=========================================================================
Date:         Sat, 1 Aug 1998 21:08:37 +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:      Canadian Toronto Moose
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

For those Canadian members of our Family - We have just had an entertaining evening watching the Canadian Toronto Moose play the last of three ice-hockey games against the Auckland All-Stars.  The Moose lost the game 6-4 but having won the previous games, won the series.

This was courtesy of Ken Mulgrew, one of the Moose, otherwise known as Lefty.  He and some of the team came to Amy's school to talk to the children.  When I saw he was missing his right hand I had a chat with him about LittleLimbs, and he promptly offered to get us tickets.  He is a good ambassador for his country - though on the ice he is not quite as kind to the opponents!!

Ken met with us during the breaks and had his photo taken with Amy and 3 of the other children, and at the end gave Amy his medal, which she is very pleased about.

We have never seen ice-hockey played before and are amazed at the speed and the amount of physical contact.  I was never sure whether to watch the puck or the acrobatics.

Amy says "It was fun for me".

Well done Toronto.
 

Regards
Ann
NZ

ps We live in Peter Mulgrew Street - apparently Peter is/was Ken's uncle!  (We was one of our famous explorers but died on Mt Erebus when the plane crashed - some of you may remember the event.)
=========================================================================
Date:         Sat, 1 Aug 1998 19:54:23 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:         Patricia Smith <Patbrat718@AOL.COM>
Subject:      Jasmyn's surgery
Comments: To: Mobilecac@aol.com, Ahaynes120@aol.com, Zoowtchr@aol.com,
          Sassy4by@aol.com
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Well, we are due to go into surgery on tuesday....and as of last night, Jasmyn
is running a fever of 101 and has flu symptoms.  We would appreciate all the
prayers we can get to not have this one cancelled.  Of course I don't want her
going into this thing with a bad start, so what I'm really asking is for
prayers that she get through this and over it before we have to report on
Tuesday.

Thanks All,

Jasmyn's worried Mommy (Patti)
=========================================================================
Date:         Sun, 2 Aug 1998 03:38:03 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:         Diane Youngblood <CoH1862@AOL.COM>
Subject:      Re: Pictures
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

I too am guilty of being late on sending pics. They will be in the mail soon.
Please be patient. I love the ones we have gotten so far. Boy do we have some
beautiful children. Mallory loved reading about each one and I think she
enjoyed knowing that she is not the only one with Apert's.Good luck on all the
surgeries coming up.
                                                                         Love,
                                                                         Mallo
ry and Diane
=========================================================================
Date:         Sun, 2 Aug 1998 07:19:57 -00700
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:         Felipe Ize and family <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject:      Friends are angels - from Felipe Ize and family

Guess what!! You have just received an animated greeting card from Felipe Ize and family
You can pick up your personal greeting by connecting to the following WWW Address

<A HREF="http://www.bluemountain.com/cards/box3532a/my827nfhkzyhkci.htm">http://www.bluemountain.com/cards/box3532a/my827nfhkzyhkci.htm</A>

(Your greeting card will be available for the next 60 days)
This service is FREE!  :)  HAVE a good day and have fun!

____________________________________________________________
Accessing your card indicates your agreement with our Website Rules
posted at the bottom of the following Web location: (You're welcome to send a
free card to someone at this location) http://www.bluemountain.com
=========================================================================
Date:         Sun, 2 Aug 1998 13:04:18 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Patricia Smith <Patbrat718@AOL.COM>
Subject:      Amy's adventure
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Wow Anne, sounds like you all were destined to meet.  I picture Amy focusing
on that medal for years and putting on the blades herself one day!  I am sure
that Ken and Amy both touched each other's lives.  How wonderful!

Best wishes,

Patti
=========================================================================
Date:         Sun, 2 Aug 1998 19:22:26 -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:         JMuggli <jmuggli@CVTV.NET>
Subject:      Sarah Elizabeth LeCara
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 8bit

Sarah will undergo a total vault reconstruction and Mid-face advancement (LeFort III) on August 5.  She will be going to Medical City in Dallas .  Dr. Ken Salyer will be preforming the surgery.  Please keep her in your prayers.  We will be leaving Monday for Dallas.
Hope everyone who has had surgery recently is doing fine.  Sorry to hear that Derek's surgery was cancelled.  Call me superstitious, but that is one reason I haven't posted Sarah's date until now!  The anxiety is too much!!
Love to all,
Jennie Muggli
Sarah's Nana
=========================================================================
Date:         Sun, 2 Aug 1998 22:57:31 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Christina Mathis <Nodrmat26@AOL.COM>
Subject:      Zoey's surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Zoey's Mom here and just wanted to let everyone know that Zoey's surgery went
very well.  She recovered like a trooper.  The surgeons were very pleased and
as soon as her cast is off, I will find out how pleased I am.  I tried to
write this on Friday night (after we got home), but Zoey was so restless, I
couldn't get through it, so I decided to write later.  I will be praying for
little Sarah that her surgery goes well.  I remember Zoey's head surgery and
the anxiety was awful, but she did so well.

