protect themselves)... Now I am
in the middle of a what I feel is a serious situation at my job. I just
sat down at the computer to journal my version of the situation when I
decided to check my mail. I am glad I did. I was in tears five minutes
ago. Knowing you were "out there" helped! Thank you! Due to the
confusion and complicated matter at work, and the confidentiality, I
cannot share. Sorry.

I shared with my mom last night my thoughts on the six major changes I
have endured in the past six months. We are both ready for some
monotony!

There is a pile of pictures of me sitting here ready for envelopes, but
time slips away faster and faster. One of these days they will be in the
mail!

Thank you again Janine, I really needed a shoulder! This message was for
YOU, but if you want to share it with the list, please do so. Prayers
are more than welcomed! I will be back soon!

Miss you!
Joanne

_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]

--part0_899489882_boundary--
=========================================================================
Date:         Fri, 3 Jul 1998 14:22:32 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:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: The Most Beautiful Rose Poem
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Dear Beth:

If you send me your address I will send you something thru the regular mail
that was sent to me when I asked about the shoulders.

Sorry about the poem,I lost it also.

Janine
Yonstein@aol.com
=========================================================================
Date:         Fri, 3 Jul 1998 14:24:38 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: My Fondest Grettings!!
Mime-Version: 1.0
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Dear Amanda:

Welcome to the list. Wow, 35 surgeries sounds like a lot. My daughter Emily
will turn one this month and has had 3 so far. I am sure you will find this
list a great place. Please write us more and let us know where you are from
and more about you.

Janine Krebs
(new York)
=========================================================================
Date:         Fri, 3 Jul 1998 14:40:04 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Nicki Update
Mime-Version: 1.0
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Glad to hear Nicki is ok. Hopefully the white count will clear up quickly and
you can go ahead with surgery.

Janine
=========================================================================
Date:         Fri, 3 Jul 1998 14:48:32 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Vitamin Therapy
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Claudia:

I did access the page thru Yahoo. Very interesting. Thanks, Janine
=========================================================================
Date:         Fri, 3 Jul 1998 14:49:11 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Amanda
Mime-Version: 1.0
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Christina,

I read what you said about Zoeys hands being one of the worst cases....Jordans
are that way too...bUt its amazing...we had to change the dressing today form
the 2nd surgery......doctors office closed and Joe decided we could do it
ourselves.....LET ME SAY YUCKO!!!!...but...hes got 2 thumbs and 2
pinkies.....quite a beautiful site!!!!
As for the rest of the fingers...well, we're going to try for them all, but
are leaving it to a higher power to determine if they will all make it...he'll
do great no matter will Zoey..and all of our other kids out there!!!!!!!!

Also..welcome to Beth...man we are growing by leaps and bounds!!!!!!!

Jenn w/ some extra computer time w/ dad having the day off!!!!(Tampa/St. Pete)
=========================================================================
Date:         Sat, 4 Jul 1998 12:15:59 EDT
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From:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      Re: Hands
Mime-Version: 1.0
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Amanda-

Welcome. You are an incredible young woman. Your accomplishments and
positive attitude a truly a role model that I want for our son Jonathan. He
is only 19 months now but I can only pray that he has the wisdom and love for
life that you do. We are so glad that you joined our family and look forward
to talking to you more. I know you will be a great help and we go along
learning everyday. Thanks for sharing your story.

The Sieberts
Brenda, George, Melissa (9) and Jonathan
Houston, Tx
=========================================================================
Date:         Sat, 4 Jul 1998 12:24:46 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      various
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Ryan and Martha--Good luck with the surgery. I'm sure this is something we
will have to endure in the future. You will be in our prayers for the 10th.

Jack and Raquel--I'm glad to hear that the report came back good and that
there is not something more serious causing Nicki's high WBC count. I know
how frustrated you guys are from this roller coaster. It's hard enough to get
pyched for surgery once let alone 4 or 5 times.

Patti--I was showing some old neighbors that moved out of the country our
special photo album last night and we were just commenting on how good Jasmyn
looked. I can't believe she hasn't had any frontal surgeries since 3 mos.
You are very lucky. Good luck in August. We will pray that Jasmyn stays
healthy in preparation for her surgery.

Hi Beth--Glad to hear from you again.

HAPPY JULY 4TH TO AMERICA AND EVERYONE! Have a wonderful family celebration.

Brenda
Houston
=========================================================================
Date:         Sun, 5 Jul 1998 17:43:22 +1200
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Vitamin Therapy
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Which food, grown in which soil and fertilised with what fertilisers?

Though it be the same food (e.g. bananas, apricots, carrots or whatever) it doesn't mean it is created equal in vitamins and minerals, because it depends where it is grown and by whom! Adelle Davis has interesting things to say about this subject.

