This is a multi-part message in MIME format.
------=_NextPart_000_0023_01BDD5C7.77164BC0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
hello everybody now talking about tissue when toni had her operation
on =
her thumbs they actually put bags into her skin wich i think they were
=
called tissue expanders for a period of 8 weeks so they did not have
to =
use hardly any skin.it also looks quite natural.if you want to know
more =
just ask
angelique
------=_NextPart_000_0023_01BDD5C7.77164BC0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>hello everybody now talking
about =
tissue when=20
toni had her operation on her thumbs they actually put bags into her
=
skin wich i=20
think they were called tissue expanders for a period of 8 weeks so
they =
did not=20
have to use hardly any skin.it also looks quite natural.if you want
to =
know more=20
just ask</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =20
angelique</FONT></DIV></BODY></HTML>
------=_NextPart_000_0023_01BDD5C7.77164BC0--
=========================================================================
Date: Tue, 1 Sep 1998
11:58:02 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Carmen Rae is home!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Just wanted to let everyone know that Carmen Rae is finally home.
She came
home late yesterday afternoon. Her illness was apparently the
result of a
virus (?). She was very ill and at one point completely quit
eating. She
is a little thinner than she was last week, but her appetite and her
smile
is back.
We want to thank everyone for their thoughts and prayers. We have
a short
break as Carmen Rae will have her thumbs released on September 25th.
Mike & Robin
=========================================================================
Date: Tue, 1 Sep 1998
09:13:08 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Re: Carmen Rae is home!
In-Reply-To: <199809011558.LAA17856@pimout1-int.prodigy.net>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Welcome home Carmen Rae
and good going mom and dad.
What a battle you've had.
Congratulations.
All the best,
Scott
At 11:58 AM 9/1/98 -0400, ROBIN L HILL wrote:
>Just wanted to let everyone know that Carmen Rae is finally home.
She came
>home late yesterday afternoon. Her illness was apparently the
result of a
>virus (?). She was very ill and at one point completely quit
eating. She
>is a little thinner than she was last week, but her appetite and her
smile
>is back.
>
>We want to thank everyone for their thoughts and prayers. We
have a short
>break as Carmen Rae will have her thumbs released on September 25th.
>
>Mike & Robin
>
>
=========================================================================
Date: Tue, 1 Sep 1998
12:54:08 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: aperts
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Hi Angelique,
Michelle started pre-school at the age of 3 and we have not have any
teasing at all up to know (that we know of). Michelle is in second
grade
now she is almost 8. Yes some kids stare but she does not think she
is any
dfferent, she just moves on. Her classmates have all been really
friendly
and treat her just like any other child, she is in her second year
at the
same school and the kids know her.
She does not like to talk about being different, maybe some day she
will.
We do tell her that God made her in a special way.
Ryan & Martha
Algonquin, IL
=========================================================================
Date: Tue, 1 Sep 1998
13:56:18 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: PICTURES
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
> Just wanted to let everyone know that I am finally getting Brooke's
> pictures in the mail. The first batch going out is to everyone we
have
> received a picture from. I just need stamps. I will get
everyone elses out
> with in the next week.
>
>
Better late than never!
>
Stacy
=========================================================================
Date: Thu, 2 Jul 1998
16:30:33 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Fw: aperts (MY RESPONSE)
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
However the friends I made in school and in adulthood are the gems of
life
that help you keep on "Keeping on"
THOSE ARE THE BEST KIND. I feel so greatful to have a boyfriend
and a best
friend that really respects me and understands me. I remember
one time my
best friend and I went to the mall, and there were some people who
stared
at me throughout the time we were there. She even told them a
few times,
that what they were doing was wrong. When we got back home, she
asked me
"Andrea how can you put up with that.. I don't think any other
guy
understands me the why Chris does. He always wants to be sure
I'm happy.
Just to know that there is someone there, even if its a parent, sister,
friend, etc. that supports me does so much.
No matter
> where you send your kid there will always be some unkind word or
stare...
I
> still get them and im 31 but i have learned the value of my
own self
worth...
> They don't determine how I feel about ME I do.
VERY WELL PUT.
> It is vital to surround your child with love and support but at the
same
time
> they have to learn that not everyone in this world will be kind.
They
have to
> know how to "pick themselves up dust themselves off and start all
over
again!
> They have to learn that the people who love them are the ones to
pay
attention
> to and learn from. They have to know the value of the phrase
"don't let
the
> Turkeys get you down!"
>
> They have to know where to find that support... thoriugh things like
this
> listserv, through good friends and through family!!
>
EXACTLY...
I COULDN'T HAVE SAID IT BETTER MYSELF JENNY.
=========================================================================
Date: Wed, 2 Sep 1998
09:16:27 +1000
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: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: aperts
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_000E_01BDD652.5CF89820"
This is a multi-part message in MIME format.
------=_NextPart_000_000E_01BDD652.5CF89820
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
thank you for the response for the teasing situation it has helped a
=
lot.i hope you all have a good day.
angelique
------=_NextPart_000_000E_01BDD652.5CF89820
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>thank you for the response
for the =
teasing=20
situation it has helped a lot.i hope you all have a good =
day.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p; =20
angelique</FONT></DIV></BODY></HTML>
------=_NextPart_000_000E_01BDD652.5CF89820--
=========================================================================
Date: Tue, 1 Sep 1998
19:50:51 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Derek's successful surgery!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
GREAT NEWS!!!!
Glad to hear another doctor is using dissolvable plates. Carmen
Rae has
them in her head after her cranial surgery on June 12th. I will
warn you
though, when the plates start to dissolve, screws come lose and sometimes
stick out. Carmen Rae has this strange lump above her eye that
is kinda
jagged. Plastic surgeon says it is perfectly normal; so on we
go. It was
a little weird before we knew what it was. Just thought I would
pass this
on.
Robin Hill
----------
> From: Thomas Troudt <ttroudt@SPRYNET.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Derek's successful surgery!!!!!
> Date: Wednesday, August 26, 1998 5:24 PM
>
> Hello to all,
> Derek had his craniofacial surgery on Thurs.
the 20. We were home by
> Sunday!!! He now has a wonderfully shaped head and the
lumps and bumps
are
> gone. The surgeons used the new dissolveable plates and no
metal was
used.
> How amazing new technology is. Derek is roaring to go and if
he didn't
have
> to wear a helmet, you wouldn't be able to tell that he had anything
done
to
> him a week ago. No swelling, no pain, no nothing. Yipee!
Thankyou
everyone
> for your kind responses and your prayers. Love, the Troudts
in Greeley
> Colorado
=========================================================================
Date: Tue, 1 Sep 1998
16:52:59 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Brenna's pics
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Don,
I received Brenna's photos back in the mail today. I see you have
been
busy!
:-) Us too - the reason I haven't been active on the list lately.
