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Karen,
Wow! Your story sounded so much like
what happened to us only 4 =
months ago! We too were told at first that Saige had Downs, webbed
=
hands & feet, clubbed feet, a detatched esophagus, and they didn't
know =
her life expectancy! It wasn't until they air-ambulanced us to
Denver =
that they told us Aperts. We were relieved to hear Aperts and
read =
about normal intelligence! =20
We also had lots of problems with Saige and
breathing problems and =
lots and lots of gas. We have switched to Isomil Soy Formula
and one of =
our nurses said that some children cannot handle all of the extra iron
=
and get gassy. =20
Have you checked with the Denver county Medicaid.
We qualified =
automatically for staying in the hospital over 30 days. Presently,
we =
are trying to transfer into Garfield county. There is also a
branch of =
Medicaid in which you don't have to be dirt-poor to qualify.
They are =
suppose to help with some of the travel and lodging expenses and we
are =
in the process of getting that set-up for our Dallas trips. Also,
some =
local corporations will sometimes help sponsor children with medical
=
needs. For example, Alpine Banks were going to fly us to and
from =
Denver for surgeries in the beginning. Anyways, I could go on
and on, =
but I'll just give you a call tomorrow. I can't wait to meet
you by =
phone.=20
April Blotske (Saige's Mom)
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<DIV><FONT color=3D#000080 face=3D""><FONT =
face=3DHeather>Karen,</FONT></FONT><FONT=20
face=3DHeather></FONT></DIV>
<DIV><FONT color=3D#000080 face=3D""><FONT =
face=3DHeather> =20
Wow! Your story sounded so much like what happened to us
only 4 =
months=20
ago! We too were told at first that Saige had Downs, webbed
hands =
&=20
feet, clubbed feet, a detatched esophagus, and they didn't know her
life =
expectancy! It wasn't until they air-ambulanced us to Denver
that =
they=20
told us Aperts. We were relieved to hear Aperts and read
about =
normal=20
intelligence! </FONT></FONT></DIV>
<DIV><FONT color=3D#000080 face=3D""><FONT =
face=3DHeather> We=20
also had lots of problems with Saige and breathing problems and lots
and =
lots of=20
gas. We have switched to Isomil Soy Formula and one of our
nurses =
said=20
that some children cannot handle all of the extra iron and get =
gassy. =20
</FONT></FONT></DIV>
<DIV><FONT color=3D#000080 face=3D""><FONT =
face=3DHeather> =20
Have you checked with the Denver county Medicaid. We qualified=20
automatically for staying in the hospital over 30 days. Presently,
=
we are=20
trying to transfer into Garfield county. There is also a
branch of =
Medicaid in which you don't have to be dirt-poor to qualify.
They =
are=20
suppose to help with some of the travel and lodging expenses and we
are =
in the=20
process of getting that set-up for our Dallas trips. Also,
some =
local=20
corporations will sometimes help sponsor children with medical =
needs. For=20
example, Alpine Banks were going to fly us to and from Denver for =
surgeries in=20
the beginning. Anyways, I could go on and on, but I'll just
give =
you a=20
call tomorrow. I can't wait to meet you by phone. =
</FONT></FONT><FONT=20
face=3DHeather></FONT></DIV>
<DIV><FONT color=3D#000080 face=3DHeather>
=
April=20
Blotske (Saige's Mom)</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Mon, 22 Mar 1999
06:19:33 -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: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Kelly Spadine
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Kelly,
The before and after pictures I sent you on February 20th were returned
to
me Saturday March 20th. They have been in the dead mail a long
time. The
envelope says "Please notify correspondents of correct zip code".
I must
have copies it down wrong. Could you please send your address
again and I
will mail it back out.
Sorry for the delay, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Mon, 22 Mar 1999
10:11:21 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Thank you, all
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi guys,
Ruth Contreras here, mom to Kris (15 y/o) for those of you who are new,
WELCOME!!! It's great to hear from you...please don't feel alone...I
say
that from experience, For many years we felt so alone, Thank God for
family
and friends....I read your mail and say...Yep...been there...done that...
To Michael (Talitha's dad) First, I want to thank you for all
the info on
the RED system...I made a copy of all your mail and have read and re-read
them...(You and others that have commented on it)...Question....What
do you
mean when you say....a definite date for the "red and Leforte lll...."....I
am totally confused here...I thought one excluded the other?? Am I
wrong?
I talked to Kris' Dr. last week..Dr. Stal here at Texas Childrens
Hospital...And he seemed to think that this surgery would definitley
be
good for Kris....however...you had said that it was not "recommended"
for
older kids... You can see how frustrated and confused I am...with so
much
info..to read and to decide on!!!!!
Please answer this.......she (Talitha) is having both done? And
how? And
I completely understand your lingo....I am too!!!
Kris went back to school today...she had been out for her last hand
surgery...she said it felt like the first day of school...she was a
bundle
of nerves!!
Talk to you later, back to work!!
----------
> From: Michael Sharrow <msharrow@CAMALOTT.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Thank you, all
> Date: Thursday, March 18, 1999 5:37 PM
>
> Just wanted to thank everyone for keeping us in your prayers.....it
worked!
> Talitha is doing great after her ear surgery. I almost cried
when she
asked
> me to turn down the TV last night! (tears of joy)....We got a definite
date
> for the RED System and LeForte III surgery yesterday....April 19th...I'm
> scared as hell (pardon the lingo)...just don't know what we'd do
without
> friends like y'all! When my lil one looks at me, I feel like
balling....but
> the next minute, she gives me a look of "I'm ok, dad", "Everything
will
be
> just fine". She's soo cool....I'm a basket case...but, I try
to supress
it
> as much as possible in front of her...I'll never forget her courage...As
> silly as it sounds...I'm leaning on her...and she's the one that
has to
go
> through all this.....sheesh....I'm such a wimp...Well....thanks for
letting
> me let off some weight....Anyone in surgery, post or pre....we wish
you
the
> best...keep your head up!
> Your friend, Michael (Talitha's dad)
=========================================================================
Date: Mon, 22 Mar 1999
11:31:12 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman
<jamerman@UTI.COM>
Subject: fun
MIME-Version: 1.0
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boundary="----=_NextPart_000_000D_01BE7457.7E2B5B60"
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Hi,
Just wanted everyone that was on the chat last night to know that I
had =
a great time and to thank you all. Chatting in this fashion is
=
completely new to me. I will definitely be there again next week!
Don, thanks for all these great things that you have done.
Dorie, Happy to see that you are home safe and sound.
Amy, are you still with us? I miss you.
Judy
jamerman@uti.com
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<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type><BASE=20
href=3D"file://C:\Program Files\Common Files\Microsoft =
Shared\Stationery\">
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BACKGROUND-COLOR: #ffffff;
BACKGROUND-POSITION: left top; =
BACKGROUND-REPEAT: repeat-y; COLOR: #ff9900; FONT-FAMILY: "Comic Sans
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<DIV>Hi,</DIV>
<DIV>Just wanted everyone that was on the chat last night to know
that I =
had a=20
great time and to thank you all. Chatting in this fashion
is =
completely=20
new to me. I will definitely be there again next week!</DIV>
<DIV> </DIV>
<DIV>Don, thanks for all these great things that you have done.</DIV>
<DIV> </DIV>
<DIV>Dorie, Happy to see that you are home safe and sound.</DIV>
<DIV> </DIV>
<DIV>Amy, are you still with us? I miss you.</DIV>
<DIV> </DIV>
<DIV>Judy</DIV>
<DIV><A =
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></DIV></BODY></HTML>=
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MnyNkjcm/DOPFwfiMn8sXYUJAAA7
------=_NextPart_000_000D_01BE7457.7E2B5B60--
=========================================================================
Date: Mon, 22 Mar 1999
12:46:22 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi everyone. I have a call in to the Crown Reef at Myrtle Beach
about our
"Apert Conference" in June. I am hoping that we will get better
rates even
though some of us have already made our reservations!!!! I also
called our
NBC station here in Columbia (WIS-TV) and they are going to do a story
on
Apert and talk about our Conference and our web-site. I wanted
them to come
to Myrtle Beach, but they said they didn't have it in their budget
to go there
for the story, so they will come to our house and to Teeter's school.
Maybe
we can find more families that don't have computers in our viewing
area! I
really enjoyed being on Apert Chat last night and look forward to doing
it
again next Sunday night. I will keep everyone posted if we can
get better
rates!!!
Love to all,
Cathie
=========================================================================
Date: Mon, 22 Mar 1999
13:56:09 -0500
Reply-To: Information exchange and Internet
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: New easy instructions for signing
onto Apert Chat
MIME-Version: 1.0
Content-Type: text/plain
I've made a new page, which branches off of Teeter's Page. It
has the
links necessary to sign up with Apert Chat. The web page is:
http://www.apert.org/chat.htm
We had a great time last night with up to 7 members in the room at once!
The Community has currently 31 members, and just keeps growing.....
Don
=========================================================================
Date: Mon, 22 Mar 1999
16:06:03 EST
Reply-To: Information exchange and Internet
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi everyone, I just heard from the Crown Reef hotel and they said that
they
can not decrease our rates, because it is their tourist season.
But she said
that the hotel next door to the Crown Reef is their sister hotel and
that
their rates are much lower, because they do not have all the amenities
that
the Crown Reef does. Not all the rooms are ocean front and not
that many
pools, but everyone can come and use the pool at the Crown and all
the
facilities, since it is a sister hotel. The name of the other
hotel is
Tropical Seas the phone number is 1-800-438-5015.
They also recomended
another hotel that is at 24th avenue south across the street from the
beach
(Crown Reef is at 29th ave south) called Sea Banks Motor Inn.
They have
kitchens, but not a lot of amenities. The number there is 1-848-448-2434.
I
hope some of you will check into the rates at these other hotels and
try to
come to Myrtle Beach with us.
Cathie
=========================================================================
Date: Mon, 22 Mar 1999
15:57:52 -0800
Reply-To: Information exchange and Internet
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From: rreed <rreed@CABLEONE.NET>
Subject: Welcome to the family!
the Pittmans
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Karin, My name is Maxine and Iam 44 years old and I have Aperts.
Wow what
a story. My story is similar to yours. When I was born back in 1954
they
told my mom and dad that I wouldn't walk and talk, and that They should
put
me in an institution. Well at the time the institutions were full,So
my
parents brought me home to my older sister and brother. While I was
home I
started doing all the normal stuff like crawling,walking and talking.
So my
parents decided to keep me. So I have had all the hand surgerys. And
when I
was 21 I had my face lift surgery ( thats what I call it but Iam not
sure
what its called). When I was little Shiners Hospitals did alot of my
surgeries, then when I got older Crippled Chrildrens organizations
did my
face. There are organizations out there that will help but I don't
know of
any but the ones I have said. Like I said earlier Iam now 44 years
old and
Iam married and have a healthy 15 year old daughter. I am not going
to say
that it will be easy raising an Aperts child but, the joys of having
little
Mason will out number the pains that are ahead. There is hope. And
there is
also friends like this Aperts listsever group that are there when you
need
someone to talk to. Things will get better. If you have any questions
I'll
try and help you or if you just need to talk to someone, just E-mail
privately at rreed@cableone.net or call me at (209)524-2141. Well I
better
close. Oh yea! Welcome to this great group of friends. You'll find
this a
great group. I sure have. Take Care. Maxine Reed in sunny Modesto Calif.