Goodnight,
Christina
San Antonio
=========================================================================
Date:         Mon, 3 Aug 1998 16:19:45 +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:         Carol or Jason <carolh@HOTKEY.NET.AU>
Subject:      Re: Winter Virus/Pictures
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi Everyone,

Well Ill be sending out my next lot of pictures this week sorry they are so
slow but as I am so far away I do a dozen at a time and think I might be
half way through by now.

I have only received about 15 photos so far and would love to receive more
as I feel that this is such a fantastic idea specially for Ashleigh as she
will be able to see all these other friends and not feel alone.  Im just so
sorry that there is nobody here in Australia who keeps contact which does
make me feel a little lonly but at least I have you guys there.

I would like to know if anyone or maybe everyone has had trouble with winter
viruses like RSV and croup or just flu as every year I seem to go through
such a scare with Ashleigh and have ended up in hospital by ambulance the
last 2 years one year with croup and last year with RSV,  Last week I though
she had RSV again she couldnt stop coughing and was choking and throwing up
from coughing so much she was a very sick girl but the last 2 days seems to
be pulling out of the worst, still coughing but no more temps.  I am sick of
hybernating over the cold months because I am too scared to take her out of
the front door incase she catches anything am I being just paranoid.

DOES THIS EVER GET BETTER  as they get a little older is what I would like
to know sure colds are always around but are they always so severe.

I am feeling very pregnant at the moment but have still 12 weeks to go and
my stress level is really bad as she did not sleep for four nights with this
and I am still working for another 6 weeks and sometimes feel that I am
going to fall apart but like you all Im hanging in there.  I have my eldest
son turning 18 this week so I will be busy organizing his birthday, I hope I
dont get BLOW OUT after all this.

SORRY FOR THE WINJING JUST LETTING OF SOME STEAM!!!!

GOOD LUCK TO ALL HAVING SURGERIES TAKE CARE
CAROL
=========================================================================
Date:         Mon, 3 Aug 1998 01:06:09 -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:         "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject:      Re: Teeter tonsils
MIME-Version: 1.0
Content-Type: text/plain

I'm late in responding to this message, but want to tell Teeter this
message:

"YOU GO GO GO GO!!!!!!!!!!"  I hope that our Jackie Lynn will have your
enthusiasm about hospital visits when she is your  age!!
I just find this remarkable!!!!  You are a brave girl and my hero!!!!!

                                        Jackie's Mom, Kathy
=================================================================
Mark Wittenburg                                           Senior Network
Engineering Specialist
City of Tempe
http://www.tempe.gov/
602-350-8237
markwi@tempe.gov

> ----------
> From:         Don Sears[SMTP:dsears@SCRS.STATE.SC.US]
> Sent:         Wednesday, July 15, 1998 5:52 AM
> To:   APERT@LISTSERV.AOL.COM
> Subject:      Teeter tonsils
>
> Hi everyone -
>
> Welcome to all our new list subscribers.  We're just returning from
> another short vacation at the beach.  Judy, Teeter kept saying that
> you
> and Nick were 'missing.'
>
> We've been concerned for a while now about the size of Teeter's
> tonsils
> and her snoring, and more and more lately she complains (even when she
> first wakes up) of being tired.  People ask her how she is doing and
> she
> tells them she is worn out.  So we scheduled a visit to the pediatric
> ENT associated with our craniofacial group, and he saw her Tuesday
> afternoon (yesterday).  I think Teeter won some kind of Grand Tonsil
> prize for her right one.  The doctor took a lot of time and explained
> the narrowing of the bony part of the nasal airway and how the
> enlarged
> tonsils and adenoids make it even harder to breathe.  She goes in
> Friday
> to have them removed, with an overnight observation period.
>
> Pretty funny, when we first spoke with the ENT we explained about the
> discussions we've followed here on the listserv regarding tonsils,
> sleep
> apnea, sleep studies, etc., and the details of Teeter's sleeping
> habits
> (excessive snoring, brief pauses in breathing, etc...)  We said, so
> what's the first step, do you want a sleep study?  He laughed and
> said,
> no, why bother?  He said we'd done our own sleep study and told him
> everything he needed to know.
>
> So now Teeter could not be happier.  She's been going through a
> hypochondriac phase lately, obsessed with the internal workings of the
> human body (she can name all the parts of the digestive system:  Your
> mouth, esophagus, stomach, small intestine, large intestine....and
> your
> BUTT!) So she is completely thrilled to be going to the hospital
> again,
> and she thinks she knows everything about having one's tonsils
> removed.
> She is also very excited about her first loose tooth and had her first
> visit to the family dentist last week.
>
> We're looking forward to a quiet weekend, hopefully I'll get some web
> pages out there.  Janine, Emily is next!!!!!!
>
> -------Don
>
=========================================================================
Date:         Mon, 3 Aug 1998 01:11:59 -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:         "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject:      Re: teeth
MIME-Version: 1.0
Content-Type: text/plain