We are listening to a tape of Joel D. Wallach at the moment, and among all the other thought-provoking things he has to say, he does point out that doctors have a short life span and they (usually) are not proponents of vitamin supplements.

Cheers,
Ann
NZ

At 09:44 PM 2/07/98 -0500, you wrote:
>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:         Sun, 5 Jul 1998 15:38:06 -0700
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From:         Richard Tait <rjrtait@MARS.ARK.COM>
Subject:      holidays
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello to everyone!
I am sorry that I have been gone for a long time, but I have been very busy
of late. I still have about 50 emails to read; I'm not sure that I will
make it before I leave for 1 week on the lake.

Thank you to everyone who wished Julia a Happy 2nd Birthday; she had a good
day. She has been doing very well lately, & has begun to really talk since
her April cleft palate repair. The Infant Development people just assessed
her at easy 21 months development across the board. She is better in some
areas & worst in others. She is a bit delayed in the fine motor skills, as
we all expected. She had a really busy day that day, so I know that she can
do better when she sets her mind to it, but she is very strong willed, &
didn't feel like playing the games that needed to be played for the testing.
We are all very happy with her progress.

I still haven't been able to get the final okay to send her picture, but she
has been blessed with all of your pictures that have come in.

I know this is long, but I figure that it has been at least 3 weeks since I
wrote, and will be 1 more before I get to it again.

There has been a lot of talk about runny noses; Julia has had a VERY runny
nose all of her life, and I finally asked the doctor about it specifically.
He said that it could be a sign of allergies.

About temper tantrums, I have raised many children, and I find that it is
usually a sign of wanting attention or of frustration. I find that for the
attention, I stop what I am doing for a few minutes and do something with
the younger children; with the older ones, I say that they need to let me
finish what I am doing, and ask appropriately for my time. The frustration
one is big with Julia, and I find that we have had to give her some "signs"
to be understood with. If that doesn't work, I find that I need to go
through a long list of the things that she usually wants until I "get" what
she is trying to say. Sometimes it's juice, and sometimes it's play. I
hope that this helps.

Julia also has the limited shoulder movement, and I have seen an orthopedic
surgeon. He wanted her to grow a bit more to see what develops; in the
meantime, we have done normal stretching stuff.

Welcome to all the new people, and good luck to those with surgery dates
coming up. Sorry about your cancelation Nicole, it's tough, but the day
will come soon enough.

Always thinking of Christine, BJ & family, and also the Kilners.
Talk to you soon, (but not too soon)!
Rene & family
rjrtait@mars.ark.com
=========================================================================
Date:         Sun, 5 Jul 1998 20:27:54 -0400
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Teeth
MIME-Version: 1.0
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Hello everyone,

I hope you all had a safe and happy 4th....

I have a question seeing how the Bradley's mentioned that Michelle is
going in for dental surgery to remove at least 8 teeth. I'm assuming
that is something that eventually we will have to go through. But my
question is as follows: The overcrowding occurs because the kids have
more teeth than normal or is it that there is not enough room for the
teeth to grow. I guess we should have asked the orthodondist that
question but I didn't go and I forgot to tell Jack to ask it. Any
information will ease my curiosity....

Raquel.....
=========================================================================
Date:         Sun, 5 Jul 1998 22:12:44 -0700
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From:         Robin MacDonald <macdonal@GOLDEN.NET>
Subject:      Re: Teeth
MIME-Version: 1.0
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Jack and Raquel wrote:
>
> Hello everyone,
>
> I hope you all had a safe and happy 4th....
>
> I have a question seeing how the Bradley's mentioned that Michelle is
> going in for dental surgery to remove at least 8 teeth.

I beleive it is a combination of both ...a smaller jaw to accommodate in
some cases, more teeth. I know our daughter has one extra tooth and a
smaller jaw!

Hope all you american folk had a great 4th...Canada Day was on July
1st...thank god our founders had the foresight to plan these holidays in
the summer!
=========================================================================
Date:         Sun, 5 Jul 1998 22:07:34 -0500
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From:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: teeth
MIME-Version: 1.0
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Hi all,

Hope everyone had a great 4th.

Just thought I would add a little input with our experience with Nick and
his teeth. He had the most beautiful baby teeth. Straight and real close
together. Well once he lost those teeth, the new ones starting coming in
and of course they are bigger and he didn't have room for them. He had his
lower canine teeth pulled on April.
He has to see his orthodonist in a few months to see if he feels any more
teeth need to be pulled. From there Nick will get expansions put in to pull
the teeth out some to make room for others coming in.
He will eventally have expansions on the upper and lower. This will be
probably a 2-3 year thing.
After that he will get a mid face and later braces.

Hope this helps

Judy
=========================================================================
Date:         Mon, 6 Jul 1998 16:18:17 +1200
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Teeth
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Raquel

My recollection of early discussions with Amy's surgeon is that our children have the same number of teeth as would be expected in any child, but as the midface grows at half the "normal" rate the teeth become crowded. The paper on this in the Clinics of 1991 refers to crowding rather than extra teeth (unless I have missed something).