=========================================================================
Date: Mon, 22 Mar 1999
20:02:24 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: BBarn60368@AOL.COM
Subject: Re: Hi Pittmans!--Our Story
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hey Karin and family:
Welcome to the listserv. We are so glad to have you with us.
I have a
daughter, Shirley, with Apert. She is 5 years old. I, too
have shared a lot
of the feelings that you wrote of in your story. Your feelings
change and go
through so many different stages. My main feeling at Shirley's
birth was
overwhelming disappointment. At her first birthday, I felt extreme
guilt
because I felt she was robbed of the joy, at her birth, even though
she was
only a baby at the time. Her birth led me to a wonderful relationship
with
God right off. On her fourth birthday I wrote a story about her
birth which
became my testimony. It has been read in two different churches
and printed
in an advent booklet at Christmas. About a month ago, I got an
intense
feeling and it was: I truly feel so very honored that God picked me
to be
Shirley's mother. I love her so deeply.
One of the feelings, that I left out, was that, when I got home from
the
hospital after Shirley's birth, I felt that I did not have my baby.
I mean I
wasn't crazy, I knew I birthed my baby, I just felt like I didn't.
The reason
I felt this way was because I didn't birth the perfect little baby
that I had
carried in my mind for the previous 9 months. I really had to
grieve the
death of this child while I was getting to know my "new" baby.
Anybody else
have this feeling?
Anyway, welcome to a family of friends who care and share so many of
the same
ups and downs. And congratulations on Mason's birth. He
will bring you so
much joy.
Much love and may you feel the presence of God in your lives,
Alice in Orlando, Florida
=========================================================================
Date: Mon, 22 Mar 1999
20:04:32 -0800
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Hi Pittmans!--Our Story
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
The reason
>I felt this way was because I didn't birth the perfect little baby
that I
had
>carried in my mind for the previous 9 months. I really had to
grieve the
>death of this child while I was getting to know my "new" baby.
Anybody
else
>have this feeling?
Yes! In retrospect, it is kind of a "surreal" experience, don't
you think?
I remember looking into her tiny face and this overwhelming sad feeling
would often bring tears to my eyes. It took a long while to get
over this.
I'm thankful my husband was able to take charge of the immediate medical
needs of our Apert child and his initial acceptance/love of her was
my
bridge back to reality. Postpartum blues and hormonal changes
can also be
a factor. For me, it was a process of questions (whys and
hows),
collecting data about Aperts, and searching deep inside my soul.
I chose to
love baby Roxy long before I got to know her. And now that I
know her, I
love her all the more. I leave the whys and hows to a Higher
Authority
(God).
Sincerely,
Rose
La Mirada, CA
=========================================================================
Date: Mon, 22 Mar 1999
20:09:29 -0800
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Kelly Spadine
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
> Hi Dori,
Here is my address:
Kelly Spadini
909 Woodlake Lane
Roseville, Ca 95661
Thanks again for sending those pictures to me. I really appreciate it.
Kelly
=========================================================================
Date: Tue, 23 Mar 1999
08:00:29 EST
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: pictures
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Don,
Having some trouble uploading pics on the Excite page.....it talks of
a browse
button????? Where is that????? I am a novice at this picture thing,
but I'll
get it soon!!! Hey, I got the photo album up !!!!
Thanks
Jennifer Graham
=========================================================================
Date: Tue, 23 Mar 1999
08:35:27 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: profiles
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0005_01BE7508.1B274860"
This is a multi-part message in MIME format.
------=_NextPart_000_0005_01BE7508.1B274860
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
I was just visiting the apert chat and seen that there are now 37 =
members signed up. One problem I did see was that when you clicked
on a =
member name to see the profile of who is behind a name you do not =
recognize, it just shows the member name. I myself was guilty
and =
amended the problem by editing my profile. by doing this, when
you see =
the member list and click on Nicksmom2, it now shows who is Nicksmom2
=
actually is. There are some ther that I have no clue who you
could be. =
Just thought mentioning this could help us all know who is who.
jamerman@uti.com
------=_NextPart_000_0005_01BE7508.1B274860
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>I was just visiting the apert
chat and =
seen that=20
there are now 37 members signed up. One problem I did see
was that =
when=20
you clicked on a member name to see the profile of who is behind a
name =
you do=20
not recognize, it just shows the member name. I myself was
guilty =
and=20
amended the problem by editing my profile. by doing this,
when you =
see the=20
member list and click on Nicksmom2, it now shows who is Nicksmom2 =
actually=20
is. There are some ther that I have no clue who you could
=
be. =20
</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Just thought mentioning this
could help =
us all know=20
who is who.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_0005_01BE7508.1B274860--
=========================================================================
Date: Tue, 23 Mar 1999
12:03:58 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: pictures
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
oops...this was sppose to be sent directly to Don...didn't want everyone
else
to know how much trouble I seem to be having at such an easy task!!!!
Sorry
Jenn (Tampa/St. Pete)
=========================================================================
Date: Tue, 23 Mar 1999
12:06:43 -0500
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Hi Pittmans!--Our Story
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Michael and Karin Pittman:
It all is happening very fast for you right now, we remember. Just take
one
day at a time.
Michelle is eight(going on twelve) and in second grade. She has many
friends, good self esteem and since she was a baby she has been able
to do
things that some doctors and nurses said "she probably could'nt do".
As you
already know the surgeries are no fun at all, but children bounce back
so
fast.
Our prayers are with you. Welcome to the listserve family.
Ryan and Martha Bradley
=========================================================================
Date: Tue, 23 Mar 1999
12:06:44 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: teeth
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Stephanie:
Martha is at Michelles' school this morning, it's my turn to clean out
our
E-Mail. I found a Chrisman on our map, just south of Danville? Anyway,
Algonquin is a NW suburb of Chicago about 20 mi south of the IL/WI
border.
Ryan Bradley
=========================================================================
Date: Tue, 23 Mar 1999
12:15:23 -0600
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: teeth
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi,
Just seen your message to Stephanie and that reminded me that I have
to take
Nick to his orthodonist this Friday at 10:30.
The Dr. is in Vernon Hills. Are you close by. The Dr. is
at the mall
there. If so, would you like to meet for lunch. There is
a Ruby Tuesday's
at the mall. We could probably do lunch at around 11:00 or shortly
thereafter. The sooner the better for me so I can try to avoid
any rush
hour traffic. Let me know.
Judy Amerman
----- Original Message -----
From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
To: <APERT@LISTSERV.AOL.COM>
Sent: Tuesday, March 23, 1999 11:06 AM
Subject: Re: teeth
> Stephanie:
>
> Martha is at Michelles' school this morning, it's my turn to clean
out our
> E-Mail. I found a Chrisman on our map, just south of Danville? Anyway,
> Algonquin is a NW suburb of Chicago about 20 mi south of the IL/WI
border.
>
> Ryan Bradley
>
=========================================================================
Date: Tue, 23 Mar 1999
16:35:38 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: carol graves
<tcgraves@BELLSOUTH.NET>
Subject: RED Procedure
Nicholas went to the craniofacial dr yesterday and I had planned on
asking him about the RED Procedure but before I got the chance he started
telling me about it and saying that Nicholas was a perfect candidate for
it. He was very surprised that I had heard of it and knew a little
(thanks Michael for the info and pic). I was so thankful that I had read
and heard about it before hand. We go back on April 5th and will
get a surgery date then.
Also, Nicholas will be having hand surgery to correct the lapping over
of his fingers... we will be going to South Carolina Shriners .. admit
date is May 6th and surgery date May 10th...
Will keep you posted on how things go.
Carol Graves
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Date: Tue, 23 Mar 1999
16:54:51 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: teeth
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Hi Judy:
Just wanted to let you know we are about 1 hour from Vernon Hills and
if I
didn't have to babysit, we would have liked getting together.
Maybe
another time, unless you would like to drive up to Algonquin and have
lunch
at our house.
Hope the appointment goes well.
Ryan & Martha Bradley
=========================================================================
Date: Wed, 24 Mar 1999
07:59:35 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: Update on Adoption down
under.
Comments: cc: Howard & Ann <howrdnan@ihug.co.nz>
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi everyone,
I just thought I would thank everyone for your welcomes(few weeks ago
now!!) to our family. We are tring to adopt a 12 month old in Australia
with Apert.
So far so good, all our paper work is in and we are hopeful, thanks
for all
the great advice we've recived, maily from Ann and Howard and Richard.
You
have made our decision as to going ahead so much easier.
Not that is was that hard.........is it really possible to bond to
a
medical report!!!!hehehehhe.
Anyway we hope all will go quickly now, but sometimes goverment departments
take there time about things. This little one is safe at the moment
in
fostercare so I don't think there in any big hurry, its just us that
can't
wait.
I do have a question though, how many of you got second and third opinions,
we will have to go to another state to do this, and we had some good
refurals to some Dr interstate. I really think we will need to start
from
the begining if she becomes ours. I don't like some of the going to
be done
soon statements on the report. Will fill you all in more when I can
legally
call her mine (IF).
We are hopefull that the adoption will go ahead, but my poor hubby
is a
little over weight, and the regulations on that here are crazy, so
keep
your fingers and toes crossed.
Did any of the Aussie or Kiwi's on the list see the good medicine
story
last week on the show. I missed it, but my sister inlaw watched it,
it was
about a mid face op. The little girl looked great after the surgery,
and
guess who did it Ann, Dr David David in adelaide, I'm trying to chase
a
tape of the show. I'm always missing the good stuff on tellyhmmmmmmmm.
Any way hope we can to join the photo exchange in the near future,
and
thanks for all your support,
Nicki and family, queensland Australia.
=========================================================================
Date: Wed, 24 Mar 1999
00:37:47 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi to the Pittman's and Mason.
My daughter Samantha was born four months ago. I'm still
fairly new to all
this myself, but advise I got early on and am so happy I followed was
to take
a lot of pictures. I don't know why people told me that, but
what I found so
important was that for us it started the healing process.
I had come to the
hospital with tons of film but after the first shots in the delivery
room
everything turned so bad so quickly that we never picked up the camera
again
for two days. Then my bosses wife came in and took three rolls
of pictures
and came back later with them developed. We started to pass them
out to
family and friends and Samantha became real and close to everyone.
Then I
started to take my own. I now look back on just four months
ago at her early
days and love my little girls face at birth and her early months.
If my
bosses wife didn't do that we might of put it off because of the shock.
The other important thing was at delivery I learned that my doctor and
then
the whole hospital really had no idea what was wrong with my baby.
Finally
they got a word "Aperts" and gave me a dark copy of a very old medical
journal
article about Aperts. That was all I had to go by and them.