I know I am late asking this question, but it is hard for me these days
to keep
up with the mail on this network, my apologies.....

Jackie Lynn has a "submucous pallete" and had a difficult time growing
her
teeth in as most everyone else.  What worries me is that she seems to be

growing two brand new front teeth right smack dab in the middle of the
roof
her mouth!!!!!!  Has anyone else had this?  And has anyone else been
diagnosed as having a "submucous pallete"?  Forgive the spelling...

Looking forward to any input.....we can't get into the dentist for 4
months!

P.S.  Anyone else having as much fun trying to brush teeth as us?

                        Thanks for listening,
                                Jackie's Mom,
                                        Kathy
=================================================================
Mark Wittenburg                                           Senior Network
Engineering Specialist
City of Tempe
http://www.tempe.gov/
602-350-8237
markwi@tempe.gov

> ----------
> From:         Marianne Camous[SMTP:Camous@AOL.COM]
> Sent:         Wednesday, July 08, 1998 1:04 AM
> To:   APERT@LISTSERV.AOL.COM
> Subject:      Re: teeth
>
> In a message dated 7/5/1998 10:03:48 PM Pacific Daylight Time,
> Nodrmat26@AOL.COM writes:
>
> << My question about teeth is that Zoey is 17 months old and still has
> not one
>  tooth yet.   Anyone had that experience.   >>
> Ditto!  And we have friends who have an adopted daughter without a
> craniofacial syndrome who was toothless until 18 months...everything
> else
> being normal. Also, Evan got his upper central incisors first, before
> the
> lowers...fairly unusual. One of his nurses told us of an old
> pittsburgh
> tradition that the person who finds the first tooth has to buy the
> first pair
> of walking shoes. Figured with as long as it was taking we'd be in
> Nike's  ;)
>
> Marianne
>
>  just got his lower bicuspids at 2.
>
=========================================================================
Date:         Mon, 3 Aug 1998 07:07:18 -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: Thank 's for the pictures
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Dear Friends:

I just wanted you to know how much I am enjoying the pictures everyone
send.  I organized Seth's album a few weeks ago.  Everyone's picture is
labeled and in alpha order.  The album is next to our computer so I can
look at the sender's child's picture when I read email messages.  I am
starting to have a mental picture of each child in my mind.  It makes me
feel so much closer to everyone.

Thank you so much for taking the time and effort to send the lovely
pictures of your children.  Whenever I talk to Seth about a child I show
him his or her picture.    Seth and I spent quite a bit of time a few
nights ago looking at EvaJessie's picture and discussing her up coming
surgery.  I think that it helps him to realize that he isn't the only child
who has to under go surgery and medical treatments.

Warmly, Dori

Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date:         Mon, 3 Aug 1998 08:23:03 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Sarah Elizabeth LeCara
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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We will keep Sarah....and parents of course...in our thoughts and prayers this
coming week. Just think, this time next week it will all be over!!!!!

Glad to hear Zoey is recovering nicely....having the bandages/cast removed is
always a fun part of these procedures. Like a little gift every few months.

I wanted to post a litle update about Jordan for those fixing to go through
the hand surgeries...and of course everyone else.....He is doing very well and
I am very proud of him. He has both thumbs and pinkies free and he has amazed
me with waht he can do...from feeding himself toast, to holding a cup....one
thing I will NEVER take for granted again is the ability of a baby to hold
his/her own bottle/cup and feed themselves. Its amazing how difficult it is to
go anywhere b/c you have to totally stop to give them a bottle....no tossing
one in the backseat while you are on a drive.....I have become very envious of
moms who have this luxery!!!!!