As with any child, however, it is important to know what is happening for THAT child and use any other information as a guideline only.

Good luck with the orthodontist.

Regards,
Ann
NZ
=========================================================================
Date:         Mon, 6 Jul 1998 00:32:48 EDT
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From:         Christina Mathis <Nodrmat26@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
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Hello All!

My question about teeth is that Zoey is 17 months old and still has not one
tooth yet. Anyone had that experience. The dental people said they weren't
going to be concerned until she's two, then they'd do x-ray's to make sure she
had teeth at all.

Goodnight,
Christina Mathis
Sunny San Antonio
=========================================================================
Date:         Mon, 6 Jul 1998 01:06:13 EDT
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From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Teeth
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Raquel,

I believe that it is because Apert mouths are much smaller than normal. They
are narrow. I think that is why the teeth removal at a young age is
necessary, but we have an app. with a dentist on July 10. I will ask then.
Our geneticist has mentioned to us about a jaw widener for Andrew because his
mouth is not the typical narrow size. This widener will give some of the
teeth room to come in properly. My feeling is that Andrew will probably have
it put it when he is around 4 years old. But like I said before, we will wait
and see what the oral surgeon has to say. Good luck with your question.

Lynn
=========================================================================
Date:         Mon, 6 Jul 1998 01:08:48 EDT
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From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
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Judy,

You talk about expansions, do you mean jaw wideners. What has your
orthodontist said in the past about those and at what age? As you will read
in my response to Raquel, our geneticist mentioned something about that in the
past. I would love to know your input. Feel free to e-mail me personally.

Lynn Thornquist
Thornq@aol.com
=========================================================================
Date:         Mon, 6 Jul 1998 01:13:51 EDT
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From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
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Chistina,

Do not worry, getting teeth late is typical in Apert. Andrew did not get his
first tooth until he was about 14 months old. And he still does not have that
many. They are coming in very, very slowly. I agree with your surgeon about
not worrying about it until she is 2 years old. Andrew doesn't utter much at
all, alot of jargon and a couple of words, but his pediatrician is not worried
because he understands alot. So do not worry about this, every child is
different, regardless of the disability. Hope that helps.

Lynn
=========================================================================
Date:         Mon, 6 Jul 1998 00:38:21 -0700
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From:         Robyn Johnston <robyn@ORDATA.COM>
Subject:      tonsils and adenoids
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello, Robyn Johnston here, mom to Brenna who is 2 and was born with
Crouzons. I am still mostly lurking. Can't seem to ever get caught up!
Caden is 3 months old now and starting to sleep a little more at night
(about 6 hours and sometimes more!) so I am getting a little more computer
time! Actually Brenna keeps us up more at night than he does. I guess
that's to be expected.

First of all, welcome to all of the new members. This list is really
growing lately. It is wonderful! A great place to share and offer each
other support.

The reason I am writing is I know several of your kiddo's have had thier
tonsils and adenoids removed. Brenna is going to the ENT in a week so I
wanted to discuss this with him. I would love to hear about your
experiences. Her apnea at night is moderate and her breathing is very
noisy and labored. She actually stops breathing for short periods of time
quite frequently due to physical structures. WE keep a monthly check on
her blood chemistry and she is getting adequate oxygen levels overall, so I
know she is ok. It is still hard for me to listen to her every night. I
am going to ask about this procedure. I would like your opinions on if the
surgery really helped your children. And if the results are long term, or
if it has to be repeated. She has had 2 sets of stents in already with
short term success.

I hate to think about any more surgeries, but the poor little poop's
breathing is so labored I am about ready to beg the DR. to do it just so
she can have some relief!

You can E mail me privately if you like, or on the list. I would love any
feedback about it.

Thanks, Robyn
robyn@ordata.com
=========================================================================
Date:         Mon, 6 Jul 1998 08:44:25 EDT
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Teeth
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I was told the overcrowding is a result of a smaller than "normal" mouth. I
have met a family in South Fla. (not on our list) whose daughter is 9 and
doesn't ahve this problem though..her mouth size is adequate. So I am assuming
its not an absolute!!

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Mon, 6 Jul 1998 09:31:59 -0500
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From:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: teeth
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Lynn,

I suppose that exapansions and jaw wideners are one and the same. they
bring the teeth out to allow more room for new teeth. Nick's orthodonist
does not put these on until several baby teeth are lost, In Nick's case,
x-rays showed new teeth coming up under the canine teeth that were not
loose yet. So the canine theeth got pulled.

Expansions can be in anyone's mouth that has overcrowded teeth. As a matter
of fact, Nick's sister had them years ago when she was small. They work
like braces in the aspect that one needs to turn a key on a daily bases.