I learned then
that I didn't do a good job at being my own advocate during pregnancy,
trusting everyone, even when I suspected my ultrasound pictures to
be
different--that I would be my daughters advocate and learn everything
I can
before seeing each doctor. And this wonderful listserv
will provide that.
Welcome to this wonderful board. I'll send you a picture of Samantha
as soon
as I get copies back.
Love, Lisa Guyette, Oxnard California
=========================================================================
Date: Wed, 24 Mar 1999
10:13:44 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Copperhd87@AOL.COM
Subject: Amen to Lisa!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Lisa,
I think what you said about being your daughter's advocate is the best
advice
anyone could give to any parent, but especially new parents facing
difficulties. When the times would give rough with Mitchell and
I would feel
so helpless, remembering that I was the only mother he had really helped.
He
was counting on me, and no one else could advocate for him like I could.
After having three children, I realize that although you do love your
children
when they are born, it takes a while to get to know them to really
fall in
deep, passionate love with them. I hope brand new parents facing
difficulties
realize that and don't blame any mixed feelings they may have on the
difficulties. For those new to the listserver, I have two older
children with
only the typical difficulties and a two-year-old that was born with
only
craniosynostosis, not Aperts.
I mostly lurk these days but continue to be grateful for your support.
Though
I don't always contribute, please know that I am continuing to follow
your
progress and pray for you daily. Welcome to all the new families!
Resa
=========================================================================
Date: Wed, 24 Mar 1999
17:30:00 EST
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From: BBarn60368@AOL.COM
Subject: Re: Lisa, Me Too!
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Lisa:
You are so right! We did the same thing. I have a whopping
total of 2
pictures of my new born in the hospital and since that time, I have
come to
feel that one day I am going to be there, when someone else births
a baby with
any kind of difference and I have made a promise, to myself, that I
will take
tons of pictures, even if I can find no words or any other way to help.
The
parents will want every one of them after they get home and get over
their
initial shock.
And I, too felt something was different when I looked at my daughter's
ultrasound, but said nothing. In retrospect, I'm glad I didn't,
because we,
too got a horrible and much worse description of Apert, right after
her birth,
than the way things turned out.
And you are so right about being an advocate for our children.
Shirley is 5
yrs. and I have found you have to fight the insurance companies for
payment of
bills, you have to fight the teachers in the school systems to get
them not to
assume our children are retarded and thus expect less from them or
try to keep
them in special programs for years, you have to fight the people who
are so
cruel and unfeeling about what they say to, or about, our children
and so on
and so on.
God bless,
Alice in Orlando, Florida
=========================================================================
Date: Wed, 24 Mar 1999
16:49:59 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Carol
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Just wanted to say I'm glad things seem to be going in the right direction
for you Carol. We're scheduled for April 19th...remind me around
that time
to send you before and during pics, and I'll be glad to. But
I need to be
reminded...(getting old ya know).
Michael (Talitha's dad)
=========================================================================
Date: Wed, 24 Mar 1999
17:51:56 -0500
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From: HAROLD E TYRE
<HETSRT@PRODIGY.NET>
Subject: HALT3
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Hi Judy and others who may be wondering who halt3 is on the excite apert
chat. We are Carmen Rae's grandparents Sherry and Hal Tyre in
Augusta, Ga.
We haven't been on to chat yet but will. Welcome to the
new families.
=========================================================================
Date: Wed, 24 Mar 1999
18:22:31 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: FYI
MIME-Version: 1.0
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Hi!
It's been a while since I heard from you. I thought I sent a message
out
to you, but it may have been just a thought.
Life seems to have slowed down a bit since school wrapped up.
Although
things are tense at work. We are anticipating our state inspection
(unannounced) any time. We went though a couple of months frantically
getting things in order, now we are waiting and waiting.
Are you going to Myrtle Beach? I wish I could go, but I got an
offer for
a plane ticket to Florida where my grandmother, aunt and uncle live.
I
couldn't pass up that offer! I love Florida! Not to mention
my family!
How's Emily? Have I ever told you I love her name?
Well, my Coal has lost interest in the buttons on my shirt and is now
trying to remove the pile of papers on my desk, one at a time.
Hope all
is well there.
Joanne
=========================================================================
Date: Wed, 24 Mar 1999
20:11:06 -0500
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From: foster <foster@ICONTECH.COM>
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Hi, I thought I would write to let you all know that Billy is get stronger
everyday. He still has some inflamation of his Pancreas and has to
have
blood work done every three weeks to keep a check on it. Still not
sure why
his Pancreas was messed up by the stomache virus he had.
I wanted to say welcome to all of the new people and to say I am happy
to
hear that all the surgeries have been going so well and that the kids
are
all recovering without any problems.
Billy will not be able to continue his surgeries for a few month because
of
this pancreas stuff so we are using this time to catch up on other
appointments. He is going for a cranial appointment this Friday.
I also wanted to tell some of the people with younger kids who are so
over
whelmed by all of the appointment and surgeries and anyone else who
may not
have thought of it, that getting copies of hospital records are a really
good idea.We request copies every few surgeries and keep them all together.
We read them over and find out little things which we may not know
about and
read every detail of his surgeries and just what went on during them.
I know
some of the stuff is upsetting to read and I am not suggesting you
have to
read them if it does upset you. We can go back and read anything or
check on
things latter on that we would have to call and ask about. You can
also make
copies and have them for other doctors you may need to use and then
they can
have all the information they need right then and there. Sometimes
it takes
months for hospitals to forward these record to doctors. We also have
paid
to have copies of Billy's Ct Scans copied and we also keep them for
future
references. Our local hospital copies them and does not charge for
them but
we only had to pay ten dollars for each of the ones taken at Hershey.
This
helped alot when we had to get a second and third opinion on the shunt
deal.
We had the scans and we just took then up to the hospital and the doctors
did not have to go through a bunch of stuff to get them and read them.
The
medical records you are not charged for so it is not a exspense.
Anyway I wanted to mention this so others will know it is possible
to have
records of pretty much everything.
I am also happy to hear about the picture exchange. I can not wait to
get
started.
Well, I'll say goodbye for now.
Karen(PA)
=========================================================================
Date: Wed, 24 Mar 1999
20:14:58 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
Mime-Version: 1.0
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HI LISA, GOT YOUR PIC OF SAMANTHA AND WAS THRILLED TO GET IT.ISENT YOU
A
COUPLE THIS MORNING,HOPE YOU LIKE THEM WILL SEND MORE LATER. THANKS
AGAIN SHE
SURE IS A DOLL BABY.YOUR NEW FRIEND MARILYN
=========================================================================
Date: Wed, 24 Mar 1999
20:38:06 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: FYI
MIME-Version: 1.0
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Sorry Janine, your message was sent to the crowd. Tomorrow's local
headlines are going to read: 34 year old lost her mind!
Joanne, preoccupied, but still here!
=========================================================================
Date: Wed, 24 Mar 1999
21:45:55 EST
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From: GSieb91515@AOL.COM
Subject: Re: Lisa, Me Too!
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Lisa and Alice--
We brought our camera to the OR expecting to take a photo when our baby
boy
was being born. However, my epidural didn't take and I was clutching
George's
hand so tight that neither one of us could take a photo. Right
before
Jonathan was born and they put me out, the anesthesiologist (sp) asked
if we
wanted him to take a photo. Of course the answer was yes.
After the news was
broken to me when I woke up and we were in our room deciding how to
handle the
situation (should he stay in that hospital or be sent to the medical
center)
my daughter and 2 dear friends came to be with us. I didn't realize
it at the
time but 1 friend took a whole roll of film. A few months later
I was at
Eckerds getting film developed and decided to preview them before I
left the
store. Well, low and behold there were lots of photos of our
precious new
born and my older daughter with us. I was standing there crying
like crazy
and praising my friend for taking these photos. I will be forever
grateful to
her.
Like you guys already said, there is no better advocate for our
children than
us.
Brenda
Houston
=========================================================================
Date: Thu, 25 Mar 1999
14:54:34 +1100
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From: Carol <carolh@HOTKEY.NET.AU>
Subject: Re: Eyes
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Hi,
Saw the eye surgeon a few weeks ago and he told us about an operation
for Ashleighs eye muscles to help with her eyes going in all
directions. This would take about 1 1/2 hours and make the appearance
of her eyes a little better. Has anyone had this done and can
you tell
me a little more about it before we decide to go ahead with it or not.
This also means that when she has her midface done in the years ahead
it
would throw this all out again Im assuming so.
Carol
=========================================================================
Date: Wed, 24 Mar 1999
22:02:45 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: FYI
Mime-Version: 1.0
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Dear Joanne. I empathise. Of all the things I've lost, I
miss my mind the
most.
Pat in Calgary
>Sorry Janine, your message was sent to the crowd. Tomorrow's
local
>headlines are going to read: 34 year old lost her mind!
>
>Joanne, preoccupied, but still here!
>
=========================================================================
Date: Thu, 25 Mar 1999
00:12:08 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Support Group and Book
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My mother and I as well as a good friend, took Samantha to her first
cranial
facial support group. It really was a wonderful experience.
I heard about it
and talked to the head of it my first week home with Samantha.
But I found
every excuse to go. Then like I mentioned before I was watching
the Rosie O'
Donnel show and a teenager with a cranial facial syndrome was on.
He was so
inspiring saying he just wished people wouldn't judge people by their
looks.
The show made me cry. I thought I needed to have my daughter
around those
kind of people. Then his aunt spoke. His mom walked out
on him as a baby
because of his looks and so did his dad. His aunt raised him.
I thought she
is someone I need to be around. Then I realized the group was
the one I was
supposed to be a. They showed footage. Well we went and
that boy Ariel was
talking about his Rosie experience and his Aunt asked to hold
Samantha and
rocked her most of the night. I kept thinking "Wow it's them."
The group
isn't to discuss latest surgeries it's just to be with others.
Because I'm home alot now I also have a Oprah tip. (pathetic huh?)
They had
a show about a book called "Jewell," it's so far wonderful.
It's about a
woman who gives birth to a disabled child. She is told to put
it in a
institution. The child will never do anything and will die by
two. She says
no and her whole family devotes everything to this child. I am
now at five
years old and she's walking. It's written by Brett Lott.
I love it. But I
don't know the ending yet so if it's sad don't blame me.
Love, Lisa
=========================================================================
Date: Thu, 25 Mar 1999
22:02:19 -0500
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Just wondering.
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Hi,
I was just wondering if any of your babies where given breast milk,
I
gather that breast feeding was out due to breathing and swollowing
problems, but was it suggested that these babies could benefit from
breast
milk, Just wondering, as I'm studying to become a lactation consultant
and
one of my pet intresets is, the benefits of breastmilk on kids with
special
needs and medical problems.
Nicki, Australia, awaiting news of our adoption.
=========================================================================
Date: Thu, 25 Mar 1999
08:21:26 -0500
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From: Christopher.Kilner@USPTO.GOV
Subject: Re: Just wondering.
MIME-Version: 1.0
Content-Type: text/plain
Nicki,
Our doctors had Ceci on an IV due to fears of aspiration, but the nurses
noticed how well she sucked a rubber nipple and "accidentally" let
us
bottle-feed her some pumped breast milk...she did great and was being
breast-fed by the end of the day!