But hes doing quite well....is walking kinnda..up on all the furnature and
trying to escape form his crib....hes had several falls, our most recent
giving him a huge goose egg on his lovely forhead...which mind you was squeshy
(yes, like a soft spot) and had me paronid all day yesterday.....didn't bother
him a bit, minus me poking at it all the time!!!!!

Hes keeping me very busy, as I am a lone parent until Sept. 11, as Joe is away
visiting a few different hospitals.....And I am exhausted!!!!!

Best of luck to those w/ upcoming surgeries that I have missed...our next one
is Sept 12....6 days shy of Jordans 1st b-day.....I hope our recovery goes as
well as everyones has here recently!!!!

Have a good one......

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Mon, 3 Aug 1998 12:49:14 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Patricia Smith <Patbrat718@AOL.COM>
Subject:      Jasmyn surgery cancelled.
Comments: To: RSmith1710@aol.com, Sassy4by@aol.com, Dixietex1@aol.com,
          Ahaynes120@aol.com, Mobilecac@aol.com, Zoowtchr@aol.com
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

This flu bug really got Jazz.  Here we are Monday morning, still dealing with
tempature's over 104 and not able to keep anything down.  We are looking at a
re-schedule date toward's the end of September or October.  I'm not sure
whether to take a deep breath and relax, or just cry.....maybe I'll do both.
At any rate, thanks all for your support, it really helped.

Patti
=========================================================================
Date:         Mon, 3 Aug 1998 12:07:24 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Lake Shelbyville Pictures
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey Gang!

Thought I'd try out my new scanner. These two pictures are of Taylor
Tingley, Nick Amerman, Seth Jefferson, Jacob Bailey, & Carroline Tingley.
They are from our weekend at Lake Shelbyville.

Laurie Bailey
jkb@elpaso.net
=========================================================================
Date:         Mon, 3 Aug 1998 12:08:59 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Sorry
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BDBED7.7F0015C0"
Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BDBED7.7F0015C0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Sorry guys, guess I need to attach the picture for you to see it.

Laurie Bailey
=========================================================================
Date:         Mon, 3 Aug 1998 13:13:07 -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:         Rich Hartley <rhartley@DZIS.COM>
Subject:      Andrew Hartley (3mo) is recovering.
Mime-Version: 1.0
Content-type: text/plain; charset=us-ascii

Hi! Gang,
Andrew had his Cranial Vault remodeling (Posterior release)
done last Monday 7/27. He was at CHOP in Philly for 5 days.
We noticed that he has a huge soft spot on top of his head.
The zig-zag scar is still healing and tough to look at. Do any
of the other infants constantly look "up". We only give him
Baby Tylenol. Anything else we can try.? How long before
the scar really heals.? We put Polysporin on the wound.
 We are having trouble getting a smile.! from him.

Thinking of all the other infants and kids. (Nicole / Sarah Muggli
etc..) Thank you to all for your advice and helpful hints on what
to expect.
Your friends
Rich & Karen Hartley (PA)
=========================================================================
Date:         Mon, 3 Aug 1998 10:20:34 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Canadian Toronto Moose
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Ann.  Thanks so much for your post about these ambassadors for our
country.  Interesting note about  Ken Mulgrew and your Peter Mulgrew.   I
myself have never seen them play; however, ice hockey is a big favourite in
these parts.  We have a professional team here in Calgary of course,
although they've been in the slumps for a while now.  Anyway, it is a fast
game and I too have trouble watchign the puck.  I've always said I see an
entirely different game fromanyone else because I have trouble finding the
puck   (poor eyesight I guess)

Pretty neat that Ken came to Amy's school and talked to the kids.  I bet
she's pleased to have his medal.  Nice memento for her.

Thanks for posting this note.  Made me as a Canadian puff up a bit.  We ARE
good folk.  Thank you for reminding us.
 

Nicely done, Ann.
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:         Mon, 3 Aug 1998 10:33:53 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Sarah LeCara
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Sarah's family (Nana and mom and dad)

THanks for letting us know about her surgery on the 5th.  We'll send our
positive thoughts Dallas-way on Wednesday.  It is such a big surgery.  I
didn't realize that the mid-face could be done at the same time as cranial
vault.    We'll be thinking of youin that waiting room too.  Don't forget to
take something to pass the time ... a crossword or Sarah's pictures to
organize into her album.

Take good care and please let us know when you are all home again.