Those that I am aware of normally do not get expanions until they are eight
and older.

In Nick's case the orthodonist had Nick's dentist pull the teeth which was
a piece of cake. Nick took the shots in the mouth like a trooper and when
the time came for the teeth to be pulled, they were out in just a few
minutes.

Hope this helps,

Judy

----------
> From: Lynn Thornquist <Thornq@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: teeth
> Date: Monday, July 06, 1998 12:08 AM
>
> Judy,
>
> You talk about expansions, do you mean jaw wideners. What has your
> orthodontist said in the past about those and at what age? As you will
read
> in my response to Raquel, our geneticist mentioned something about that
in the
> past. I would love to know your input. Feel free to e-mail me
personally.
>
> Lynn Thornquist
> Thornq@aol.com
=========================================================================
Date:         Mon, 6 Jul 1998 12:19:43 -0400
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From:         Colleen Jones <coljones@PTDPROLOG.NET>
Subject:      TEETH
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Jacob (2years old) only has his bottom two front teeth. He is having a
very difficult time getting his teeth thru. His gums are swollen
everywhere. We see the dentist at the end of the month to see if there is
anything to do. Has anyone out there had the gums cut to let the teeth
thru? (I seem to remember reading about it sometime). If so, does it help?
I also feel this teething is creating some breathing problems at night
because of extra secretions. Jacob is scheduled for a sleep study tomorrow
night but he came down with pneumonia again so he is doing terrible at
night. This is the second time with pneumonia since March. Wish we could
figure out why he got it again. Anyone else with this problem? Hope
everyone is doing well and having a good summer so far.
Colleen and gang
coljones@ptdprolog.net
=========================================================================
Date:         Mon, 6 Jul 1998 11:29:19 -0700
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From:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      Teething
MIME-Version: 1.0
Content-Type: text/plain

Hi Christina and everyone!

I asked the same question regarding teething back in November '97.
Everyone responded that it is normal for our children to teeth slower.
The following is the message I sent on 11/24/97:

TEETHING:
Martha is now 22 months old. She was teething slower than the average
kid. The only teeth she had was four top front and two at the bottom.
However, in the last month (or so) it seems that she has a "bunch" of
teeth all coming at the same time. There's a couple of molars in the
back and all the front ones breaking through. Poor baby's been running
fevers for about a week and her gums are swollen and red.
Is this common for Apert's kids?

Good luck & god bless!
Laura
Los Angeles, California
=========================================================================
Date:         Mon, 6 Jul 1998 13:20:55 -0500
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From:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: Michelle's Dental
MIME-Version: 1.0
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Hey guys!

Where are you from that you are doing this procedure in Park Ridge, IL? We
live in central Illinois and come to Chicago all the time for Jacob's
doctors appointments. If you live close, we should get together.

Laurie Bailey
jkb@elpaso.net

----------
> From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Michelle's Dental
> Date: Friday, July 03, 1998 12:41 PM
>
> Hello everybody:
>
> It has been great hearing from so many people, and great supporting
> information.
>
> Michelle's dental surgery is scheduled for July 10 at Luthern General in
> Park Ridge, IL. Overcrowding is becoming a big problem and the Dentist
> plans on removing up to 8 teeth.
>
> She will be given a general anesthetic so we hope she does'nt catch a
cold
> this week. Michelle seems to be OK about it so far. At least pulling baby
> teeth should'nt be to difficult.
>
> We will keep you all informed.
>
> Ryan and Martha
=========================================================================
Date:         Mon, 6 Jul 1998 13:32:30 -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:      Sleep Studies
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey gang:

I've seen alot of writing on sleep studies. Why are they being performed?
When does this usually happen? Is it something that the doctors suggest?

Jacob's doctors have never said anything about this to us. So, I am
wondering if there is something I need to be looking for.

One week from tomorrow (July 14) and Jake gets his third set of tissue
expanders.

Looking forward to our weekend in July (Judy, Dori).

Laurie Bailey
jkb@elpaso.net
=========================================================================
Date:         Mon, 6 Jul 1998 15:20:33 -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:         "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM>
Subject:      Re: Sleep Studies
MIME-Version: 1.0
Content-Type: text/plain

The sleep studies are frequently done because the constricted airways
and configuration of the bones, etc., in Apert kids can cause sleep
apnea. Sleep apnea is when breathing starts/stops and oxygen levels in
the blood can drop. Signs of apnea are breathing problems during sleep,
frequently falling asleep during the day, etc. It can lead to cardiac
problems. Our son (age 5) had a sleep study a few months ago at the
suggestion of our ENT and he's scheduled for tonsil/adenoid surgery this
Thursday as his apnea is fairly severe. We didn't think it was severe
since we tend to reposition him when he's sleeping and that eliminates a
lot of the hubbub, but the study showed problems.