Chris Kilner
> -----Original Message-----
> From: zieth@HOTNET.COM.AU [SMTP:zieth@HOTNET.COM.AU]
> Sent: Thursday, March 25, 1999 10:02 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Just wondering.
>
> Hi,
> I was just wondering if any of your babies where given breast milk,
I
> gather that breast feeding was out due to breathing and swollowing
> problems, but was it suggested that these babies could benefit from
breast
> milk, Just wondering, as I'm studying to become a lactation consultant
and
> one of my pet intresets is, the benefits of breastmilk on kids with
> special
> needs and medical problems.
>
> Nicki, Australia, awaiting news of our adoption.
=========================================================================
Date: Thu, 25 Mar 1999
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Eyes
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Hi Carol,
My name is Sheila and my daughter's name is Paige. She is 4 years
old now and
had her strabismus surgery [eye's going in different directions] at
around the
age of 2 years old. I was a very sucessful surgery and to this day
nothing has
changed. I can't say if the mid-face advancement surgery changes
the status
of the eyes, but I believe it is a surgery worth doing.
Best wishes,
Sheila
=========================================================================
Date: Thu, 25 Mar 1999
14:07:22 EST
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
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Lisa,
I also thought the ultrasound pictures looked different, but I had
never seen
ultrasound pictures before, so I trusted what the doctor said.
Thanks for the advice about taking pictures. We haven't taken
any since the
hospital and he's 6 weeks old! I think it's because he
has those tubes in
his nose that make him look funny. He's very cute otherwise.
I'm looking forward to seeing pictures of your daughter Samantha!
Sincerely,
Karin Pittman (Mason's mom)
=========================================================================
Date: Thu, 25 Mar 1999
14:36:09 EST
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
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Alice in Orlando,
Thank you for your response to our story. I wish there were some
way to
prepare mothers for the possibility of a special baby. We thought
Mason would
be an athlete, a pianist, or a singer. We still have hope.
Where there's a
will, there's a way. We just have to provide him with the will
and he'll find
a way with God's help.
Sincerely,
Karin Pittman (Mason's mom)
=========================================================================
Date: Thu, 25 Mar 1999
15:04:06 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: This -n- that
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone -
I'm pleased to announce that 43 of you have joined the Apert Chat
community on Excite - and that is exciting! Also there are 44
names on
the picture exchange list.
I'll be out of the pffice on Friday, so I won't be responding to mail
until Monday. I'll be available at home this weekend (it's a
Dad and
Teeter weekend, Cat's working!) and I'll check the mail at
catndon@aol.com or you can leave me messages on Apert Chat.
Our local NBC station will be doing a story on Teeter and the Internet
sites in May - who knows where it will go from there!
Stay tuned...........
Love to you all, Don
=========================================================================
Date: Thu, 25 Mar 1999
17:17:07 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Eyes
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Carol:
When Michelle was 4 she had surgery for strabismus(sp?), when she would
look down her eyes would cross. The procedure consisted of moving and
reattaching some eye muscles. The procedure was out-patient and was
about
one hour, and two hours for recovery before she could go home. She
had
black and blue eyes for about a week.
This improved her depth perception, espicially when going down steps.
She
was constantly missing steps and taking spills, especially on steps
that
were poorly lit or had low contrast.
I don't know what impact a midface would have on this.
Ryan Bradley
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Date: Thu, 25 Mar 1999
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Just wondering.
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Nicki:
When Michelle was in the NICU a nurse had mentioned Michelle would'nt
be
able to breastfeed or use a bottle because of her high palate. However,
she
was able to do both.
Michelle did not have any breathing difficulties at birth. She received
breast milk for approx. 4 months.
Ryan Bradley
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Date: Thu, 25 Mar 1999
18:36:16 EST
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From: BBarn60368@AOL.COM
Subject: Re: Just wondering.
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Nicki:
Yes, Shirley was breast fed. No problems.
Alice in Orlando, Fl.
=========================================================================
Date: Thu, 25 Mar 1999
18:52:48 EST
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From: BBarn60368@AOL.COM
Subject: Re: Music
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Karin:
Don't give up your hopes for Mason to be involved in music. It
is a common
characteristic of our kids. They love music. And, yes,
some of them, not
only play the piano, but also teach piano. My Shirley is almost
6 and she
loves all types of musical instruments and begs for all of them for
Christmas,
Birthday, etc. Her grandmother promised her the family organ
because she is
the only grandchild, out of 13, that has shone an interest in it.
I also
might add that there is no real musical inclination or ability on either
side
of our families!
Alice in Orlando
=========================================================================
Date: Thu, 25 Mar 1999
18:57:36 EST
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From: NephiRose@AOL.COM
Subject: Re: John Upton, M.D. query
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We are finally getting some insurance that would allow us to choose
any doctor
or hospital nationwide! Yea! I am interested in scheduling
an appt with Dr.
Upton (his first name is John, right?) in Massachussets. If anyone
his phone
number and office address, I'd really appreciate seeing it posted on
the list
serv.
My daughter, Sarah V, is now 2 1/2 and I want to get her hand surgerys
finished this summer.
Belinda
=========================================================================
Date: Thu, 25 Mar 1999
20:14:09 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: John Upton, M.D. query
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Belinda,
I just happened to have Dr. Upton's number engraved in my brain.
And 'no' his
first name is not John. It is Joseph Upton, M.D. He is
a terrific man and a
fabulous doctor. He has done my son, Andrew's, hands. We
are actually going to
be starting up with surgeries in a few months. It is time to
thin down those
fingers. You will be extremely thrilled with the results you
will get from him.
His complete info......
Joseph Upton, M.D.
830 Boylston Street
Suite 212
Chestnut Hill, MA
(617) 739-1972
Good luck with everything. We actually have an app. in a week
and a half, I will
mention your name. His secretary is just as wonderful.
Make sure you explain the
situation when you speak with her. If you have any problems,
please let me know.
Lynn
rlthorn@earthlink.net
=========================================================================
Date: Thu, 25 Mar 1999
19:28:49 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Chatroom
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When are people planning on getting on to chat this week? I would
like =
to try find the time to do this. =20
Please give me a time and day.
Thanks
Deb Picht (Lisa's mom)
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<DIV><FONT color=3D#000000 size=3D2>When are people planning
on getting =
on to chat=20
this week? I would like to try find the time to do this. =20
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Please give me a time and
=
day.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Deb Picht (Lisa's=20
mom)</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Thu, 25 Mar 1999
20:19:34 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: John Upton, M.D. query
Mime-Version: 1.0
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Hi Belinda,
Paige goes to Dr. Upton...he's number and address is...
Joseph Upton, M.D.
830 Boylston Street
Suite 212
Chestnut Hill, MA 02167
(617) 738-6760
(617)739-1972
He has prevliges at "The Children's Hospital" and " Beth Israel Deaconess"
Congratulations and good luck,
Sheila
=========================================================================
Date: Fri, 26 Mar 1999
13:29:29 +1200
Reply-To: Information exchange and Internet
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Just wondering.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Nicki
I breastfed Amy up until one year when she bit me once too often. Obviously she was onto solids earlier as well. Expressing in hospital is no fun!
Good luck
Ann
=========================================================================
Date: Fri, 26 Mar 1999
13:29:31 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Eyes
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Ryan
>This improved her depth perception, espicially when going down steps.
She
>was constantly missing steps and taking spills, especially on steps
that
>were poorly lit or had low contrast.
My understanding is that if a child/person has monovision (which Amy apparently has) this wouldn't actually make any difference to the aspect of depth perception. Have I remembered wrong again? or is it that she now has improved ability to see and judge because of the operation? (if you can figure the difference)
Regards
Ann
=========================================================================
Date: Thu, 25 Mar 1999
20:36:42 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Chatroom
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Hi Deb,
I've been trying to get on but, my comupter says that it's having a
hard time
getting server....is anyone else having this problem?
Sheila
=========================================================================
Date: Thu, 25 Mar 1999
20:36:53 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Music
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Hello Everyone,
Just wanted to know if any one elso on the apert chat has a Macintosh
computer? I can get to the apert community, but I can't get the chat
to come
up. It says its waiting for applet to download. Does anyone have a
clue? I
sure don't.
I also wanted to comment about music. Carlee also loves music very much.
She
can be occupied with anything and hear music and her attention goes
directly
there.
I am so glad to hear Teeter's going to be a movie star. I would like
to know
if there is a way we can order a copy of this once it is done. Cathie
and Don
will you guys please let me know if there is.
Well I hope everyone is doing okay. As for us we are just ready for
this
cranial surgery on April 12th to come and go, and get it behind us.
Please
keep little Carlee in your thoughts and prayers.
Cristy
in Florida
=========================================================================
Date: Thu, 25 Mar 1999
22:02:21 -0500
Reply-To: Information exchange and Internet
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Myrtle Beach
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Hi all...
Just to let you all know you can include the Millers in the group that's
heading to Myrtle Beach in June. I just made reservations at
the Crown
Reef, yes, you heard it right, here we are trying to save for our
vacation in October and of course since we waited this long to reserve
the only rooms available to fit our family is one of the most expensive
ones. But what the hay you only live once right??? Anyway
we are
really excited and looking forward to meeting all of you.
Cathie how many families so far??? I hope more of you get the
urge and
reserve, I think it will be a lot of fun.....
Talk to you all later....
Raquel Miller in Sunny and very dry (no rain) South Florida...
P.S. Tomorrow Nicole will have her casts removed so we should
be able
to see our baby with all ten separate digits....huraaaayyy......bye
for
now...
=========================================================================
Date: Thu, 25 Mar 1999
21:44:41 -0600
Reply-To: Information exchange and Internet
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Music
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I had the same problem.
First make sure your browser is Java enabled. I sent a letter
off to excite
and I will relay their response to me.
To check if Java is enabled for Netscape, go to Edit, then Preferences,
and
select Advanced. From there you will be able to check EnableJava and
Enable
Javascript.
For Internet Explorer, go to View, Then Options, and then select Security.
From there you will see the Enable Java Programs option. Please
make sure
the Enable Java Programs is checked.
It took excite about five days to get back to me, by then I had the
problem
fixed by installing Explorer 5
The above directions is what excite Finally sent to me.
Good Luck
Judy
----- Original Message -----
From: Cristy Williams <CARLEE0604@AOL.COM>
To: <APERT@LISTSERV.AOL.COM>
Sent: Thursday, March 25, 1999 7:36 PM
Subject: Re: Music
> Hello Everyone,
>
> Just wanted to know if any one elso on the apert chat has a Macintosh
> computer? I can get to the apert community, but I can't get the chat
to
come
> up. It says its waiting for applet to download. Does anyone have
a clue? I
> sure don't.
>
> I also wanted to comment about music. Carlee also loves music very
much.
She
> can be occupied with anything and hear music and her attention goes
directly
> there.
>
> I am so glad to hear Teeter's going to be a movie star. I would like
to
know
> if there is a way we can order a copy of this once it is done. Cathie
and
Don
> will you guys please let me know if there is.