Best to you,
Pat and EvaJessie 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:         Mon, 3 Aug 1998 14:24:33 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Resa and Mark Pace <Copperhd87@AOL.COM>
Subject:      Re: Andrew Hartley pain medication.
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Rich and Karen,
     After Mitchell's cranial surgery, we were sent home with a bottle of
Demerol.  Of course, he was 16 months old.  A three month old might not be
able to tolerate it.
     We were specifically told NOT to use motrin.  Apparently sometime in the
past it had interfered with the healing process of a patient.
     Glad you're home!

Resa
=========================================================================
Date:         Mon, 3 Aug 1998 13:12:02 -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:         Thomas Troudt <ttroudt@SPRYNET.COM>
Subject:      Re: Andrew Hartley (3mo) is recovering.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi, glad to hear that andrew is doing well.  One note of interest, Derek as
a newborn and infant used to look up all the time.  I used to think it was
the lights or something that he saw, but it disappeared in time and now he
doesn't do that at all.  Just my one input.  Keep us updated.
    Diana Troudt -in Greeley Co.
=========================================================================
Date:         Mon, 3 Aug 1998 13:48:58 -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:      winter virus
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Although it is summer here, we have  been battling something with Jacob
(2yrs) since March.  He had pneumonia in March and again in July. He is
starting with thick secretions again now even though he is on an antibiotic
and has been for a month.  He also had problems a year ago April with what
they thought could have been RSV but tests showed it wasn't.  I guess
because he still has the cleft palate he is suseptable to everything.  I
wish we could keep him healthy enough to get some surgeries done!
Colleen and gang
=========================================================================
Date:         Mon, 3 Aug 1998 17:23:12 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:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: pain medication.
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

After Jordans cranial surgery he was on Tylenol for a few days then moved to
Motrin...funny how different doctors use different meds. I know for his hand
surgeries we always get a script for Tylenol w/ Codene, but so far regular
tylenol and motrin is all we have needed......minus a bit of the stronger
stuff at 4am to get him back on a normal sleep cycle

Glad to hear Andrew is recovering nicely

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Mon, 3 Aug 1998 17:32:11 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:         Christina Mathis <Nodrmat26@AOL.COM>
Subject:      Re: Winter Virus/Pictures
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Carol~

How old is Ashleigh?  Zoey's Mom here (she's 18 months now), but she was
hospitalized every month with the exception of May last year due to
respiratory infections.  She does have a trach though, that's what everyone
attributed it to.  I took her out of daycare and she's in the hospital 99%
less now.  She never caught RSV, but a friend at daycare did (also with a
trach) and we held our breath for about a week.  She's had pnemonia a few
times, but mostly her illness was an unexplained "respiratory distress".
She's also put on some weight, so probably fighting bugs a little bit better
now.

Take Care,
Christina
San Antonio
=========================================================================
Date:         Tue, 4 Aug 1998 09:22:18 +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>
From:         Chris Wood <cepuvic@PEGASUS.COM.AU>
Subject:      (Fwd) FW: APERT: error report from PEGASUS.COM.AU
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

>
> Hi Folks,
>
> My name is Chris Wood, I live in Australia with my wife and kids. My
> 2nd child Emma was born in October 93 with Apert Syndrome.
>
> Reading the mail from the listserver reminds me of all the highs and
> lows my wife and I have gone through.  Only yesterday I arrived at
> the Childrens Hospital in Melbourne (Emma was already there as the
> hospital have been trialing a BIPAP machine for her sleep apnea) a
> MRI scan had been scheduled for 11 am.
>
>  At 11.30 am the anaesthetist arrived at Emma bedside, asked some
> questions, quickly looked through her file and said they were running
> a little behind schedule, then he left.
>
> At 12 midday, I was told the MRI was resheduled for 3pm! So I took a
> walk, got some lunch and rang my wife to give her a progress report.
>
> At 4pm, I was informed by the head of the intensive care unit that
> because the neurologist had requested a scan of her neck as well as
> the head the procedure would take much longer and therefore could
> not be done that day!
>
> So I empathise with Diana.
>
> Cheers
> Chris
>
>
> > Date:          Thu, 30 Jul 1998 18:05:44 -0700
> > Reply-to:      Information exchange and Internet safe haven for
> Apert Syndrome
> >                and other craniofacial anomalies
> <APERT@LISTSERV.AOL.COM>
> > From:          Thomas Troudt <ttroudt@SPRYNET.COM>
> > Subject:       Derek's surgery cancelled
> > To:            APERT@LISTSERV.AOL.COM
>
> > Wouldn't you know it??  The night before Derek's Craniofacial
> reconstruction
> > surgery he spikes a temperature of 102.  Took him down to the
> hospital in
> > Denver anyways and they said it was a no go.  We don't have it
> rescheduled
> > yet but will let everyone know when it is.  I hope it is soon.  It
> is hard
> > to psych yourself up for it and then to have it postponed is a
> killer. Talk
> > to you all again soon.
> >     Diana Troudt  in Greeley Colorado
> >
> >
=========================================================================
Date:         Mon, 3 Aug 1998 21:14:06 -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: Andrew Hartley (3mo) is recovering.
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Carmen Rae got tylenol with codeine (sp?) and the doctor said we could try
Motrin.  However, she really didn't need either.  (Thank goodness, as she
gags and throws up if we try to give her meds!!!!!!)  Carmen's incision was
pretty much healed in 3 - 4 weeks.  Although, she still has a spot on top
that is irritated from the stitches.  Glad to hear you are home; we will
continue to think of Andrew and pray for a speedy recovery.