We
finally moved into our new house - the one we bought, basically tore
down
and majorly remodeled. Of course we hired the contractors :-)
Still it
was quite a project. And now with the 2 kiddo's my computer time
is more
limited. I will hop back in soon though. Caden is almost
5 months old and
sleeping most nights. Now finally Brenna is doing better too.
Brenna just
had her T & A's removed 2 weeks ago. She briefly had a tough
time post op
as we expected. She almost needed a trach - scared the beejeebers
out of
me. Her airway is very small from what her ENT says. Anyways,
she bounced
back after one day and is now almost herself except she is breathing
so
much better at night. Funny - she wanted hot dogs too after her
surgery
:-) It is great.
Well hope all is well and thanks for working on our page. I couldn't
pull
up her pictures though. Only her story. Please Let me know
if it is me or
something else.
Take care, Robyn J - very hot, Eugene, OR
=========================================================================
Date: Tue, 1 Sep 1998
20:18:11 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Copperhd87@AOL.COM
Subject: Re: Dissolvable plates
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
After Mitchell's surgery, I thought his dissolvable plates would disappear
evenly. However, they seem to be just getting smaller and smaller,
moving in
from the edges. We have not noticed any screws.
Just two weeks ago, I opened our local newspaper and there on the Business
page was a huge article about the "local boy done good" distibutor
of Lorenz
surgical products. There was a big picture of a reconstructed
skull and the
plates. There were several quotes from the local craniofacial
team (who we
choose not to use). It was just amazing to just flip thru the
paper and see
it right there. You can read this article if you like by
searching the news
archives for Lorenz at www.edmondsun.com. Sometimes I feel so
isolated with
my interest in things like dissolvable plates. It was just really
cool to
find that someone else thought it might be newsworthy.
Glad to know that Carmen Rae is better. Has anyone heard from
the Foster's
lately?
Resa
=========================================================================
Date: Tue, 1 Sep 1998
20:33:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Copperhd87@AOL.COM
Subject: National Academy of Child Development
NACD
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Has anyone heard of an organization called National Academy of Child
Development of NACD? They have a web site at www.nacd.org.
They work with
brain development and also speech and language development in both
delayed and
non-delayed children. Their web site is pretty slick, and I was
wondering if
anyone had had any experience with them. Are any of their products
worthwhile? What would be the advantages of their program over
early
intervention therapists? Do you think they can do what
they say they can?
Resa
=========================================================================
Date: Tue, 1 Sep 1998
23:35:41 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: Derek's successful surgery!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I have heard that some times there can be problems with the dissolvable
plates
that they can also push onto the brain. Does anyone know about
that?
Stacy Bell
ROBIN L HILL wrote:
> GREAT NEWS!!!!
>
> Glad to hear another doctor is using dissolvable plates. Carmen
Rae has
> them in her head after her cranial surgery on June 12th. I
will warn you
> though, when the plates start to dissolve, screws come lose and sometimes
> stick out. Carmen Rae has this strange lump above her eye that
is kinda
> jagged. Plastic surgeon says it is perfectly normal; so on
we go. It was
> a little weird before we knew what it was. Just thought I would
pass this
> on.
>
> Robin Hill
>
> ----------
> > From: Thomas Troudt <ttroudt@SPRYNET.COM>
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Derek's successful surgery!!!!!
> > Date: Wednesday, August 26, 1998 5:24 PM
> >
> > Hello to all,
> > Derek had his craniofacial surgery on Thurs.
the 20. We were home by
> > Sunday!!! He now has a wonderfully shaped head and
the lumps and bumps
> are
> > gone. The surgeons used the new dissolveable plates and no
metal was
> used.
> > How amazing new technology is. Derek is roaring to go and
if he didn't
> have
> > to wear a helmet, you wouldn't be able to tell that he had anything
done
> to
> > him a week ago. No swelling, no pain, no nothing. Yipee!
Thankyou
> everyone
> > for your kind responses and your prayers. Love, the
Troudts in Greeley
> > Colorado
=========================================================================
Date: Tue, 1 Sep 1998
20:39:49 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: aperts
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="------------B8FF428DA8F6EA225CD1CAF7"
--------------B8FF428DA8F6EA225CD1CAF7
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
ANGELIQUE PEZZIMENTI wrote:
Hi from Kelly Spadini! I just wanted to write about the teasing problem.
I don't get teased very often. I have been going to school with the
same
people my whole life. I am now a junior(11th grade) so I don't have
much
longer to go. I do get stared at in public places, though. I either
stare back or just go on with my business. Most of the starers are
little people so I try to be understanding, as little people are famous
for being curious. It does get annoying, though.
Talk to ya later,
Kelly
> hello everybody just want to ask a question when your children
with
> apert go to school do they cope alright or are they teased
.this is
> my worst fear i dont want anyone to hurt my little one i know that
> other children can be very cruel.
> angelique
--------------B8FF428DA8F6EA225CD1CAF7
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit
<HTML>
<BODY BGCOLOR="#FFFFFF">
ANGELIQUE PEZZIMENTI wrote:
<P>Hi from Kelly Spadini! I just wanted to write about the teasing
problem.
I don't get teased very often. I have been going to school with the
same
people my whole life. I am now a junior(11th grade) so I don't have
much
longer to go. I do get stared at in public places, though. I either
stare
back or just go on with my business. Most of the starers are little
people
so I try to be understanding, as little people are famous for being
curious.
It does get annoying, though.
<P>Talk to ya later,
<BR>Kelly
<BLOCKQUOTE TYPE=CITE> <FONT COLOR="#000000"><FONT
SIZE=-1>hello everybody
just want to ask a question when your children with apert
go to school
do they cope alright or are they teased .this is my worst fear i dont
want
anyone to hurt my little one i know that other children can be very
cruel.</FONT></FONT><FONT COLOR="#000000"><FONT SIZE=-1>
angelique</FONT></FONT></BLOCKQUOTE>
</BODY>
</HTML>
--------------B8FF428DA8F6EA225CD1CAF7--
=========================================================================
Date: Mon, 2 Sep 1996
05:50:55 PDT
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: Longshot &
Darwin <Darwin1@CONCENTRIC.NET>
Subject: Re: aperts
In-Reply-To: <d62f498f.35ea9e79@aol.com>
MIME-Version: 1.0
Content-Type: text/plain; charset="ISO-8859-1"; X-MAPIextension=".TXT"
Content-Transfer-Encoding: 8bit
I am 24 years old and I also get teased. People do stare and sometimes
they laugh. It's very hard at times. One good thing is that I have my husband.
He has gotten me through from very hard times. I also have a good job that
I never thought I would have because of Apert's. I have learned to ingore
it and go on with what I am doing. To me it's not worth the effort to even
let the people know that they are getting to you. It does hurt but why
get the satisfaction of knowing they did hurt you?