The sleep study itself is pretty easy and non-invasive - the technician
hooks up lots of leads and monitors and usually watches the person as
they sleep via closed circuit TV. They analyze the data and provide the
Dr. with their analysis.

        -----Original Message-----
        From:   Laurie Bailey [SMTP:jkb@ELPASO.NET]
        Sent:   Monday, July 06, 1998 14:33
        To:     APERT@LISTSERV.AOL.COM
        Subject:        Sleep Studies

Hey gang:

I've seen alot of writing on sleep studies. Why are they being
performed?
When does this usually happen? Is it something that the doctors
suggest?

Jacob's doctors have never said anything about this to us. So, I
am
wondering if there is something I need to be looking for.

One week from tomorrow (July 14) and Jake gets his third set of
tissue
expanders.

Looking forward to our weekend in July (Judy, Dori).

        Laurie Bailey
        jkb@elpaso.net
=========================================================================
Date:         Mon, 6 Jul 1998 18:05:30 -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:      Don't Quit
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

I hope you like it!

The Ize's.

DON'T QUIT

by Marilyn Wilson

                            When things go wrong,
                            As they sometimes will,
                  When the roads you're trudging seems all uphill,
                  When the funds are low and the debts are high,
                            And you want to smile,
                             But you have to sigh,
                      When care is pressing you down a bit-
                              Rest if you must,
                             But Don't You Quit!

                     Life is strange with its twists and turns,
                     As Every One of us sometimes Learns,
                         And many a fellow turns about
                   When he might have wond had he stuck it out.
                    Don't give up through the pace seems slow-
                       You may succeed with another blow.

                          Often the goal is nearer than
                      It seems to a faint and faltering man;
                        Often the struggler has given up
                  When he might have captured the victor's cup;
                And he learned too late when the night came down;
                      How close he was to the golden crown.

                       Success is failure turned inside out-
                      The silver tint of the clouds of doubt,
                    And you never can tell how close you are,
                      It may be near when it seems AFAR;
                   So stick to the fight when you're hardest hit-
               It's when things seem the worst that you mustn't Quit!
=========================================================================
Date:         Mon, 6 Jul 1998 20:19:48 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:         Belinda Vicars <NephiRose@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 98-07-06 01:03:48 EDT, you write:

<< y question about teeth is that Zoey is 17 months old and still has not one
tooth yet. Anyone had that experience. The dental people said they weren't
going to be concerned until she's two, then they'd do x-ray's to make sure
she
had teeth at all.
>>
Christina

Sarah V. had the same problem. She just barely got 6 teeth at 23 months. It
is really slow and she seems to have a really difficult time teething
(painful). The doctors said not to worry and that the slowness is actually a
blessing because of the eventual overcrowding. Better to happen later than
now so young. So I'd be patient and wait even though it is hard not to be
concerned.

Belinda
=========================================================================
Date:         Mon, 6 Jul 1998 21:33:21 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:         Christina Mathis <Nodrmat26@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Belinda~

Zoey's Mom here and thanks for the advice on the teeth. I've been told that
under normal circumstances, the longer the teeth stay in the gums the better,
so I'd always assumed that in Zoey's case it was also a good thing. She
doesn't seem to have any painful teething and we are feeling very blessed
about that. I will try and be patient....I know that she will be even more
adorable (is that possible?) with a few teeth. :o)

Christina
San Antonio
=========================================================================
Date:         Mon, 6 Jul 1998 23:22:32 -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:      Special message for Kilners
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BDA934.F3A34900"
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This is a multi-part message in MIME format.

------=_NextPart_000_01BDA934.F3A34900
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Hey gang,

I was in the specialchild magazine on the internet and came across a poem
that really touched my heart.

I wished I would have found it a few months ago to send out to the Kilners.
I want to send it now because I think it still has meaning, not only for
them but, for all of us.

Hope you enjoy. It's called God's Lent Child.