>
> Well I hope everyone is doing okay. As for us we are just ready for
this
> cranial surgery on April 12th to come and go, and get it behind us.
Please
> keep little Carlee in your thoughts and prayers.
>
> Cristy
> in Florida
>
=========================================================================
Date: Thu, 25 Mar 1999
23:37:30 +0000
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Just wondering.
In-Reply-To: <199903251214.WAA14789@hotnet.hotnet.com.au>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> I was just wondering if any of your babies where given breast milk,
I
> gather that breast feeding was out due to breathing and swollowing
> problems, but was it suggested that these babies could benefit from
breast
> milk, Just wondering, as I'm studying to become a lactation consultant
and
> one of my pet intresets is, the benefits of breastmilk on kids with
special
> needs and medical problems.
Some kids with craniofacial differences actually
have LESS
trouble breastfeeding than bottle feeding. Kids with
cleft palates
and many with cleft lips actually can breastfeed more easily as the
soft tissue of the breast seals the openings -- and because the
suckling technique is so different. Many apert kids would
have difficulty though, if they can't breathe well through their noses
(unless they were trached very early). Breastmilk is great stuff,
but it might be too stressful for a mom to pump while she's taking
care of a baby with very involved care.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Thu, 25 Mar 1999
22:22:32 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Just wondering.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I pumped my milk for my daughter (Tessier facial cleft) for nearly four
months -- until her first surgery, (www.widesmiles.org/gallery/peach/)
she
was entirely fed breastmilk. I know of several moms of cleft-affected
infants who have pumped for nearly a year, and many others who pump
in the
range of six months. Every baby is different and every mom deals
with a
unique set of circumstances.
There is a lot of misunderstanding about the mechanics of latching,
suckling
and babies with clefts. In fact, babies with clefts have all
sorts of
trouble breastfeeding and many are bottle fed using special bottles
(Mead
Johnson makes the squeezy ones and Medela I think makes the Haberman
feeders, neither of which require suction on the part of the baby.
As to
actual suckling at the breast, babies with a cleft of the palate are
highly
unlikely to be successful at latching and staying latched because the
cleft
(even a tiny hole in the soft palate) doesn't allow for the suction
to be
created so that the nipple can stay in the mouth as far back as it
has to in
order for the baby to 'milk' the breast. At least that's
how I understand it.
So while a cleft of the lip only may breastfeed, a cleft of the palate
very
likely will not breastfeed. However, many moms have got on a
rhythm and one
mom I know had 10 gallons frozen when she quit pumping. Her daughter
also
had Pierre Robin Syndrome, which has a undergrown jaw with many of
the
airway compromises found in your children who have Apert Syndrome,
and for
the same reason, not enough room in the structure because it is retruded.
On the benefits of breastmilk. My bosom buddy :-) here in Alberta
received
the Medal of Honor from the Alberta Medical Association for her research
and
subsequent publication of a booklet about clefting and breastfeeding.
There
are countless (somewhere over 13,000) published articles on the benefits
of
breastmilk. If you will mail me your address, I will most certainly
get a
booklet to you.
I was encouraged by my daughter's team, including her surgeon to pump
and
feed her breastmilk. Everyone was pro breastmilk, and they even
had pumps
which they sent home with me so I wouldn't have to try and rent one
with
everything else we had going on. I agree it can be a bit tricky
pumping
during those first few months of appointments, interventions, when
will it
ever slow down ...
It might be too stressful, and it is hard to keep your milk production
up,
but I also know other moms that sort of treated it as time out and
a
meditative time -- particularly in those early weeks. I know
others who
pump at the computer.
If I may be quite personal here, pumping was the thing I needed to do
to put
me back in control after my daughter was born. It was the one
thing that
none of her caregivers could do for her ... I was the only person who
could
give her breastmilk via pumping. That put me in the driver's
seat, and it
centered me enough to get on with the job of seeing to her care.
So I tried
to do it as long as possible because I knew it was good for both of
us.
Anyway, just thought I'd pop in here.
Pat in Calgary
>> I was just wondering if any of your babies where given breast milk,
I
>> gather that breast feeding was out due to breathing and swollowing
>> problems, but was it suggested that these babies could benefit from
breast
>> milk, Just wondering, as I'm studying to become a lactation consultant
and
>> one of my pet intresets is, the benefits of breastmilk on kids with
special
>> needs and medical problems.
> Some kids with craniofacial differences actually
have LESS
>trouble breastfeeding than bottle feeding. Kids
with cleft palates
>and many with cleft lips actually can breastfeed more easily as the
>soft tissue of the breast seals the openings -- and because the
>suckling technique is so different. Many apert kids would
>have difficulty though, if they can't breathe well through their noses
>(unless they were trached very early). Breastmilk is great stuff,
>but it might be too stressful for a mom to pump while she's
taking
>care of a baby with very involved care.
>
>Judy
>Judy Gibson
>
>jgibson2@erols.com
>
=========================================================================
Date: Fri, 26 Mar 1999
17:30:46 +1100
Reply-To: Information exchange and Internet
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From: Carol <carolh@HOTKEY.NET.AU>
Subject: Re: Just wondering.
MIME-Version: 1.0
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Hi Nicki,
Carol here in Australia. I breastfed Ashleigh until she was 5
1/2 months old
which was when she had her first operation to her head only because
I felt that
at least until this time speacially going through such a long surgery
and being
the first op she was at least getting the best from me.
Carol
tony zieth wrote:
> Hi,
> I was just wondering if any of your babies where given breast milk,
I
> gather that breast feeding was out due to breathing and swollowing
> problems, but was it suggested that these babies could benefit from
breast
> milk, Just wondering, as I'm studying to become a lactation consultant
and
> one of my pet intresets is, the benefits of breastmilk on kids with
special
> needs and medical problems.
>
> Nicki, Australia, awaiting news of our adoption.
=========================================================================
Date: Fri, 26 Mar 1999
09:01:06 EST
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach
Mime-Version: 1.0
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Hi Raquel! I am so glad you and your family decided to come with
us to Myrtle
Beach. We are all going to have a great time and we all look
forward to
meeting you and your family. So far there are 10 apert families
going and
some grandparents and Judy Amerman's niece and her family. What
are the dates
that you have reservations for? We are all trying to get together
on either
Sunday June 13th or Monday June 14th, to go out and eat SEAFOOD!!
Also, how
many people are going to be coming with you. The reason I ask
is because we
are going to the Crown Reef on Saturday April 3rd for a week and while
I am
down there, I will call the restaurant and try to get reservations
for our
hugh group. I will also ask if we can get a group rate or discount
for our
"Apert Conference" dinner. It never hurts to find out these things.
So far
the head count is about 40!!!
We can't wait to meet Nicole. Hope everything goes ok tomorrow
with the cast
removal. It's a strange feeling and sight to see your child with
fingers. It
is amazing what they can do!!
Love to all,
Cathie
=========================================================================
Date: Fri, 26 Mar 1999
11:03:38 EST
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From: Yonstein@AOL.COM
Subject: Re: Eyes
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Dear Carol:
Emily (20 Months) is scheduled to have the eye muscle surgery
with the next
hand surgery on April 30th. Her eye doctor believes it will help
the
strabismus. The procedure is relatively short and there are no
downsides to
doing it. I, too, don't know about after the midface is done.
Janine
=========================================================================
Date: Fri, 26 Mar 1999
15:06:21 -0600
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From: Tingley <tstctingley@COMWARES.NET>
Subject: Re: Eyes
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Carroline's eye doctor said he would not do Carroline's eye surgery
until
after the midface because he said they would have to do it again because
the eyes change so much after the midface. That may just be our
doctor's
way of doing it. I am sure ever doctor has there own reason for
every
thing.
To Nicki in Australia, I lived on a breast pump for 5 months every
2
hours. Even through the night, just to keep up with Carroline.
She could
not breast feed because she has a hole in her palate. By 5 months
I was
very deprived(sp) of sleep and I could not keep up with her eating
needs.
I am counting the days and it is only 77 more days till we leave for
Myrtle
Beach Ya!!!!!!!!!!!!!!! I can't what, it is going to be so much
fun!!!!
Don't forget Apert Chat Sunday night at 9:00 Eastern.
Stephanie & Carroline
----------
> From: Yonstein@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Eyes
> Date: Friday, March 26, 1999 10:03 AM
>
> Dear Carol:
>
> Emily (20 Months) is scheduled to have the eye muscle surgery
with the
next
> hand surgery on April 30th. Her eye doctor believes it will
help the
> strabismus. The procedure is relatively short and there are
no downsides
to
> doing it. I, too, don't know about after the midface is done.
>
> Janine
=========================================================================
Date: Fri, 26 Mar 1999
16:43:18 EST
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: craniofacial centers
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Does anyone know where all the craniofacial centers are across the country?
So far, I've only heard of the one in Dallas.
Also, does anyone know of any organizations that provide travel and
lodging
expenses for going to an out of state hospital to have surgery done?
Thank you,
Karin Pittman (Mason's mom) in Denver
=========================================================================
Date: Fri, 26 Mar 1999
17:08:45 EST
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From: BBarn60368@AOL.COM
Subject: Re: Lodging for families of
kids having surgery
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Karin:
How about the Ronald McDonald Houses? Do they have those there?
I have heard
of one of our families using one, somewhere, while their child was
having
surgery.
Alice in Orlando, Fl.
=========================================================================
Date: Fri, 26 Mar 1999
18:46:36 -0500
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: craniofacial centers
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Try FACES - The National Association for the Craniofacially Handicapped.
1-800-332-2373
PO BOX 11082
Chattanooga, TN 37401
Contact: Priscilla Caine
E-Mail: Faces@mindspring.com
Also I think the Children's Craniofacial Association
1-800-535-3643
P.O. BOX 280297
Dallas, TX 75228
e-mail DNKM90@prodigy.com
www.masterlink.com/children.index.htm
(Is this the one you were talking about?)
Hope this helps-
Andrea
=========================================================================
Date: Fri, 26 Mar 1999
20:05:49 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: craniofacial centers
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Karin,
Hi, Mike Hill (Robin's Silent Partner) here. Atlanta has a fantastic
cranifacial team at Emory University. The team conducts their
surgeries at
Egleston Children's Hospital and Egleston has a Ronald McDonald House.
The
team also performs surgeries at Scottish Rite which is a hospital run
by
the Shriners. I don't know what the cost, if any for the Ronald
McDonald
House since we are fortunate enough to live so close. Dr. Robert
Wood is
the Chief of the Cranifacial Clinic as well as the team. He performed
Carmen's Cranial Vault Remodeling and we are very pleased with the
outcome.
Doug and Ondra Lee (Asher's parents) used the Ronald McDonald House.
If
you want, I will volunteer my boss (Robin) to make a few phone calls
for
you.
Regards
----------
> From: Karin Pittman <KMea854818@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: craniofacial centers
> Date: Friday, March 26, 1999 4:43 PM
>
> Does anyone know where all the craniofacial centers are across the
country?
> So far, I've only heard of the one in Dallas.