Robin Hill

----------
> From: Rich Hartley <rhartley@DZIS.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Andrew Hartley (3mo) is recovering.
> Date: Monday, August 03, 1998 1:13 PM
>
> Hi! Gang,
> Andrew had his Cranial Vault remodeling (Posterior release)
> done last Monday 7/27. He was at CHOP in Philly for 5 days.
> We noticed that he has a huge soft spot on top of his head.
> The zig-zag scar is still healing and tough to look at. Do any
> of the other infants constantly look "up". We only give him
> Baby Tylenol. Anything else we can try.? How long before
> the scar really heals.? We put Polysporin on the wound.
>  We are having trouble getting a smile.! from him.
>
> Thinking of all the other infants and kids. (Nicole / Sarah Muggli
> etc..) Thank you to all for your advice and helpful hints on what
> to expect.
> Your friends
> Rich & Karen Hartley (PA)
=========================================================================
Date:         Mon, 3 Aug 1998 20:37:09 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Judy Amerman <jamerman@UTI.COM>
Subject:      One more for the lake
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BDBF1E.7C7F8D20"
Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BDBF1E.7C7F8D20
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hi,

Here is one more to add to the lake collection. (If I do this right)

Judy
=========================================================================
Date:         Tue, 4 Aug 1998 16:19:43 +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:         Carol or Jason <carolh@HOTKEY.NET.AU>
Subject:      Re: picture/birthday list
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Does anyone have an updated list for the picture exchange and also the
birthday list on word instead of works so I can update all my records here?
Would be much appreciated.
Thanks
Carol
=========================================================================
Date:         Tue, 4 Aug 1998 19:22:02 -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:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Andrew Hartley
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello everyone,
We are glad to hear that Andrew is doing well.  We have been sort of
behind in responding to the email since Nicole's cranial remodeling
(7/16) which she is recovering very well.  She is acting like nothing
ever happened.

Rich & Karen, you mentioned that Andrew looks up a lot.  With Nicole she
always seem to have her head tilted back as if she was looking through
bifocals.  Nicole's eye doctor said that this was normal in children
with Aperts because they usually have a "V" vision.  Their eyes widen as
they look up and come together as they look down.  Therefore she has
learned to tilt her head in order to have single vision.

Also, her eye doctor recommended eye muscle surgery prior to age two and
this will help correct this problem.  I don't know if this is what you
are referring to.  This is just our experience.

Jack Miller
=========================================================================
Date:         Tue, 4 Aug 1998 21:44:44 -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:         lisa mcgahan <wmcgahan@IX.NETCOM.COM>
Subject:      Re: Andrew Hartley (3mo) is recovering.
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Morgan (7 mos.) always looked up at the lights as well. She does it  a
little less now than when she was just born. I am glad to hear she will
grow out of it. I am curious why Andrew had his posterior release done so
early? Did he have pressure on the brain? Morgan had hers done at 6 months
- she had no pressure. We just did not want to do a total vault at once. .
We had gone to CHOP to see Dr. Whittaker for a third opinion on Morgan but
decided to have Dr. McCarthy and his team at NYU do the surgery. Whittaker
had told us to wait until Morgan was at least six months or 15 pounds. It
continues to fascinate me on how different the doctors advice can be. I
hope Andrew is recovering well. I thought the posterior release made a big
difference in Morgan developmentally.  Our thoughts are with you.  Lisa