Laurie Bailey
jkb@elpaso.net
------=_NextPart_000_01BDA934.F3A34900
Content-Type: application/octet-stream; name="lentchild.htm"
Content-Transfer-Encoding: quoted-printable
Content-Description: lentchild (HTML Document)
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    <title>READ ME: "GOD'S LENT CHILD"</title>=0A=
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      <h1>READ ME: "GOD'S LENT CHILD"</h1>=0A=
    </center>=0A=
<hr size=3D7 width=3D75%>=0A=
<center>[ <a href=3D"#followups">Follow Ups</a> ] [ <a =
href=3D"#postfp">Post Followup</a> ] [ <a =
href=3D"http://specialchild.com/bbs6/index.sht">Back to Parent to Parent =
Support Board</a> ]</center>=0A=
<hr size=3D7 width=3D75%><p>=0A=
Posted by <a href=3D"mailto:catmills@hotmail.com">Jessica</a> on May 23, =
1998 at 10:03:44:<p>=0A=
                       GOD's Lent Child<br>I'll lend you for a little =
while,<br>A child of mine, GOD said,<br>For you to love thee while she =
lives<br>And mourn for when she's dead.<p>It may be one or two years, =
<br>or forty-two or three<br>But will you, till I call her back,<br>Take =
care of her for me?<p>She'll bring her charms to gladden you<br>And =
should her stay be brief,<br>You'll have her lovely memories<br>As a =
solace for your grief.<p>I cannot promise she will stay<br>Since all =
from Earth return<br>But the lessons taught below<br>I want this child =
to learn.<p>I've looked the whole world over<br>In search for teachers =
true,<br>And from the things that crowd life's lanes,<br>I have chosen =
you. <p>Will you give her all your love,<br>Nor think the labor =
vain<br>Nor hate me when I come to take <br>This lent child back =
again.<p>I fancied that I heard them say,<br>"Dear Lord, Thy will be =
done<br>For the joys thy child will bring<br>The risk of grief we'll =
run.<p>We will shelter her with tenderness<br>We'll love her while we =
may<br>And for the happiness we've known<br>Forever grateful we'll =
stay.<p>But should thy angels call for her<br>Much sooner than we'd =
planned<br>We'll brave the grief that comes<br>And try to =
understand."<p><br>                                      --- Author =
Unknown =0A=
<br>=0A=
<br><hr size=3D7 width=3D75%><p>=0A=
<a name=3D"followups">Follow Ups:</a><br>=0A=
<ul>=0A=
</ul>=0A=
<br><hr size=3D7 width=3D75%><p>=0A=
<a name=3D"postfp">Post a Followup</a><p>=0A=
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:                        GOD's Lent Child=0A=
: I'll lend you for a little while,=0A=
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=0A=
: It may be one or two years, =0A=
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: But will you, till I call her back,=0A=
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: As a solace for your grief.=0A=
=0A=
: I cannot promise she will stay=0A=
: Since all from Earth return=0A=
: But the lessons taught below=0A=
: I want this child to learn.=0A=
=0A=
: I've looked the whole world over=0A=
: In search for teachers true,=0A=
: And from the things that crowd life's lanes,=0A=
: I have chosen you. =0A=
=0A=
: Will you give her all your love,=0A=
: Nor think the labor vain=0A=
: Nor hate me when I come to take =0A=
: This lent child back again.=0A=
=0A=
: I fancied that I heard them say,=0A=
: "Dear Lord, Thy will be done=0A=
: For the joys thy child will bring=0A=
: The risk of grief we'll run.=0A=
=0A=
: We will shelter her with tenderness=0A=
: We'll love her while we may=0A=
: And for the happiness we've known=0A=
: Forever grateful we'll stay.=0A=
=0A=
: But should thy angels call for her=0A=
: Much sooner than we'd planned=0A=
: We'll brave the grief that comes=0A=
: And try to understand."=0A=
=0A=
: =0A=
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<p>=0A=
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<center>[ <a href=3D"#followups">Follow Ups</a> ] [ <a =
href=3D"#postfp">Post Followup</a> ] [ <a =
href=3D"http://specialchild.com/bbs6/index.sht">Back to Parent to Parent =
Support Board</a> ]</center>=0A=
</body></html>=0A=

------=_NextPart_000_01BDA934.F3A34900--
=========================================================================
Date:         Tue, 7 Jul 1998 17:19:16 +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:      Plastic Surgeons
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Greetings

We now have a Dr Tristan de Chalain from Toronto at Middlemore Hospital where Amy has her craniofacial clinic appointment next week. It appears he is an advocate of osteodistraction, which has never been done in NZ. He is waiting on the equipment arriving from overseas, and plans to do the operation on a young girl with Crouzon Syndrome and has discussed the possibility with one of our NZ Network families.

Does anyone have experience with this surgeon?

Regards
Ann
NZ
=========================================================================
Date:         Tue, 7 Jul 1998 09:08:01 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      listserv archives updated
MIME-Version: 1.0
Content-Type: text/plain

The listserv archives at http://www.apert.org/archive.htm have been
updated through June 30, 1998.

Don
=========================================================================
Date:         Tue, 7 Jul 1998 21:09:50 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Sleep Studies
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello guys! Reading all the advices and interesting notes makes me
notice some things on Albita and before I begin with all my questionings
to her pediatrician I will like to share these concerns with you:

Reading regarding sleep apnea: Albita sleeps okay except that she
suddenly begin to cough so much that she awakes and had to go to the
bathroom to "vomit". This happens at least four of the seven nights of
the week. I did ask the doctor before but he told me something about
allergies. She is four now and she continues with this coughing.
Something strange is that it happens almost at the same time in the
evening (between 10 and 12 o'clock in the evening).