My surgries have helped a great deal, too. People don't stare as much,
but maybe too it's the fact I feel alot better about myself. All the pain
was worth it to me.
We are all beatiful people. It's our friends, ourselves and family
who make us this way.
Hope everyone is well. Glad to hear Carmen Rae is home. Has anyone heard from BJ lately?
Rachel
=========================================================================
Date: Wed, 2 Sep 1998
10:32:08 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: rhartley@DZIS.COM
Subject: Dissolving Plates/Screws. (Andrew
Hartley born 4/30/98)
Mime-Version: 1.0
Content-type: text/plain; charset=us-ascii
Hi everyone,
Little Andrew (Born 4/30) had his Cranial vault remodeling,
done on July 27th. He also had the dissolving plates and
screws. We noticed that he also had strange bumps in
places. Upon inquiry we were told they would dissolve
and no longer be noticeable. Hands are a big topic lately
and we will probably have that done in the near future.
Would it be possible for someone to send me the list
of kids, especially the date of birth, so as to become more
organized in our compilation of data and filling system.
I have been doing some in-depth searches on the internet
lately and have found some good sites. I will get back to
everyone as soon I eliminate duplicate information etc..
Has anyone heard from the South African's lately.?
Regards,
Your friends,
Rich,Karen,Alex & ANDREW. PA,USA
=========================================================================
Date: Wed, 2 Sep 1998
12:35:38 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Tim and Carol
<tcgraves@BELLSOUTH.NET>
Organization: Home
Subject: homeschooling
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Are there any parents on the listserv that homeschool their
Apert child ???
=========================================================================
Date: Wed, 2 Sep 1998
14:36:39 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Dissolvable plates
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I never noticed any bumps or lumps with EvaJessie's orbit surgery last
year.
She had a flap cut from her forehead to harvest bone to build
the orbit
and advance it toward the front of her face. I heard about these
screws and
plates on the internet and pulled up a bunch of abstracts about them
which I
then took to our surgeon and asked if he would please use these (if
she was
an appropriate candidate for them). He hadn't ever used them
before, nor
had the hospital, but since I initiated the idea, our surgeon has made
them
almost standard practice now. Cool huh?
We used resorbable screws too, and after the surgery was over with,
the reps
from Lorenz who were there came looking for me and they gave me a plate
and
a couple of screws that were opened in OR and therefore no longer sterile,
so they said I could have them when I asked. I'll post some photos
of them
on EvaJessie's page shortly on the WideSmiles site.
Resa, thanks for the note about the newspaper article. I'm going
to check
that out.
Hope everyone is doing well.
Glad to hear Carmen Rae is home and doing well.
I have a few other notes to read.
Talk soon
Pat in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Wed, 2 Sep 1998
16:07:48 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Thornq@AOL.COM
Subject: Re: midface advancement
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Beth,
Thank you for the information. I did not realize that the jaw
is moved in the
mid-face advancement. I had never investigated what went on with
the mid-face
surgery because we were told that Andrew would probably not need one.
But now
that it is a possibility, I will be looking into it some more.
Thank you
again.
Lynn
=========================================================================
Date: Wed, 2 Sep 1998
15:12:21 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: tissue expansion
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hey Belinda,
I'm glad you've asked about tissue expanders. My son Jacob, 2 1/2 years
old, is on his third set. He has Apert Syndrome and was born with the
tulip
hands (no digits free).
This procedure was done at Children's Memorial Hospital in Chicago,
Illinois by Dr. Bruce Bauer. The tissue expanders were placed under
the
skin in the backs of the hands up toward the digits.
We chose this procedure to eliminate skin grafts and scarring. I believe
that there is alot less scarring in the groin area because they don't
have
to have the extensive skin grafts from that region. They can have some.
Jacob had to have one graft for the last digit separation (pinkie fingers).
But, that scar is almost completely gone because they actually took
a small
football-shaped section of all the layers of skin and then stitched
the
area back together.
As far as the pain issue. My son has a high tolerance as does most of
these
kids. But, you need to remember, weekly, if not more often, injections
for
the tissue expanders. We have chosen to inject Jacob at home. I know
Pat
takes EvaJessie to the doctor to have hers filled. Jacob is very tolerant
of the injections and, less than five minutes later, you'd never know
you
did anything. I don't feel that they get in the way. He has never seemed
to
mind them. He looks at them as they get bigger and wants to show everybody.
If you are interested in pictures, go to Jake's page on Teeter's Page.
I've
included pictures of filled expanders to give everyone an idea of what
to
expect.
If you want more information or the phone number to Jake's doctor for
your
doctor, you can email me privately at:
jkb@elpaso.net
Hope the information helps!
Laurie Bailey
----------
> From: NephiRose@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: tissue expansion
> Date: Monday, August 31, 1998 5:45 PM
>
> Hey guys,
>
> I've been hanging around. I don't usually say anything until
something
> pertinent hits me :) I have a couple questions regarding tissue
expansion. I
> want to make sure I got it right. Sarah V. (Utah) had hand
surgery last
month
> using skin graft. During that time I noticed some discussion
regarding
> tissue expansion with EvaJessie and others. EvaJessie was in
her cheek
(?)
> and there was another one who had one and it was in the hand.
The hand
is the
> one I want to focus on....I need more details. When I mentioned
tissue
> expansion for the next surgery in the hands to Dr. Garramone, all
I got
was a
> puzzled expression (yikes). He wanted more information.
>
> 1) Where was it done? And by whom?
> 2) Was in the hands of an apert child?
> 3) Is a situation of tissue expasion vs. skin grafting?
Or was it for
> another reason?
> 4.) If it is as in question # 3, does tissue expansion necessarily
have
less
> scarring?
> 5.) In terms of pain, which would be greater?
>
> I think that is all the questions I have. Any input would be
great. I
plan
> on giving the results of this to my doctor. Sarah V.'s next
surgery will
be
> six months from now to separate the ring and middle finger on both
hands.
>
> Belinda Vicars
=========================================================================
Date: Wed, 2 Sep 1998
16:18:57 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Thornq@AOL.COM
Subject: Re: Hello Friends!!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello Ann,
Thank you very much for all the information you sent me. I guess
I said it
wrong. Maybe it is an overbite. His bottom jaw is out a
little bit more than
his top. But not by much, so I don't understand the problem.
It is not
something you notice. But I think I will trust his ENT regarding
the tonsils,
which is why we see that doctor. We will find out in a couple
of weeks if
Andrew's tubes have fallen out.
Thank you again and it is great to be back.
Lynn
=========================================================================
Date: Wed, 2 Sep 1998
16:39:25 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Thornq@AOL.COM
Subject: Re: Carmen Rae is home!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Glad to hear that Carmen Rae is home. Now you can get things back
to normal
and back on track. Before you know it, she will be back to her
old self
again.