----------
> From: Rich Hartley <rhartley@DZIS.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Andrew Hartley (3mo) is recovering.
> Date: Monday, August 03, 1998 10:13 AM
>
> Hi! Gang,
> Andrew had his Cranial Vault remodeling (Posterior release)
> done last Monday 7/27. He was at CHOP in Philly for 5 days.
> We noticed that he has a huge soft spot on top of his head.
> The zig-zag scar is still healing and tough to look at. Do any
> of the other infants constantly look "up". We only give him
> Baby Tylenol. Anything else we can try.? How long before
> the scar really heals.? We put Polysporin on the wound.
>  We are having trouble getting a smile.! from him.
>
> Thinking of all the other infants and kids. (Nicole / Sarah Muggli
> etc..) Thank you to all for your advice and helpful hints on what
> to expect.
> Your friends
> Rich & Karen Hartley (PA)
=========================================================================
Date:         Wed, 5 Aug 1998 18:12:25 +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:         Carol or Jason <carolh@HOTKEY.NET.AU>
Subject:      Re: (Fwd) FW: APERT: error report from PEGASUS.COM.AU
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi There

Its me again Carol,  just had a thought are you from Blackburn???

Carol
-----Original Message-----
From: Chris Wood <cepuvic@PEGASUS.COM.AU>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, 4 August 1998 9:43
Subject: (Fwd) FW: APERT: error report from PEGASUS.COM.AU
 

>
> Hi Folks,
>
> My name is Chris Wood, I live in Australia with my wife and kids. My
> 2nd child Emma was born in October 93 with Apert Syndrome.
>
> Reading the mail from the listserver reminds me of all the highs and
> lows my wife and I have gone through.  Only yesterday I arrived at
> the Childrens Hospital in Melbourne (Emma was already there as the
> hospital have been trialing a BIPAP machine for her sleep apnea) a
> MRI scan had been scheduled for 11 am.
>
>  At 11.30 am the anaesthetist arrived at Emma bedside, asked some
> questions, quickly looked through her file and said they were running
> a little behind schedule, then he left.
>
> At 12 midday, I was told the MRI was resheduled for 3pm! So I took a
> walk, got some lunch and rang my wife to give her a progress report.
>
> At 4pm, I was informed by the head of the intensive care unit that
> because the neurologist had requested a scan of her neck as well as
> the head the procedure would take much longer and therefore could
> not be done that day!
>
> So I empathise with Diana.
>
> Cheers
> Chris
>
>
> > Date:          Thu, 30 Jul 1998 18:05:44 -0700
> > Reply-to:      Information exchange and Internet safe haven for
> Apert Syndrome
> >                and other craniofacial anomalies
> <APERT@LISTSERV.AOL.COM>
> > From:          Thomas Troudt <ttroudt@SPRYNET.COM>
> > Subject:       Derek's surgery cancelled
> > To:            APERT@LISTSERV.AOL.COM
>
> > Wouldn't you know it??  The night before Derek's Craniofacial
> reconstruction
> > surgery he spikes a temperature of 102.  Took him down to the
> hospital in
> > Denver anyways and they said it was a no go.  We don't have it
> rescheduled
> > yet but will let everyone know when it is.  I hope it is soon.  It
> is hard
> > to psych yourself up for it and then to have it postponed is a
> killer. Talk
> > to you all again soon.
> >     Diana Troudt  in Greeley Colorado
> >
> >
=========================================================================
Date:         Wed, 5 Aug 1998 18:23:08 +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:         Carol or Jason <carolh@HOTKEY.NET.AU>
Subject:      Re: Andrew Hartley (3mo) is recovering.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi Rich & Karen

Our daughter Ashleigh who is 3 yrs always has looked up and we were worried
about it affecting the muscles in the back of her neck but were told that
this is the only way she can focus properly with both eyes until they do
some sort of correction to the muscles which should be done in the near
future.
-----Original Message-----
From: Rich Hartley <rhartley@DZIS.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, 4 August 1998 3:16
Subject: Andrew Hartley (3mo) is recovering.
 

>Hi! Gang,
>Andrew had his Cranial Vault remodeling (Posterior release)
>done last Monday 7/27. He was at CHOP in Philly for 5 days.
>We noticed that he has a huge soft spot on top of his head.
>The zig-zag scar is still healing and tough to look at. Do any
>of the other infants constantly look "up". We only give him
>Baby Tylenol. Anything else we can try.? How long before
>the scar really heals.? We put Polysporin on the wound.
> We are having trouble getting a smile.! from him.
>
>Thinking of all the other infants and kids. (Nicole / Sarah Muggli
>etc..) Thank you to all for your advice and helpful hints on what
>to expect.
>Your friends
>Rich & Karen Hartley (PA)
=========================================================================
Date:         Wed, 5 Aug 1998 10:08:04 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:         Dawn and John Jennerjohn <DnJJenner@AOL.COM>
Subject:      Re: teeth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hi All~
well just a little update about Courtney. A week or so ago we went for our
yearly check up and again all is fine as far as the cranioal facial goes. We
did see the dentist and Courtney has 2 loose teeth! I couldn't believe it! She
is 5 though, but still..... He said it would still take a few months for them
to come out. So she might loose them around school time.
We were told also she does not need her Mid face advance till she is about 7.