Does anyone of you is having or had this problem before??

I'll really appreciate any advice.

Elizabeth
=========================================================================
Date:         Tue, 7 Jul 1998 21:19:31 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Special message for Kilners
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Laurie: this is so beautiful!! Thanks for sharing it with us.

Elizabeth
=========================================================================
Date:         Tue, 7 Jul 1998 12:03:23 -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:         Judy Amerman <jamerman@UTI.COM>
Subject:      allergies
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hello everyone,

Thought I would share an allergy story with you.

When Nick was younger he was always getting a runny nose . After about a
week of this, it would be green he would wind up with either a throat or
ear infection.

This happened once when I was visiting my family in Michigan and I took
Nick to the doctor that my niece worked for and was also her pediatrician.
Dr. Shau is also a pediatric allergist. He said that at the time that Nick
was too young to be tested for allergies but he told me that Nick did have
allergies. The way that he could tell was by the purple shadows under
Nick's eyes.
He prescribed Polaramine for Nick and now I always have it on hand. This
has eliminated many doctor visits. As soon as I see the signs under the
eyes and the runny nose begins. The meds usually works.

What happens is if not treated with the allergy medicine, he will always
wind up with an infection.

Just a reminder, Lake Shelbyville get together is just around the corner on
the 24th and 25th of July. If you are going to jump on the bandwagon, now
is the time to do it.

Beth, did you get off work? Let me know your plans.

Rachel, haven't heard back from you. Are you coming?

Judy
=========================================================================
Date:         Tue, 7 Jul 1998 16:27:27 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:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Sleep Studies
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Regarding the coughing at night.....I just returned form the pediatric GI
doctor and while reviewing Jordans case history, we found that coughing spells
are directly related to his GI reflux.......certainly other things may cause
the coughing, and most kids who have reflux grow out of it by their first b-
day, but he didi say some kids don't, and sometimes the only symptom may be
coughing..while w/ some kids the only symptom is vomiting..others the only
problem are frequent mouth ulcers caused by acid in the stomach traveling up
while they are in a supine position...some kids have every symptom......may be
worth investigating....Jordan coughs a lot if his meds need to be
increased..once they are, the coughing disappears.

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Tue, 7 Jul 1998 16:26:57 -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:         Colleen Jones <coljones@PTDPROLOG.NET>
Subject:      allergies
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Judy,
We have continually questioned whether Jacob (2 yrs old) could have
allergies but the pediatrician and pulmonologist said he is too young. I
just can't believe that. He sounds like your Nick. We have a constant
runny nose that turns into some kind of infection, pneumonia right now. Is
the medicine you said only by prescription? We have tried Triaminic cold
and allergy before bed recently and do see some improvement at times. It
seems to help control some of the secretions. We would just like to see
some relief for Jacob and at this point we are open to any suggestions.
Since Jacob has pneumonia for the second time since March the doctor is now
suggesting a swallowing study, I guess to see if he is aspirating. Anyone
have this study done and what does it involve. Thanks for any input.
Colleen and gang
coljones@ptdprolog.net
=========================================================================
Date:         Tue, 7 Jul 1998 16:58:16 -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:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: allergies
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Colleen,

As far as I know a child can have allergies at 2 years old but are probably
too young to be tested. And yes, polaramine is a prescription drug, but
Nick has been taking it since he was 3.

Judy
=========================================================================
Date:         Tue, 7 Jul 1998 21:44:33 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Special message for Kilners
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Laurie,

That was absolutely beautiful. Thank you so much for sharing the poem with
us. I have been printing and saving all of the poems and sayings that people
send. Some of them I type into the computer with some decoration and then
frame them. Thank you again, even though it brought tears to my eyes. It
makes me think of the Kilners and wonder how they are doing. They are always
in my prayers and I wish them the best, always!

Lynn Thornquist
=========================================================================
Date:         Tue, 7 Jul 1998 21:56:43 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Craniofacial Program
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hello Everyone!

I just thought I would say hello and mention that we have a wonderful,
exciting trip to Craniofacial Program this Friday!! (I am saying that with
the utmost sarcasm) I don't know about everyone else, but we are usually
there for about 3-4 hours at a time. This time around we are seeing the
dentist for the first time. We ofcourse have the usual, Speech Consult and
Hearing Test, as well as the "guinea pig" session. That is what I like
calling the actual clinic visit because that is what it feels like. We sit in
the front of the room with Andrew while all the doctors look at us while Dr.
Mulliken explains the surgeries and what they intend to do in the future. I
understand that CHOB is a teaching hospital, but it feels so weird.