Lynn
=========================================================================
Date: Thu, 3 Sep 1998
13:27:07 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Update on Joanne
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Joanne sent this message to be passed on:
Hi.
I'm rather bummed. The tests I had taken on Monday came back
inconclusive. To quote the doctor, "I think I see a slight decrease
in
size." Two words in that sentence were unacceptable to me: think
and
slight. Next step is blood work in one week and another x-ray
in three
weeks from now. Thank God for insurance! I was able to
see the series
of x-rays, one from 97, one from two weeks ago and the one taken Monday.
The spot was not there last year. It looks like a jelly fish about
the
size of a quarter, an inch in diameter. I have finished the antibiotics
and will resume if the blood work indicates my antibodies have increased
since all of this started. I hate this waiting! I was on the
phone
constantly last night with friends and family wanting to know the
results. That's why I didn't contact you sooner. Please
share this with
the list. Thanks.
joanne
=========================================================================
Date: Wed, 2 Sep 1998
21:47:15 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Re: PICTURES
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello everyone! Zoey's Mom, Christina here. How do I go
about getting the
complete list for the picture exchange? I've got 50 names on
my list and I
believe I heard that it was over 60 names by now. I want to send
the rest of
the listserv family pictures of Zoey.
Christina
San ANtonio
=========================================================================
Date: Wed, 2 Sep 1998
22:01:25 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: CatnDon@AOL.COM
Subject: Fwd: FW: Adrienne Rus
Mime-Version: 1.0
Content-type: multipart/mixed; boundary="part0_904788085_boundary"
This is a multi-part message in MIME format.
--part0_904788085_boundary
Content-ID: <0_904788085@inet_out.mail.aol.com.1>
Content-type: text/plain; charset=US-ASCII
In a message dated 98-09-02 14:08:48 EDT, RusM@ioc.army.mil writes:
<< >
> Dear Don and Cathy,
>
> Hope all is well with you and your family. My purpose
for my note is to
> let
> all know that our daughter,
> Miss Adrienne, will be having, yet another, cranial surgery
on 3 Sep. It
> is
> scheduled for 9 hours and
> we hope and pray the little tike can hang in that long.
Our thought have
> been with everyone lately. The busy summer hasn't permitted
much extra
> time. Please pass this on as we can use all the prayers
in the world for
> Mr. Marsh, Dr. Kaufman, Dr. Soloman, the entire Team, and our
Adrienne.
>
>
Sincerely,
>
Mary and Allen Rus
>
Mary & Allen J. Rus
>>
--part0_904788085_boundary
Content-ID: <0_904788085@inet_out.mail.ioc.army.mil.2>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
Return-Path: <RusM@ioc.army.mil>
Received: from rly-st02.mx.aol.com (rly-st02.mail.aol.com [172.31.36.135])
by
air10.mail.aol.com (v49.1)
with SMTP; Wed, 02 Sep 1998 14:08:48 -0400
Received: from rly-za01.mx.aol.com (rly-za01.mail.aol.com [172.31.36.97])
by rly-st02.mx.aol.com
(8.8.8/8.8.5/AOL-4.0.0)
with ESMTP id
RAA03553 for <CatNDon@aol.com>;
Tue, 1 Sep 1998
17:30:38 -0400 (EDT)
Received: from emh5.ria.army.mil (emh5.ria.army.mil [147.217.3.105])
by rly-za01.mx.aol.com
(8.8.8/8.8.5/AOL-4.0.0)
with ESMTP id
RAA15343 for <CatNDon@aol.com>;
Tue, 1 Sep 1998
17:30:00 -0400 (EDT)
Received: by emh5.ria.army.mil with Internet Mail Service (5.5.2232.9)
id <R5VMJSZC>; Tue, 1
Sep 1998 16:27:57 -0500
Message-ID: <557390FC9EFCD111AF7700A0C996373BAF5D2E@emh5.ria.army.mil>
From: "Rus, Mary" <RusM@ioc.army.mil>
To: "'Cathy and Don Sears'" <CatNDon@aol.com>
Subject: FW: Adrienne Rus
Date: Tue, 1 Sep 1998 16:27:56 -0500
X-Mailer: Internet Mail Service (5.5.2232.9)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
> -----Original Message-----
> From: Rus, Mary
> Sent: Tuesday, September 01, 1998 4:24 PM
> To: 'Aperts1'
> Subject: FW:Adrienne Rus
>
>
>
> ----Original Message-----
> From: L-Soft list server at America Online (1.8d)
> [SMTP:LISTSERV@LISTSERV.AOL.COM]
> Sent: Tuesday, September 01, 1998 4:22 PM
> To: RusM@IOC.ARMY.MIL
> Subject: Rejected posting to APERT@LISTSERV.AOL.COM
>
> You are not authorized to
send mail to the APERT list
from
> your
> RusM@IOC.ARMY.MIL account. You might be authorized to
send to the list
> from
> another of your accounts, or perhaps when using
another mail program
> which
> generates slightly different addresses, but LISTSERV
has no way to
> associate
> this other account or address with yours. If you need assistance
or if you
> have
> any question regarding the policy of the APERT list,
please contact the
> list
> owners: APERT-request@LISTSERV.AOL.COM.
>
> ------------------------ Rejected message (29 lines)
> --------------------------
> Received: from emh5.ria.army.mil (emh5.ria.army.mil [147.217.3.105])
> by listserv.aol.com
(8.8.8/8.8.8)
> with ESMTP id RAA09749
for <APERT@LISTSERV.AOL.COM>;
> Tue, 1 Sep 1998 17:21:29
-0400 (EDT)
> Received: by emh5.ria.army.mil with Internet Mail Service (5.5.2232.9)
> id <R5VMJSY6>; Tue, 1 Sep
1998 16:19:42 -0500
> Message-ID: <557390FC9EFCD111AF7700A0C996373BAF5D2C@emh5.ria.army.mil>
> From: "Rus, Mary" <RusM@ioc.army.mil>
> To: "'Aperts Network'" <APERT@LISTSERV.AOL.COM>
> Date: Tue, 1 Sep 1998 16:19:41 -0500
> MIME-Version: 1.0
> X-Mailer: Internet Mail Service (5.5.2232.9)
> Content-Type: text/plain
>
> Dear Don and Cathy,
>
> Hope all is well with you and your family. My purpose for my
note is to
> let
> all know that our daughter,
> Miss Adrienne, will be having, yet another, cranial surgery on 3
Sep. It
> is
> scheduled for 9 hours and
> we hope and pray the little tike can hang in that long. Our
thought have
> been with everyone lately. The busy summer hasn't permitted
much extra
> time. Please pass this on as we can use all the prayers in
the world for
> Mr. Marsh, Dr. Kaufman, Dr. Soloman, the entire Team, and our Adrienne.