>
> Also, does anyone know of any organizations that provide travel and
lodging
> expenses for going to an out of state hospital to have surgery done?
>
> Thank you,
> Karin Pittman (Mason's mom) in Denver
=========================================================================
Date: Sat, 27 Mar 1999
13:33:39 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Just wondering.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Pat, what a wise woman you are!!
YYYYes!!
>If I may be quite personal here, pumping was the thing I needed to
do to put
>me back in control after my daughter was born. It was the one
thing that
>none of her caregivers could do for her ... I was the only person
who could
>give her breastmilk via pumping. That put me in the driver's
seat, and it
>centered me enough to get on with the job of seeing to her care.
So I tried
>to do it as long as possible because I knew it was good for both of
us.
=========================================================================
Date: Fri, 26 Mar 1999
21:00:27 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Myrtle Beach
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Hi Cathie,
Yes we are really excited about going up to Myrtle Beach. We will
be
leaving Florida very early around 3:00 A.M. Friday morning 03/11 and
hoping to arrive that night. Unfortunately we will only be able
to stay
three nights we will be leaving Monday morning 03/14 long trip back
home. So if you could reserve the restaurant for Sunday it would
be
great, but of course don't just do it on our account if it's
o.k. with
everyone else's schedule then great.
Nicki's fingers turned out great I have not been able to see them Jack
took her to the doctors today she's bandaged back up but I will see
them
tomorrow when we start taking them off to begin our daily ritual of
unwrapping and rewrapping, I'm sure you guys still remember those days.
Well, talk soon..
Raquel....
=========================================================================
Date: Fri, 26 Mar 1999
20:09:03 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
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boundary="----=_NextPart_000_0038_01BE77C4.7EA524C0"
This is a multi-part message in MIME format.
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Raquel,=20
Sunday is fine with me. I told Cathie a few days ago that I though
that =
Sunday would be better thatn Monday. You know, Sunday IS family
day. =
So why not have a BIG family dinner.
As far as I know, I will also be inviting another guest. Her
name is =
Betty. I met her when I was 16 years old. I got stranded in Virginia
=
and had no where to go. Her husband,now deceased was a real sweetheart,
=
took me into their home and gave me a place to stay for a few days.
She =
lives in Conway and works a a movie theater in M.B.=20
Sunday is her only day off and I got to see her last summer for the
=
first time in 18-19 years.
But you will all love her. Cathie is really looking forward to
seeing =
her again too.
As far as I can tell, you should be able to meet everyone that is going
=
so far even with you leaving on Monday.
Are you staying at the Crownreef? If you said so, I forgot.
Thanks for counting the days,Steph, guess that means 74 days for me.
Judy
jamerman@uti.com
------=_NextPart_000_0038_01BE77C4.7EA524C0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Raquel, </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Sunday is fine with me.
I told =
Cathie a few=20
days ago that I though that Sunday would be better thatn Monday.
=
You know,=20
Sunday IS family day. So why not have a BIG family =
dinner.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>As far as I know, I will also
be =
inviting another=20
guest. Her name is Betty. I met her when I was 16 years old.
=
I got=20
stranded in Virginia and had no where to go. Her husband,now
=
deceased was=20
a real sweetheart, took me into their home and gave me a place to stay
=
for a few=20
days. She lives in Conway and works a a movie theater in
M.B.=20
</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Sunday is her only day off and
I got to =
see her=20
last summer for the first time in 18-19 years.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>But you will all love her.
Cathie =
is really=20
looking forward to seeing her again too.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>As far as I can tell, you should
be =
able to meet=20
everyone that is going so far even with you leaving on =
Monday.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Are you staying at the Crownreef?
=
If you said=20
so, I forgot.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Thanks for counting the days,Steph,
=
guess that=20
means 74 days for me.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_0038_01BE77C4.7EA524C0--
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Date: Sat, 27 Mar 1999
00:05:37 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: What to say to other Children?
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I've asked the question of what to say to strangers, but today two friends
asked me if they should tell their kids (ranging 5-12) beforehand about
Samantha or let them figure it out for themselves. I'm
not sure what to say.
I thought it was a good questions. One little girl that wasn't
told waitied
until her parents were out of the room and asked me about Samantha's
hands.
I felt she was holding the question in all afternoon. Then Samantha
was
looking at her and she matter of factly said "Oh she's noticing her
forehead
is different." No one told her and she was relaxed. So
in one sense I felt
she should of known and then minutes later I felt it was ok for her
to
discover herself. Samantha is only four months so the problem
isn't with
what's right for her yet (thought that will come up soon), but do any
of you
on the listserv know what seems to make other kids the most comfortable?
Love, Lisa Guyette
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Date: Sat, 27 Mar 1999
01:56:25 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: craniofacial centers
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Karin,
Have you tried calling the Ronald McDonald house yet? There is
an organization
here in MA that helps out families like that. I'm not so sure
about out of
state, but I know they do help.
Here are a couple of places to try:
Foundation for Faces of Children (MA)
Cynthia Chrisman, Executive VP
P.O. Box 1361
Brookline, MA 02146
(617) 734-7576
Let's Face It
Box 29972
Bellingham, WA 98228-1972
(360) 676-7325
About Face
99 Crowns Lane, 3rd Floor
Tornonto, Ontario M5R 3P4
Tel. (416) 944-FACE
Fax (416) 944-2488
Those are three that I have information on. I never contacted
them personally,
but if they cannot help you, then they might know of someone else who
can. You
can also try calling the airlines, and find out if they would give
you a
discounted rate. I'm not real sure how you get in touch with
the Ronald
McDonald house, but someone else on the listserve might. I believe
a few
people have already used them.
Good luck with your search. If I think of anything else, I will let you know.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Sat, 27 Mar 1999
07:48:03 EST
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From: Jenngram@AOL.COM
Subject: Re: What to say to other Children?
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I have never really warned other children or advised other parents to
do
so....I have left it up to their discretion. So far, it hasn't been
an issue
(Jordan is 18 mos...going on 18 years might I add) and I don't know
of any
parents that have told their kids ahead of time. From time to time,
I'll take
an informal survey, and get their opinions on the issue
By not warning anyone, I feel that no one "expects" him to be any different,
and for the most part hes not. The only questions I have ever received
were
about his fingers being red...they tend to stay red for a while after
surgeries. And this gives me the opportunity to explain the situation
and give
a proper educational lesson, whereas some parents may have only part
of the
story. However, if tehre was ever a parent that felt their child may
be
unusually curious, loud mouthed, or rude about it, I would hope they
would
prepare their child ahead of time, like I would do to Jordan if he
was about
to see something for the first time.
Every child (and parent for that matter) is different.....
Jenn(Tampa/St. Pete)
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Date: Sat, 27 Mar 1999
08:01:46 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Myrtle Beach (Dinner)
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Sunday evening is fine with us, too. We are not arriving until
Sunday, but
hopefully early. I am getting soooooo excited about this get
together!
Thanks Stephanie for letting me know about how many days I have to
count
down. I had thought about figuring it out, but have never made
it to my
calendar to actually count.
Hope to talk Sunday night. However, we have an Easter program
we are
attending at 6 p.m. and the drive home is about an hour. I am
hoping we
will be home by 9 p.m., but I will definitely join in when I get here.
Talk to ya later!
Robin Hill (apparently the boss of this household; NEWS to me!)
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Date: Sat, 27 Mar 1999
09:06:50 EST
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From: Copperhd87@AOL.COM
Subject: Re: craniofacial centers
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Several of the families on the listserver have used Drs. Marsh and Kaufmann
at
St. Louis Children's Hospital. We were very pleased with our
results and felt
very positive about the hospital and staff.
We stayed at the Ronald McDonald House for $5 per night. Sometimes
there is a
wait to get in, but it was absolutely a fabulous facility and worked
out great
for us. They also provided most meals. Just ask if you'd
like more
information.
Resa
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Date: Sat, 27 Mar 1999
09:18:52 -0600
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Seth's hand surgery update
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Dear Friends,
Our trip to Miami for hand surgery was not as difficult as I had
convinced myself it would be. Thanks to Jack, who had sent me
the
information on how to get the Super Shuttle to the hospital, my biggest
fear was alleviated since I knew how to get transportation to the
hospital at 12:30 a.m. Miami greeted us with warmth and sunshine the
next day. We left 12 inches of snow behind us in Southern Illinois.
I
was really pleased by how friendly and helpful everyone was.
It was
almost like being on holiday.
Baptist Children's Hospital did a wonderful job of handling Seth's
sensitivity to narcotics and the surgery went without a hitch.
However,
Dr. Khouri decided at the last minute, 7:30 p.m. (very late surgery),
to
give Seth the choice of whether or not to do both hands and if not,
which hand to do. This power to chose helped to calm Seth and
he went
off to surgery without noticeable anxiety. However, we now have to
go
back April 12 for surgery on the left hand. Having the left hand free
has been a blessing. Seth is now writing in cursive with the
left hand,
much to his teachers amazement. Kids are so adaptable.
If any of you get a chance to go to Miami be sure to look up Raquel
and
Jack Miller. We had a great time at their lovely home and found
their
children to be delightful. Seth and Erica seemed to hit if off
and
spent time playing together in Erica's room. Nicki had surgery
the same
day as Seth. She had casts on both arms, but that didn't hold
her back
one bit. She is adorable and energetic. I am looking forward
to seeing
her new fingers on the next visit.
Warmly, Dori
Please note that I have a new e-mail address: dajeff@siu.edu
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Date: Sat, 27 Mar 1999
10:41:11 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Eyes
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Hi Ann:
I don't know about the monovision stuff but Michelle's step mishaps
pretty
much disappered.
Ryan
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Date: Sat, 27 Mar 1999
10:45:37 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: What to say to other Children?
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Hi Lisa,
I've found out that children are just like sponges...they want to know
everything...and their minds are going a million different directions.
Some
of them ask straight out what is wrong while others will hang back
with that
curious face on them. I've been taken Paige to the parks ever
since she was
just an infant...when I see the kids hudled in a corner talking about
Paige,
I just say that they can ask me any questions they want about her....you
would
be amazed at the intelligent questions I have heard. If you are
up front with
them, you will be very surprise at what they say. Give it a try!!!!!!!!!
Sheila
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Date: Sat, 27 Mar 1999
13:46:13 -0600
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From: Anne Mosier <dmosier@JUNO.COM>
Subject: Re: Lodging
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Hi to all,
I am Denny Mosier. My wife's name is Penny. Our daughter
Anne was born
with Apert in 1990.
I have been reading the shares and remembering all the surgeries, and
struggles that we have
been through and that some of you are just now experiencing.
I wanted to respond to the lodging. We live in Augusta Kansas
and our
team is in Kansas
City. Our team is lead by Dr. John Hiebert. Anyway,
whenever we go up
there we use the Ronald McDonald
house. Although it is more for cancer patients, we do get in
more often
than not because they have
the room available, and after you have stayed there once they seem
to
make it easier to get in again.
The other point is that our doctor called and recommended us.