I do have a question for everyone. I'm sure alot of you have already seen
dentist's and orthodontist's and what I want to know is what happens at the
first visit? I would like to be a little prepared and know what to expect.
Another thing, I called our health insurance carrier and they told me that
they will pay for a consult, but if there is any surgery or tooth pulling,
that is not covered. Even if it is done through the hospital and because of
his disability. My caseworker did tell me to have the doctor submit a "pre-
registration" form to the insurance nurses who review them and see what they
say. The worst they can do it turn it down. Now I do have MassHealth through
SSDI, and I know they would pay for any surgery needed (if medically
necessary), but now that my husband and I are buying a house I am afraid we
might lose MassHealth because we will probably no longer get SSDI payments. I
am not worried about the SSDI money because they really don't give us much now
that I am back working part-time, but we might lose MassHealth. Has anyone
else experienced anything like that. For those of you with State Aide.

One more thing and then I will go. I wanted to thank everyone for their
suggestions with Andrew's temper and kicking/hitting. He has not kicked me in
about a week and the head banging had subsided mostly. He did a little bit
today, but he was over tired today, so that is to be expected. I think I
figured out our problem with Andrew and hitting Daddy just before nighttime.
The other day my husband and I were holding hands while he laid on the couch
and I sat in the chair. Andrew came over and separated our hands, meanwhile
swatting at Daddy and giving me a hug. Our EI coordinator and myself came to
the conclusion that he does not like Daddy taking my attention. Because he
swats at Rich whenever I am holding Andrew. Not just before bed. He does not
like it when we kiss. I think he is upset because Andrew wants me all to
himself. Now does that make sense to alot of you?

Well, I better get going. Sorry for all the rambling! Talk to you all very
soon.

Lynn
=========================================================================
Date:         Tue, 7 Jul 1998 22:47:43 -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:         foster <foster@ICONTECH.COM>
Subject:      Various
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

I know that some kids just get teeth later than others. Billy is 16 months
old and still not a one. Two of my daughters also were kind of slow in that
department so I am not really worried.

I have not kept up to date on the last few days E-Mails but I do want to say
welcome to any new people and I am praying for everyone on our list. Sorry
to hear that Nicole is still waiting but glad to hear everything has checked
out ok for her.

As for the allergy thing, Billy's doctor is sure he has them. It is pretty
clear on certain days when he is outside his eyes and nose starts watering
and on a really bad day the sneezing makes an apearance. It is not bad
enough to use prescription meds but he does take Benadryl and it seems to do
the trick.

I am happy to say that we will be getting Billy's PT back to work with him
in the next week or so. It seems alot of people were just as upset as we
were that she was let go and we made our thoughts known. And thanks to our
assistant administrator of our MHMR they are going to contract her privately
for the kids she has been working with and want her to continue to do so. He
will still be in the Early Intervention program for other needs. It seems
that these wonderful people do want what is best for our children.

Billy will be having his next surgery the second week of Augt to release his
pointer fingers and surgery to bring down his testicles in place because
they have not dropped down on their own. Has anyone else had this problem
with their sons? I know that is personal but I was wondering if this is
common or not. Anyway that is whats next for our guy and as always I ask for
everyone to pray for him.

Thanks
Karen(PA)
=========================================================================
Date:         Tue, 7 Jul 1998 22:56:42 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:         Beth Tolson <ETolson643@AOL.COM>
Subject:      Re: Craniofacial Program
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Lynn:

Your first visit will probably be xrays, impressions, and a general consult.
Tim sees Dr. Shusterman and Dr. Bruun. He has had a great deal of orthodontia
and more to go. We have had no luck getting our insurance to help us out with
any of the orthodontia or extractions. It has been a constant battle with
anything related to dental; just another way for them to deny a bill. We have
never been able to get SSI so I don't know how that works. Tim will be 18 in
a year and a half and I am planning on his being eligible for SSI at that
time, especially for the health insurance. His social worker at school feels
he will have no problem getting SSI. I hope she is right!!!

Good luck Friday and say hello to our friends at the craniofacial clinic!

Beth Tolson
=========================================================================
Date:         Tue, 7 Jul 1998 20:47:22 -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:      Re: Special message for Kilners
MIME-Version: 1.0
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Hello To all of you!!!

Sorry I haven't written in a while. I have been really busy! The poem Don't
Quit is really neat! I love it! On July 22, I go to have my wisdom teeth
out. Ahh! That will be number 36 on the surgery list! Well, I better go!
Talk to ya later!
Amanda

-----Original Message-----
From: Lynn Thornquist <Thornq@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, July 07, 1998 6:46 PM
Subject: Re: Special message for Kilners

>Laurie,
>
>That was absolutely beautiful. Thank you so much for sharing the poem with
>us. I have been printing and saving all of the poems and sayings that
people
>send. Some of them I type into the computer with some decoration and then
>frame them. Thank you again, even though it brought tears to my eyes. It
>makes me think of the Kilners and wonder how they are doing. They are
always
>in my prayers and I wish them the best, always!
>
>Lynn Thornquist
>