>
>
Sincerely,
>
Mary and Allen Rus
> Mary
& Allen J. Rus
--part0_904788085_boundary--
=========================================================================
Date: Thu, 3 Sep 1998
08:04:27 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Homeschooling
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
>Date: Wed, 2 Sep 1998 12:35:38 -0500
>From: Tim and Carol <tcgraves@BELLSOUTH.NET>
>Subject: homeschooling
>Are there any parents on the listserv that homeschool their
>Apert child ???
Tim and Carol
We started homeschooling Krista (now starting 5th grade) two years ago.
It was a long decision in the making but, after several years
experience, the right one for her. I'll try to outline
the reasons and
results as briefly as possible.
1. Academics. Krista was average or slightly above in some
areas
(reading, spelling, phonics, etc.) but well below average in others
(math, science). The discussion of the past week regarding math
fits
Krista to a tee. After school we (usually Mary) would have to
spend
literally hours going through the days work just to help her keep up.
Neither Krista nor us enjoyed this. Each year her standardized
test
scores (SAT or Iowa Basics) slipped a little lower.
This was in a private school, by the way. We talked often with
her
teachers and they said they were willing to help in any way.
However,
A) with a class of 20+ students they simply could not invest that much
personal attention in one child, and B) I don't think they
understood
Krista's ways of thinking and specific needs as well as we did.
It took
us a loooonnnng time to understand her ways of thinking and doing things
(and we still don't have all the answers) and it is understandable
that
a teacher would not be able to get it all figured out in the short
time
they had her.
We also talked with people in the public schools, both in the preschool
years and during her school years. They took one of two approaches
which totally frustrated us. One approach (mostly by the preschool
therapists) was to just throw a label at her (ADD or several others)
even though her doctors, etc. said this was not an appropriate
diagnosis. This was "comfortable" for them because they could
give it a
name, but it did nothing to decide how to deal with it. The other
approach (by the more professional evaluators) was to say (this is
a
true story!), "I've never run across a case quite like this and,
frankly, I don't know what we'd do." That didn't rank up there
in the
"acceptable answers" category. He wasn't saying Krista was odd.
Just
that he recognized she did have a different way of thinking through
things that he did not understand.
So in the end, we decided to try homeschooling. We reevaluate
it each
year, but so far we have seen no reason to stop. We have seen
very
definite improvements. She gets much one-on-one attention.
We can
correct her and guide her thoughts right on the spot rather than later
in the day or the next day. (In the discussion on math, somebody
mentioned that if there was a break of a few days, it seemed like all
the learning had been lost. Now we can catch it long before those
breaks occur.) And her standardized test scores have gone up
every year
since we started!
2. Socially. One of the standard arguments against homeschooling
is
the lack of socialization. This couldn't be further from the
truth. We
still live in an environment full of people. That means
we (and she)
interact daily with family, friends, neighbors, people at church, at
the
YMCA, in stores and on the street,...... We can't escape
the people
all around us, so there is no shortage of social interaction.
Some
respond positively to her and some negatively, just like anywhere else.
At school, Krista had a couple friends. And there were a few who
teased
her, as you would find anywhere. And most tended to kind of ignore
her.
Not necessarily on purpose or to be mean. That's just the way
it was.
Krista is more of a loner by nature anyway, so that was part of it.
And
with her arm and leg limitations, she couldn't keep up with the other
kids as they ran and played, so she just got left behind. For
those
reasons Krista experienced a definite DROP in her social skills,
not an
improvement, even though she was being "socialized."
Since we started homeschooling, this has reversed. I think she
is in an
environment where she knows she is totally accepted, rather than one
where that acceptance is always uncertain. As a result, she is
now more
confident in talking and playing with others. She is still quiet
and
somewhat of an introvert (I don't expect homeschool to make her an
extrovert - neither of her parents are). But her level of confidence
is
much higher. These are not just our own observations. Without
any
prompting from us, friends have said they notice the same thing.
In addition, it gives us more opportunity to guide her developing social
skills in appropriate ways rather than being influenced so strongly
by
the culture around her. And lastly, both Krista and Mary (she
does the
majority of the teaching) fell closer to each other than they did
before. Krista prefers homeschool over regular school, and our
two
other kids (one in first grade this year and the other still a
preschooler) have no desire to go to a school other than home.
Sorry this has gotten long. I hope it answers some of your questions.
Please feel free to write again (over the listserver or privately,
as
you prefer). When we first decided to homeschool it was a big
decision
and we were not positive it was the right one. In retrospect,
it has
definitely been the right choice. It is not easy, and requires
a large
commitment of time. And of course it costs a little money (nowhere
near
as much as a private school) while the public school uses your taxes
with little direct benefit to you. But it has been providing
Krista
with the education she needs.
Bob Horning
=========================================================================
Date: Thu, 3 Sep 1998
13:19:16 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: cohanal stenosis
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Has anyone out there had repair of cohanal (?spelling) stenosis.
Jacob
seems to be very small on the left side and one doc feels he could
go up
through the still open palate and scrap some bone away and open him
up
some. I remember a discussion awhile ago about stents but my
husband and I
don't really want to mess with that issue. Jacob is now scheduled
to have
palate repair in Oct. but if we want to do this we will have to get
it done
first. Any thoughts or comments would be appreciated.
Colleen and gang
=========================================================================
Date: Fri, 4 Sep 1998
09:01:59 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: FW: Wisdom
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
FYI--words of wisdom from an unknown source
___________________
I've learned - that you cannot make someone love you. All you can do
is be
someone who can be loved. The rest is up to them.
I've learned - that no matter how much I care, some people just don't
care
back.
I've learned - that it takes years to build up trust, and only seconds
to
destroy it.
I've learned - that it's not what you have in your life but who you
have in
your life that counts.
I've learned - that you can get by on charm for about fifteen minutes.
After that, you'd better know something.
I've learned - that you shouldn't compare yourself to the best others
can
do.
I've learned - that you can do something in an instant that will give
you
heartache for life.
I've learned - that it's taking me a long time to become the person
I want
to be.
I've learned - that you should always leave loved ones with loving words.
It may be the last time you see them.
I've learned - that you can keep going long after you think you can't.
I've learned - that we are responsible for what we do, no matter how
we
feel.
I've learned - that either you control your attitude or it controls you.
I've learned - that regardless of how hot and steamy a relationship
is at
first, the passion fades and there had better be something else to
take its
place.
I've learned - that heroes are the people who do what has to be done
when
it needs to be done, regardless of the consequences.
I've learned - that money is a lousy way of keeping score.
I've learned - that my best friend and I can do anything or nothing
and
have the best time.
I've learned - that sometimes the people you expect to kick you when
you're
down will be the ones to help you get back up.
I've learned - that sometimes when I'm angry I have the right to be
angry,
but that doesn't give me the right to be cruel.
I've learned - that true friendship continues to grow, even over the
longest distance. Same goes for true love.