Hi, I am Penny, I just wanted to respond to the question about breast
feeding. My daughter had a cleft palate and could not suck, but
I still
put her to the breast and fed her breast milk for the first 3 or 4
weeks.
I think this was beneficial to both of us. I know health
wise breast is
always best but it also helped me to feel that I could do something
in a
situation that I felt helpless in. Because of the amount of time
and
energy it took to care for her I only could manage to feed and pump
for a
short time, but I will never regret getting her off to the best start
possible.
Bye for now. Denny and Penny Mosier
=========================================================================
Date: Sat, 27 Mar 1999
16:57:23 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: What to say to other Children?
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Lisa,
We have always been straight forward with people. You need to
be honest
with them and just tell them she was born that way. Lisa has
always been
accepted well. I have learned that you can't keep them isolated.
You have
be completely honest and just tell she is special and this is the way
God
wanted her to be.
To be truthful I found that adults stare more than kids. I think
they
educated kids about Lisa. The kids have learned to accept her
the way she
is.
Deb Picht
-----Original Message-----
From: Lisa Guyette <LAM1126@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, March 26, 1999 11:14 PM
Subject: What to say to other Children?
>I've asked the question of what to say to strangers, but today two
friends
>asked me if they should tell their kids (ranging 5-12) beforehand
about
>Samantha or let them figure it out for themselves. I'm
not sure what to
say.
>I thought it was a good questions. One little girl that wasn't
told
waitied
>until her parents were out of the room and asked me about Samantha's
hands.
>I felt she was holding the question in all afternoon. Then Samantha
was
>looking at her and she matter of factly said "Oh she's noticing her
forehead
>is different." No one told her and she was relaxed. So
in one sense I
felt
>she should of known and then minutes later I felt it was ok for her
to
>discover herself. Samantha is only four months so the problem
isn't with
>what's right for her yet (thought that will come up soon), but do
any of
you
>on the listserv know what seems to make other kids the most comfortable?
>
>Love, Lisa Guyette
>
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Date: Sat, 27 Mar 1999
20:28:57 EST
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Music
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My daughter Mallory plays the piano by ear. One night while cooking
supper, I
heard someone on the piano and thought it was Melissa, the one that
took
lessons for two years. To my surprise, my son said no mom it's Mallory.
I was
so surprised. She is in the band at school now.
Diane
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Date: Sat, 27 Mar 1999
21:27:45 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: hands
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Hello Everyone,
I was wondering if there are any children with type 3 hands. The worse
type of
hands with aperts. (that's what our Dr. said) that have 5 functional
fingers
on each hand? Carlee's hand surgeon told us when he released her pinky's
in
January that he could only make 3 fingers and a thumb functional. I
have been
thinking of a second opinion ever since. But the other day I made up
my mind
that I am going to do it. If they tell me they can only do as good
as her Dr.
said then I will know that atleast I tried. I just keep thinking
there might
be a Dr. that may could get all 5, and functional. Well if any of you
have
children with that type of hands could give me info. I sure would appreciate
it.
Thanks,
Cristy
in Orange Park, Florida
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Date: Sat, 27 Mar 1999
21:35:04 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: What to say to kids..
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I vote for the up front and direct method. I was a Girl Scout
Camp
Counselor a few summers ago for four weeks, with a new group of girls
each week. The first week was rough. I was new to the camp
scene and to
these kids. I prayed about the situation and found the courage
to talk
to the new group right away about my differences and allowed them the
freedom to ask me anything. By the third week the girls were
seeking me
out when they needed something or wanted to talk. I think it
was because
I was honest and trusted them with my heart and soul. They in
turn
trusted me. Sometimes I wish parents would give a heads up to
their
kids, just to spare me that awkward moment, (selfish) but I can look
back
on the camp experience and remember the strength I gained from my
openness. I just so happens I have two groups of girl scouts
coming to
share Easter goodies with our patients this week. Should be interesting.
Joanne in the Home of the OSU Buckeyes!!!
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Date: Sat, 27 Mar 1999
22:08:39 EST
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From: Nodrmat26@AOL.COM
Subject: Re: hands
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Cristy~
Zoey's Mom, Christina here and I think Zoey has the type of hands you're
talking about. I probably should have gotten a second opinion,
but everything
they told me ( and many, many times I might add) made sense to me.
They told
me that they were going to go into surgery and look around and see
what they
had to work with. She had ended up with 3 fingers and a thumb
on each hand
because she simply did not have enough blood vessels and "stuff" like
that to
make any more fingers functional. Yes, she could have had five
fingers, but
one of them would have just been "in the way" of the other working
finger.
Zoey gets her surgery from the Air Force Drs down here in San Antonio.
Hope this helps,
Christina
San Antonio
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Date: Sat, 27 Mar 1999
22:59:17 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: The trip
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Hi Judy,
Yes, we will be staying at the Crown Reef so if the dinner can be
planned for Sunday it would be great. When I made the reservation
I
asked if our room could be close to the other Apert families I gave
the
Sears and Tingley name which were the only two names that I could
remember that were going (remember 4 kids, very few active brain cells
left) the attendant told me she noted it on the reservation, but that
the rooms would not be assigned until you arrive, so I asked her if
we
could at least be in the same tower, anyway we'll see when we get
there..
Take care..
Raquel...
Judy Amerman wrote:
> Raquel, Sunday is fine with me. I told Cathie a
few days ago that I
> though that Sunday would be better thatn Monday. You know,
Sunday IS
> family day. So why not have a BIG family dinner.As far as I
know, I
> will also be inviting another guest. Her name is Betty. I met
her
> when I was 16 years old. I got stranded in Virginia and had
no where
> to go. Her husband,now deceased was a real sweetheart, took
me into
> their home and gave me a place to stay for a few days. She
lives in
> Conway and works a a movie theater in M.B.Sunday is her only day
off
> and I got to see her last summer for the first time in 18-19 years.But
> you will all love her. Cathie is really looking forward to
seeing her
> again too. As far as I can tell, you should be able to meet everyone
> that is going so far even with you leaving on Monday. Are you staying
> at the Crownreef? If you said so, I forgot. Thanks for
counting the
> days,Steph, guess that means 74 days for me. Judy jamerman@uti.com
=========================================================================
Date: Sun, 28 Mar 1999
22:01:06 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: What to say to other Children?
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I agree with you Jenn. If YOU show you accept your child is AOK then you are modelling how you want them to behave. And remember, children are very egocentric and some don't even notice for a while, which gives YOUR child (when they are older) time to suss them out first.
The important thing is to develop a series of brief sentences to explain why your child is different - satisfy their curiosity without wearing yourself out with long technical explanations. Honesty is invaluable and is good role modelling for your child.
Amy grew up with people staring at her, so she used to stare at them as well, which often "fixed" the other child. I figured "Go for it girl, if that's how you are being treated, let THEM know what it feels like!"
She doesn't do it any more as at 8 yrs she is really aware of her differences. She has gone right through summer wearing shoes and socks to school instead of sandals.
>However, if tehre was ever a parent that felt their child may be
>unusually curious, loud mouthed, or rude about it, I would hope they
would
>prepare their child ahead of time,
Absolutely! Or preferably leave them elsewhere!
Our Good News is that Amy can now skip both forwards and backwards and is SOOOOO proud of herself! (as we are of course)
Best wishes to all heading into surgery and congrats to those who are recovering - another dragon befriended.
Goodnight.
Ann
NZ
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Date: Sun, 28 Mar 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: hands
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Hi Cristy
Amy had no separation on either hand at birth. She now has five digits on each hand. Not beautiful and they don't bend except at the base where they join the hand, but she does just fine.
Feel free to ask if you want to know more.
Regards
Ann
NZ
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Date: Sun, 28 Mar 1999
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From: Jenngram@AOL.COM
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Jordan had type 3 hands, and right now, i am proud to say,we have 5
functional
fingers on teh right hand and on 4-23-99 we go back in to hopefully
do the
same on the left...(we have one last separation on that side), but
he did the
"smaller of the two first, so I am hoping that the left would prove
to be
easier.
Jordans doctor is a Dr. Ernesto Ruas, here in Tampa BAy. I got several
opinions b/c he kept telling me there were no guararntees. For a time
I wan'r
satisfied w/ that until several others told me the same. So, all we
could do
is try...he never told me he couldn't do it, or wouldn't try...and
he was just
as happy to come out and tell us he was able to do that last separation
successfully, as we were to hear it!!!!!
Heres hoping the same goes for the left hand!!!
Jenn(Tampa/St. Pete)
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Date: Sun, 28 Mar 1999
23:22:02 -0500
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Thanks
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I would like to thank everyone that replied to my Breastfeeding Question.
I'm glad that some of you had the chance to fed your babies, I was
having a
discussion with a midwife that said she was concered about he infromation
that parents where getting when there Children where born with Special
needs, Although you guys are in America, most of you anyway, you still
gave
us something to follow up thanks again.
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 14 months, post fontan for tricuspid atresia, completion
due following Cath sometime after June 1999. Newly diagnosed CDLS,
Reflux,
peg fed, Nissen fundo op end of March.~~~~crawling at last~~~~~~watch
out
pussy cat!!!!!!!
Queensland Australia.
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Date: Sun, 28 Mar 1999
09:30:04 -0600
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: hands
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Dear Cristy,
Seth was born with type three hands. Dr. Roger Khouri, now at
the Miami
Hand Institute, was able to get five digits on each hand. The
middle
fingers are more or less nonfunctional, however, his other fingers
work
around them. Dr. Upton was at St. Louis Children's a year ago for a
Apert hand teaching seminar and said that of all the children he had
seen that day, Seth had the best hand function.
The type three hand has a natural inward curve of the palm which allows
better opposition between the thumb and the fourth and fifth digits.
It
is the worst to separate, but there are some advantages. Our recent
surgery was to shape fingers and remove bulk tissue that resulted from
groin flaps and had little feeling. I am pleased with the way
the right
hand is looking. Seth still has growth plates so the straighten
of the
bones on the index fingers and ring fingers will have to wait until
growth is complete.
I feel, as a parent in charge of making important decisions about my
child's health, that second opinions are important. None of Seth's
doctors have minded when we sought out a second opinion. It sounds
as
though there are several good hand surgeons in Florida that you can
contact if you choose to do so.
By the way, Seth's first hand surgery to release thumbs was at two weeks
of age. This thumbs are quite mobile and look good.
Please feel free to contact me directly if you have any questions.
Warmly, Dori
=========================================================================
Date: Sun, 28 Mar 1999
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: The trip
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Jack and Raquel wrote:
>
> Hi Judy,
> Yes, we will be staying at the Crown Reef so if the dinner can be
> planned for Sunday it would be great. When I made the reservation
I
> asked if our room could be close to the other Apert families I gave
the
> Sears and Tingley name which were the only two names that I could
> remember that were going (remember 4 kids, very few active brain
cells
> left) the attendant told me she noted it on the reservation, but
that
> the rooms would not be assigned until you arrive, so I asked her
if we
> could at least be in the same tower, anyway we'll see when we get
> there..
>
> Take care..
>
> Raquel...