I've learned - that just because someone doesn't love you the way you
want
them to doesn't mean they don't love you with all they have.
I've learned - that maturity has more to do with what types of experiences
you've had and what you've learned from them and less to do with how
many
birthdays you've celebrated.
I've learned - that you should never tell a child their dreams are unlikely
or outlandish. Few things are more humiliating, and what a tragedy
it would
be if they believed it.
I've learned - that your family won't always be there for you. It may
seem
funny, but people you aren't related to can take care of you and love
you
and teach you to trust people again. Families aren't biological.
I've learned - that no matter how good a friend is, they're going to
hurt
you every once in a while and you must forgive them for that.
I've learned - that it isn't always enough to be forgiven by others.
Sometimes you have to learn to forgive yourself.
I've learned - that no matter how bad your heart is broken the world
doesn't stop for your grief.
I've learned - that our background and circumstances may have influenced
who we are, but we are responsible for who we become.
I've learned - that just because two people argue, it doesn't mean they
don't love each other. And just because they don't argue, it doesn't
mean
they do.
I've learned - that you shouldn't be so eager to find out a secret.
It
could change your life forever.
I've learned - that two people can look at the exact same thing and
see
something totally different.
I've learned - that no matter how you try to protect your children,
they
will eventually get hurt and you will hurt in the process.
I've learned - that your life can be changed in a matter of hours by
people
who don't even know you.
I've learned - that even when you think you have no more to give, when
a
friend cries out to you, you will find the strength to help.
I've learned - that credentials on the wall do not make you a decent
human
being.
I've learned - that the people you care most about in life are taken
from
you too soon.
I've learned - that it's hard to determine where to draw the line between
being nice and not hurting people's feelings and standing up for what
you
believe.
Source unknown.
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Fri, 4 Sep 1998
16:02:36 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: cohanal stenosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Colleen,
Evan had choanal stenosis. I is a narrowing of the nasal airway as
opposed to
closure (choanal atresia) Because his was so severe, he was trached
at 4 weeks
when he got his first upper respiratory infection. Last december when
the team
at Stanford was performing his cleft palate repair, they also decided
to open
up the stenotic nasal airways ans place stents (small rubber tubes)
in. The
cleft palate affords easier access to the area of bony narrowing of
the
airway. The stent(s) stays in several weeks so the scarring can take
place
around it and keep the hole open. They didn't require too much care-
just were
occasionally bothersome and exacerbated his "stupid baby trick" of
eating or
drinking something and having it come out his nose (Chocolate pudding
won the
grossout award). I'm sure there would have been more stent care required
had
he needed that airway space to breathe but with the trach that was
unnecessary. He does much better now and it has helped his speech efforts
immensely as well as his tolerance for the Passy Muir speaking valve.
I can't
remember how old your son is but one thing we didin preparation for
the cleft
palate repair was to get his from a bottle to a sippy cup as strong
sucking is
contraindicated after this surgery.
This was, by far, the easiest of all the surgeries we've dealt with.
partly
due to a change of venue, but it was a cakewalk compared to the cranio
or hand
surgeries!! Hope the same is true for y'all.
Marianne
=========================================================================
Date: Sat, 5 Sep 1998
00:43:30 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: cohanal stenosis
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Colleen,
My daugher also has choanal stenosis. Her left side also is almost
completely blocked. SHe has been a borderline for trach for a
long time.
She looks just fine - healthy little poop, but her breathing has been
tough. WE hae done everything to avoid a trach because she is
thriving so
well during the days. She just had her tonsils and adenoids out
which has
helped immensly. Before that she has always had a tough time
breathing at
night. She has gone through 2 sets of stents with brief success
afterwards. If your Dr can scrape the bone, and put stents in,
in my
opinion, it cant hurt anything and might definately help with the bone
formation and breathing. I asked our ENT if he could do this
on Brenna,
but she did not have a cleft so he did not have access to work on those
bones. If it sounds like it would improve the airway, I think
it would be
beneficial to try.
p.s. Stents were kinda hard for us to deal with the second time but,
they
did help.
Good luck, Robyn J.
At 01:19 PM 9/3/98 -0400, you wrote:
>Has anyone out there had repair of cohanal (?spelling) stenosis.
Jacob
>seems to be very small on the left side and one doc feels he could
go up
>through the still open palate and scrap some bone away and open him
up
>some. I remember a discussion awhile ago about stents but my
husband and I
>don't really want to mess with that issue. Jacob is now scheduled
to have
>palate repair in Oct. but if we want to do this we will have to get
it done
>first. Any thoughts or comments would be appreciated.
>Colleen and gang
>
>
=========================================================================
Date: Sat, 5 Sep 1998
10:35:13 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: RANGERJJC@AOL.COM
Subject: Re: Dissolving Plates/Screws.
(Andrew Hartley born 4/30/98)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I know very much about resorbing plates and screws. If you would
like more
information try www.lorenzsurgical.com - look for lactosorb.
=========================================================================
Date: Sat, 5 Sep 1998
10:38:36 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: RANGERJJC@AOL.COM
Subject: Re: Dissolvable plates
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I'm glad that you had information on Lactosorb. If you would like
more info
on them please let me know. They certainly help.
=========================================================================
Date: Sat, 5 Sep 1998
21:01:51 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: jamerman@UTI.COM
Subject: test
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Just checking to see if my mail is working or if no one has been talking.
Also for those of you who has not received Nick's picture, please let
me
know so that I can get them out. I know that there is a few that has
not
got one. You can do this privately if you want.
I have also got the blues today. Must be my day in the barrel. My husband
had to go back to India yesterday after being home for three weeks.
So now
I am back to being the married widow. He won't be back home now until
right
before Christmas. Needless to say, Nick and I can get pretty lonely
sometimes. and speaking of lonely.
My neighbors are going to be moving to the Dallas- Fort Worth area
in three
to four weeks and it is really going to be tough on Nick. My neighbors
son
which is Nick's best friend are going to be gone forever now. Gary
, the
little boy has never "seen" Nick's birth defects. These two boys are
together constantly and I just don't know how I am going to handle
Nick.
There is just not anyone else here in the neighborhood for Nick to
play
with. There has been four houses including my moving neighbors that
has
sold in the last few months and not one kid Nick's age.
Hopefully tomorrow will be a better day. Thanks for letting me unload.
Judy
jamerman@uti.com
=========================================================================
Date: Sun, 6 Sep 1998
15:30:42 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Maths
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Ann,
I know I'm a little behind in responding, but have not been able to
get to the
computer for any length of time. I'm hoping to catch up today.
My non-Apert
child is 9 yrs. old and in 3rd grade (we did pre-K). She too
has difficulty
with her math concepts. She usually keeps her grades in the 90's
but still
misses very simple problems. She still tries to use her fingers
and can't
seem to memorize the answers. We do flash cards and written exercises
but I
can see where we are going to start having bigger problems with the
multiplication and division if we don't get a handle on this now.
I had
forgotten about the multiplication table you sent. I used the
same when I was
learning math and found it very helpful. I am going to download
it and see if
that helps. I'm not sure if we have a real learning deficit or
if it is just
lack of attention. I am going to pay a lot closer attention to
the things
that have been discussed and see if they apply to our situation.
Hope all is
well at your house.
Brenda
Houston
=========================================================================
Date: Sun, 6 Sep 1998
16:00:00 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: fusion of cervical vertebrae?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Janine-
This is very interesting. I don't know that anyone has ever looked
that
closely at Jonathan's spine. He has had several MRIs but they
were all of the
cranium as far as I know. My mother (65) is going through a very
tough time
with her vertebrae. She has some fused areas and the of the majority
of the
vertabrae are degenerated and have arthritis completely around the
spine. She
has been to 4 neurosurgeons and they said they could do surgery and
that it
would be a tough road to recovery with no guarantees on if the surgery
would
be successful. She is opting not to have the surgery but lives
in constant
pain. I want her to move from Md. here with us but she doesn't
want to be a
burden and doesn't think she could be much help to me with Jonathan
because
she can't even lift him. I wish I could help her. I got
off track here--I am
definately going to mention this at Jonathan's next ortho appt.
We haven't
been there since he was 1 since we have had so many surgeries to deal
with.
He walks just fine and doesn't seem to have a problem with his shoulders
at
this point but it is definately time to get a check up. Let me
know what else
you find and thanks for the info.
Brenda
Houston
=========================================================================
Date: Sun, 6 Sep 1998
16:05:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: The Great Photo Exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
We have received 33 photos to date and I have only 52 on my mailing
list.
Does anyone have an updated list for the photo exchange? I've
made additional
copies to send to anyone I may have missed. Just let me know.
Thanks.
Brenda
Houston
GSieb91515@aol.com
=========================================================================
Date: Sun, 6 Sep 1998
16:17:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Carmen Rae is home!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
So glad to hear that Carmen Rae is home and doing better. That
was some virus
she had. Hope things at your house are getting back to normal
and your family
is catching up on rest.
Best wishes,
The Sieberts
Houston
=========================================================================
Date: Sun, 6 Sep 1998
16:26:01 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: FW: Adrienne Rus
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Mary & Allen-
Sorry I am late in sending my best wishes to Adrienne on her surgery
on 9/3.
We just went through an 8 hr. cranial vault last March and I remember
all too
well how rough the wait was. We hope and pray that everything
went well and
the surgery was a success. Please let us know when you get a
chance.
Best regards,
The Sieberts
Houston, TX
=========================================================================
Date: Mon, 7 Sep 1998
13:33:11 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Maths
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Brenda
>I'm not sure if we have a real learning deficit or if it is just
>lack of attention.
This is the difficulty isn't it! And the thing is, if we just put it down as a temporary issue and assume the child will catch up again later, and then find they haven't caught up, there is then a huuuge gap that needs to be filled, with all the accompanying feelings of inadequacy that may present for the child.
And I don't know about your family, but what with swimming, Brownies, family and friends, I already have trouble making sure the homework gets done without having to enrol her in special classes to make sure she catches up with the gaps that have developed because we didn't get onto things quickly enough!
It's a tough balancing act that we can really stuff up if we play it the wrong way.
We're all fit and well here and enjoying the longer days as we begin to head towards summer.
Ann
NZ
=========================================================================
Date: Sun, 6 Sep 1998
22:12:32 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: foster <foster@ICONTECH.COM>
Subject: Hi to all our friends
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Sorry that I have not written sooner to let everyone know how Billy
is doing.
I talked to Collen Jones last weekend and she reminded me that I have
not
written to say how he is doing and she was concerned.
Anyway he is doing much better than last time I wrote but is still not
himself yet. He has a virus which has knocked him for a loop.
The doctor
who is covering for our doctor is not sure what it is but he is
doing a
great job. He had a low grade fever and a terrible rash which covers
his
neck and chest and had alot of trouble breathing. As of today he is
not
running any fever and is much better with his breathing. The rash is
going
away slowly and he is eating very well again. The last two weeks have
been
awful but each day things get better. He will have a sleep study done
in a
few weeks when he is over this mess. I have not read all of the emails
from
a awhile ago so I'm not up on everything happening but, I hope everyone
is
doing well.
I want to say that I received Brookes picture and was very happy to
see this
little sweetheart.
On Monday one of my daughters put her hands threw our storm door while
having a heated argument with her sister and made a real mess out of
her
right arm. We were at the hospital 5 hours getting exrays to be sure
there
was no glass in any of the cuts and a bunches of stitches. I stick
by my
statement that I have made since our girls started to get older and
that is
"Girls are worst than boys any day". I am only grateful that she is
ok. God
was surley watching over her that day.
Anyway school is back and the days are pretty so busy but I hope
to read
all of the mail this week.
I do have one concern with Billy and that is he has been bumping his
head an
awful lot since he is waiking around the funiture. Not on purpose but
he
seems to always hit his head first before the rest of his body and
sometimes
he hits it really hard. I know his head is bigger and heavier but I
am
concerned. Has anyone else had this problem? And how will he ever walk
without falling and hitting his head? His next cranial appt. is not
until
the end of Sept.
Karen(PA)
=========================================================================
Date: Sun, 6 Sep 1998
23:55:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: Hi to all our friends
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Karen wrote:
> I do have one concern with Billy and that is he has been bumping his
head
an
> awful lot since he is waiking around the funiture. Not on purpose
but he
> seems to always hit his head first before the rest of his body and
sometimes
> he hits it really hard. I know his head is bigger and heavier but
I am
> concerned. Has anyone else had this problem? And how will he ever
walk
> without falling and hitting his head? His next cranial appt. is not
until
> the end of Sept.
>
> Karen(PA)
Jacob also would fall and hit his head first on things (still does &
he's 2
1/2). My husband and I have decided it is because with Jacob's hands
being
the tulip kind when he was born, he didn't use them to help stabilize
himself because he had problems with ingrown nails and they hurt alot.
Therefore, it is not a reflex for him to catch himself with his hands.
He's
getting alot better at it but, I think it will take time.
If you are concerned about him hurting himself, call your doctor. It
never
hurts to ask. We did and were told, and I quote, "short of dropping
him off
a building, he's put together very solidly." We were very relieved
because
at that time, he was just starting to walk and having lots of accidents.
Hope it helps!