>
> Judy Amerman wrote:
>
> > Raquel, Sunday is fine with me. I told Cathie
a few days ago that I
> > though that Sunday would be better thatn Monday. You know,
Sunday IS
> > family day. So why not have a BIG family dinner.As far as
I know, I
> > will also be inviting another guest. Her name is Betty. I
met her
> > when I was 16 years old. I got stranded in Virginia and had
no where
> > to go. Her husband,now deceased was a real sweetheart, took
me into
> > their home and gave me a place to stay for a few days. She
lives in
> > Conway and works a a movie theater in M.B.Sunday is her only day
off
> > and I got to see her last summer for the first time in 18-19 years.But
> > you will all love her. Cathie is really looking forward to
seeing her
> > again too. As far as I can tell, you should be able to meet everyone
> > that is going so far even with you leaving on Monday. Are you staying
> > at the Crownreef? If you said so, I forgot. Thanks
for counting the
> > days,Steph, guess that means 74 days for me. Judy jamerman@uti.com
Hi guys...when are you coming to Niagara Falls...we will organize a
get
together for those close to here????
=========================================================================
Date: Sun, 28 Mar 1999
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From: Timothy Holt
<tholt@WEBTV.NET>
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~Way to go Mallory!!~
Suday will be a great day for us to have the family dinner as well.
We
willbe arriving on Friday the 11th, and leaving Monday the 13th during
the morning hours. Courtney (almost 10 months) is pulling herself
to a
stand, and is taking steps sideways! She is waving bye-bye.
She has
came a long way in a few weeks. The kids always amaze me with
their
accomplishments! We are excited about the June vacation!
See you all
soon!
Mechelle,
North Carolina
--WebTV-Mail-1176271081-132
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<html>
<body background=
"http://members.tripod.com/~mintcar/pooh2.gif" text="brown">
<embed src=
"http://badboy.filecity.com/downloads/midi/arrested_development/everyday_people.mid"
autostart="true">
</body>
</html>
--WebTV-Mail-1176271081-132--
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Date: Sun, 28 Mar 1999
13:49:42 EST
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From: Debbie Shepherd
<Dshep9141@AOL.COM>
Subject: What to say to the other children
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Hi Everyone !
I'm new to the Listserv. Jilian is my special angel. For me this has
been a
tough issue. I usally don't say anything to the younger children. They
for the
most part don't seeem to notice. If there are older children I explain
and
answer any questions they may have. Jillian has 20 older cousins and
they take
her everywhere. My older son plays alot of sports so we are always
around alot
of people. Jiliian is very out going and at two she holds a good conversation.
I think she knows more people then I do now. I have noticed now that
when we
go out into our community that no one seems to notice her differences
anymore.
Shes just another one of the children running around causing havoc.
All that
worrying for nothing so far!
=========================================================================
Date: Sun, 28 Mar 1999
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: hands
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Hi Christy,
Paige was born with type three hands, unfortunately we did not get
a second
opinion and went with the Doctor's advise. He said that it would
be best if
we went with 3 fingers and a thumb because if we tried for all five
there
might be a chance of losing not only one but more of the fingers.
Later we
found out that this surgery has been sucessful with other children...Go
for a
second opinion.
Sheila
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Date: Sun, 28 Mar 1999
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: hands
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Christy,
My daughter Lisa only has 3 fingers and a thumb. We doctor through
the Mayo
Clinic in Rochester. They said if they tried to separate the
middle finger
and ring fingers she would not have use of either one. She does
fine with
them. Of course she too can't bend them because of the joints
not being
there but she functions very well with the way her fingers are.
She can
write, color and has just learned to adapt. We did not go for
a 2nd opinion
either but maybe should have. She is 9 yrs old and functions
very well.
Deb Picht
-----Original Message-----
From: Cristy Williams <CARLEE0604@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, March 27, 1999 8:29 PM
Subject: hands
>Hello Everyone,
>
>I was wondering if there are any children with type 3 hands. The worse
type
of
>hands with aperts. (that's what our Dr. said) that have 5 functional
fingers
>on each hand? Carlee's hand surgeon told us when he released her pinky's
in
>January that he could only make 3 fingers and a thumb functional.
I have
been
>thinking of a second opinion ever since. But the other day I made
up my
mind
>that I am going to do it. If they tell me they can only do as good
as her
Dr.
>said then I will know that atleast I tried. I just keep thinking
there
might
>be a Dr. that may could get all 5, and functional. Well if any of
you have
>children with that type of hands could give me info. I sure would
appreciate
>it.
>
>Thanks,
>
>Cristy
>in Orange Park, Florida
>
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Date: Sun, 28 Mar 1999
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: John Upton, M.D. query
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Where does he practice? Thanks Mary
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Date: Sun, 28 Mar 1999
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Christy:
Shirley had type 3 hands (if those are the "rosebuds") and she now has
ten
functional fingers. Our Dr., also, would not promise anything,
until he "got
in there", but he felt like he would be able to get 10 fingers, from
the looks
of the x-rays. I think the "severity" of the fusion has a lot
to do with it.
Some of our kids' finger bones are fused, as well as the fingers, themselves.
Shirley's finger bones were only fused at the very tips.
She has no knuckles either, except the ones at the ends of the pinkies
and, of
course, the basal knuckles. One thing that I noticed, after her
fingers were
separated, was that the functions of each of her fingers were different
from
the functions of ours, but they each had a function and she had no
trouble
putting them to use.
Love to you all,
Alice in Orlando, Fl.
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Date: Sun, 28 Mar 1999
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Lisa and all:
Earlier this year I wrote a story that addresses your concerns.
It's a
thought and it works for me, so here is my story:
The Event I Dreaded From the Day She Was Born
I could
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Lisa and all:
Earlier this year I wrote a story that addresses your concerns.
It's a
thought and it works for me, so here is my story:
The Event I Dreaded From the Day She Was Born
I could feel the anger boiling up inside me, as it had done so many
times
before. The older I got the more determined I became to overcome
this natural
phenomenon that I was born with.
Shirley, Will, and I had just entered the kids' Dentist office.
As we came
through the door, a little boy, who was in the doorway, looked at Shirley
and
said with disgust, "What happened to her?" I just ignored him
and kept
walking. Again he asked the same question. I asked, What
do you mean?", and
kept on walking, ignoring his response.
I sat down to fill out insurance forms and the kids sat across the room.
Later on the little boy was sitting next to Shirley and again he asked,
in the
same voice of disgust, "What happened to you?" I looked up from
my forms and
just glared at him. After about a minute of glaring, I looked
back at my
forms, but could not get past this occurrence. The anger boiled
up inside of
me and try as I may, I could not hold it in. Out it came, "Maybe
she would
tell you what happened to her, if you would, first, tell her how you
got to be
so rude at such a young age!"
On the way home, as usual following one of these situations, during
which I
had lost control of my anger, I played the whole event over and over
in my
mind. With each replay, I was feeling more and more ashamed.
Since becoming a Christian, I had begun to follow these outbursts with
thoughts of how I could have handled the situation better. The now
popular
question, "What would Jesus do?" is the question I would ask myself
to be able
to come up with the right answer. After several replays the answer
came to
me.
Two days later, the opportunity to try out my answer became available.
I went
to the playground to pick Shirley up, at the after school program she
was in.
Shirley came running across the playground, when she saw me.
When she reached
me, I picked her up and swung her around, kissing her and telling her
how much
I had missed her, all at the same time.
She blurted out, "Mama, I want you to meet my friend!" I said,"
Okay!"
Together, we walked over to the swing set. When we got there,
the little girl
said, "Hi! I'm Shirley's friend, Brittany. Do you know
what happened to
Shirley's fingers?"
I replied, in a really excited voice, "Yes, I do! It's such a
neat story. Do
you want to hear it?" She said,"Yes". So I said, "Well,
when Shirley first
came to me as a little bitty baby, her fingers were all stuck together.
Shirley, show her how your fingers were when you were a baby."
Shirley, caught up in the excitement, proudly held up her fingers, altogether
in the rosebud shape that they were in when she was born. I said,
in the same
excited voice, "And then.... we took her to the hospital and a doctor
separated all her fingers!" At that time, Shirley spread out
her fingers and
wiggle all her digits. I said, "Isn't that neat!!" The
little girl said,
"Yeah!!!".
It fell together so perfectly and all involved were happy. Again,
God
provided what I needed to overcome an uncomfortable situation.
He remains
forever faithful.
Alice in Orlando
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Date: Sun, 28 Mar 1999
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Lisa:
I, also, feel it is very important to give our children the words to
use to be
able to talk about it, when they are old enough. When Shirley
turned 5, and
started paying attention to the kids' questions, it occurred to me
that she
didn't know what happened to her. Afterall, she was too young
to remember her
surgeries and I had not told her why her fingers were like they were.
So, I
sat her down and asked her if she wanted to know why her hands were
different.
She said yes, so I told her the story and showed her some of her baby
pictures, at the same time. I, also feel that a good positive
attitude during
this conversation, helps greatly.
Alice in Orlando, Fl.
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Date: Sun, 28 Mar 1999
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: The trip
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>Hi guys...when are you coming to Niagara Falls...we will organize
a get
>together for those close to here????
We are planning a family trip to the Falls in mid-June. Would
be interested
in a get together :)
Rose
La Mirada, CA
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Date: Sun, 28 Mar 1999
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From: Rich Thornquist
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Subject: Re: John Upton, M.D. query
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Mary,
Dr. Upton practices in Massachusetts and his first name is actually
Joseph.
Need any more information, please feel free to ask.
Lynn Thornquist
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Date: Sun, 28 Mar 1999
22:32:44 +0000
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From: "J. G. Lindamood"
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Hello out there!
As hind sight is almost always 20-20, I just realized I didn't mention
my
PARENTS perspective on what to say to kids, which is the opposite of
how
I believe now, as the adult. My dad was pretty much out of the
picture,
as he still is. He doesn't know how to deal with me, a DAUGHTER,
and a
daughter with major differences. My mom however paid attention
to me,
but not to my differences. That was and is a topic rarely visited.
To
me, it's a heck of a lot easier to just point out the elephant in the
room and get it over with.
This morning in church the little girl in front of me, as she was turned
around in her chair, noticed me and my differences and would not stop
staring. One, I wish her parents would have gotten her to sit
in the
chair properly and two, my smiles, hoping to distract her, didn't phase
her. So I was feeling a little "on the spot" until the pastor
announced
the time for the little ones to leave for their services. Part
of me
wanted to lean forward and tell her and her parents "how it was", but
that would have distracted the others around us, and caused more
attention. Yes, the sticking out of my tongue crossed my mind,
but I had
to remember where I was. In those situations I always think about
the
others around me and if they are thinking "what is she staring at?
and
then their attention comes to me. I have also thought about seeking
the
parents out after the service and allowing the kid the chance to check
me
out without the awkward time.
Spring is FINALLY here! (you watch, it'll snow tonight!)
Joanne
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Date: Sun, 28 Mar 1999
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: The trip
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We will be going to the falls mid October, so let us know if you would
like to have a get together..
Raquel Miller....