Laurie Bailey
jkb@elpaso.net
=========================================================================
Date: Mon, 7 Sep 1998
08:07:12 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: Hi to all our friends
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Since Jordan has been walking he is ALWAYS bumping his head......I think
its
just the whole balancing act...he, of course, dose it more when hes
tired...he
just falls over and lays there on the floor for a bit of a break. Corners
are
a nightmare, but we have covered them the best we can. I think this
is just a
normal thing...and nothing we can really do about it...our neurosurgeon
told
us it was no big deal..all kids fall when learning to move about (like
tipping
over when learning to sit up) and since the remaining soft spot is
on top of
his head...not on the forehead or side of his head he should be fine
b/c hes
not doing bomber dives (YET!!!!!!) glorified headstands.....
But its nerve wracking to say the least...his first true goose egg sent
me in
a frenzy to the neurosurgeon......all he could do is laugh and say
that he was
a typical little boy and there would be many more where this came from.
He
obviously has his dads energy and gusto w/ his moms sense of
coordination...SCAREY!!!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Mon, 7 Sep 1998
11:44:47 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Copperhd87@AOL.COM
Subject: Head bumps
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Not long after Mitchell's cranial surgery, he tripped and hit his head
on a
door facing. The resulting bump was larger than a silver dollar
or poker chip
and was very squishy. Our pediatrician saw it at a previously
scheduled
appointment and was quite concerned, but when we called Dr. Marsh's
office,
they said it was quite normal. It lasted about two weeks.
We noticed one day
that it was finally getting smaller, and the next day it was gone.
Poof!
Mitchell has been having loose bowel movements ever since his cranial
surgery
in May. At first, we thought it might have something to do with
the
antibiotics or the healing process, but now we're starting to get concerned.
Does anyone have any experience with this?
Glad to hear that Billy is doing better. Hope he continues to improve.
Resa
=========================================================================
Date: Mon, 7 Sep 1998
17:03:27 +0000
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>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Head bumps
In-Reply-To: <59dc6091.35f3ff6f@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
> Mitchell has been having loose bowel movements ever since his cranial
surgery in
> May. At first, we thought it might have something to do with
the antibiotics or
> the healing process, but now we're starting to get concerned. Does
anyone have
> any experience with this?
Could it be coincidental? Has he been drinking lots
of juice
since the weather has been hotter? I really have to watch my
3 year
old's consumption of juice. I have to dilute it and even then
he can
get really loose stools if he drinks too much.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Mon, 7 Sep 1998
18:16:37 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: lmaclean@NETCOM.CA
Subject: head bumps/bowel movements
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi all,
Amy fell alot more than her brother did when she was younger.
I noticed
a difference after she had tubes in her ears. Her balance improved
immensely but she still tends to sport more bruises than I recall him
having! She also never used to catch herself with her hands and
if
it wasn't her head receiving another bump it was her mouth getting
hit.
Amy's bowel movements were always affected after surgery. Very
loose and
numerous - up to five a day. Normal for her until about 5 years
old was
about three BM's a day. Her pediatrician thought it may be related
to her
being a mouth breather. He thought it dried her out and therefore
she
drank more fluids than the average child. He said it would improve
with
age as a preschoolers digestion system works quicker than an older
child
thus not as much time to absorb the water when her food was digesting.
As you get older it the food you are digesting remains in your intestinal
track longer, more time for the fluid to be absorbed and bowel movements
become firmer. He said we could cut back on her fluid intake
but I
figured if she was thirsty she should be able to drink. The area
that it
affected was her toilet training took longer.
I was very emotional on Friday as it was Amy's first day of grade one.
I
guess it was a real milestone. Up to now she has been in early
intervention programs and to see her in a 'regular' grade one class
(if you can call a multiage classroom with 60 grade 1,2 and 3's in
it
regular) was a dream come true. I was higher than a kite all
day and
very proud of her accomplishment. She was very excited too!
Pat can you e mail me the author of A Child in Pain. I had to
delete then
reinstall my internet program so lost all my files....
Leanne
=========================================================================
Date: Mon, 7 Sep 1998
19:07:43 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: JobeCST@AOL.COM
Subject: Re: tissue expansion
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi everybody,
I don't know anything about tissue expansion except that Dr. Genecov
said he
looked in to it and that it had not been proven very sucessful
in Apert kids,
especially since they have a lot of skin on other places of their body
to take
skin grafts from. Tyler had his skin grafts done Aug. 20th
and there doing
good but his hand splint are rubbing blisters on his new fingers. Anyone
else
had this problem? The question on growing the skin cells, Genecov
told me
that that was mostly for burn victim because they don't have much skin
and it
hard to have any skin to graft. I would like to learn more about
this to so I
can have a list of question when Tyler goes back for his 2 week appt.
I'm curious too!
Stacey Jobe
=========================================================================
Date: Mon, 7 Sep 1998
19:54:06 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: JobeCST@AOL.COM
Subject: Re: Hi to all our friends
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Yes I think girl's are harder than boys any day. I thank the Lord
every day
that he gave me a little boy. At least I know what to do with him!
Tyler's
had a few bump's on his head. He even fell off the bed with his arm
cast on.
But my Doc. told me the best way the tell if somethings wrong is how
the child
act's after the bump or fall. Tyler cryed after he fell off the
bed, but it
was a scared cry, and in 5 min. he was in his walker running through
the
house. Hope this helps!
The Jobe's
=========================================================================
Date: Mon, 7 Sep 1998
21:43:18 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: THE JOBE'S via
the Virtual Florist <JOBECST@AOL.COM>
Subject: Virtual Flower Bouquet Delivery
THE APERT LISTSERV,
This message is to inform you that THE JOBE'S has created a
Virtual Flower Bouquet(tm) for you at the Virtual Florist(sm) web site.
Your Virtual Flower Bouquet can be viewed anytime during the next
two weeks by connecting your World Wide Web browser to the following
URL:
http://www.virtualflorist.com/pickup?GDU8819
If you have difficulty getting to this URL, or do not have access
to a web browser, then send an e-mail to 'help@virtualflorist.com'
and our mail system will send an automated reply with a more detailed
set of instructions.
Enjoy your flowers!
The Virtual Florist
____________________________________________________________________
Please send any replies to: JOBECST@AOL.COM
The originator of this item was logged into IP Address 152.163.213.204
at 21:43 EST.
____________________________________________________________________
=========================================================================
Date: Tue, 8 Sep 1998
13:43:26 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Postop Bowels (was: Head bumps)
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Resa
>Mitchell has been having loose bowel movements ever since his cranial
surgery
>in May. At first, we thought it might have something to do with
the
>antibiotics or the healing process, but now we're starting to get
concerned.
>Does anyone have any experience with this?
Amy had this after one of her surgeries and it was identified as an infecting organism (rotovirus from memory) that she had picked up in hospital. The staff automatically denied any possibility that she could have caught it in hospital, but as she hadn't been anywhere else its origins were obvious. It eventually worked its way through but was not nice to deal with, particularly on top of everything else.
May to September is a heck of a long time though. Have they cultured
anything?
Ann
NZ