Oh Don I did want to ask.....  How can we or do we update the kids' page?  I
would like to update Courtney's because the letter was wrote so long ago.

Oh I was wanted to share one more thing...  the other night we had some
friends over... the man friend was sitting in the living room, Courtney was
talking to him, the next thing I see.. She is showing him her friends that
look just like her! All I could do is smile... she was just talking away tell
him everything  it was so cute!

Take care all
always Dawn
=========================================================================
Date:         Wed, 5 Aug 1998 10:08:03 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:         Dawn and John Jennerjohn <DnJJenner@AOL.COM>
Subject:      Re: Andrew Hartley (3mo) is recovering.
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 8/3/98 10:16:02 AM Pacific Daylight Time, rhartley@DZIS.COM
writes:

<< We noticed that he has a huge soft spot on top of his head. >>
Courtney had a huge one before her surgery so I didn't notice anything
afterwards. But that is why we were able to wait so long on her surgery.

Do any of the other infants constantly look "up".
hahaha  Courtney did...  its is because she sees something there now... ie. a
forehead she never had before...  hahaha  she grew out of it, but it was cute
when she first started it, the look on her face was Wow what's that!?  hahahaa

As far as her scare, which is zig zag, it held in a week or so...  I just kept
the greasy type med. they gave me, it was awful on her fine hair but we just
put hats on when we went out.

I know its a little late, but with summer and 3 kids  I have been a little
busy  =)
Take care
always  Dawn
=========================================================================
Date:         Wed, 5 Aug 1998 12:59:55 -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: Brooke is home!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Brooke came home yesterday (Tues.8-4-98).  She is infection free and off of
antibiotics after 10 weeks.  She is doing great ( I say this with caution). God
willing  she will stay healthy  and happy.  She seems glad to be home enyoying her
big sister and all of her toys.  Mom and Dad are pretty happy also .
                                                    Stacy Bell
=========================================================================
Date:         Wed, 5 Aug 1998 13:12:10 -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: Teeter tonsils
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Glad to her Teeter is doing well.

                                             Stacy
=========================================================================
Date:         Wed, 5 Aug 1998 13:27:57 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Steve & Stacy <sshb@EROLS.COM>
Subject:      Re: When does it end?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Lynn, What you are going through is perfectly normal.  Brooke is 19 months and I
still grieve sometimes.  Go by your instincts.  If you feel that Andrew is doing
well and is where he should be great but I would ask the therapist and his doctor
what they think first.
                                                Stacy
=========================================================================
Date:         Wed, 5 Aug 1998 13:36:13 -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

You are missing Brooke's picture. I wanted to send a recent picture  and
beleive it or not and my camera broke and I lost the whole roll.  Then she got
sick the end of May and didn't get home until yesterday.  Well, my camera has
since been repaired and just as soon as I can I plan on sending some recent
pictures.
                                                    Stacy

foster wrote:

> According to the picture exchange list we are missing twenty-five pictures.
> I am a littl  disappointed and am wondering if this is the case for anyone
> else? I would really like Billy's book to be of everyone.
> Karen(PA)
=========================================================================
Date:         Wed, 5 Aug 1998 10:53:41 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Amanda / Cathy Curtis <cam@CNW.COM>
Subject:      A little confused
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

ATTN: Don Sears
      I have forgotten how to cancel my membership here on the listserve.
Could you please tell me again how to do it? Thank you
Amanda
-----Original Message-----
From: Dawn and John Jennerjohn <DnJJenner@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, August 05, 1998 7:10 AM
Subject: Re: Andrew Hartley (3mo) is recovering.
 

>In a message dated 8/3/98 10:16:02 AM Pacific Daylight Time,
rhartley@DZIS.COM
>writes:
>
><< We noticed that he has a huge soft spot on top of his head. >>
>Courtney had a huge one before her surgery so I didn't notice anything
>afterwards. But that is why we were able to wait so long on her surgery.
>
>Do any of the other infants constantly look "up".
>hahaha  Courtney did...  its is because she sees something there now... ie.
a
>forehead she never had before...  hahaha  she grew out of it, but it was
cute
>when she first started it, the look on her face was Wow what's that!?
hahahaa
>
>As far as her scare, which is zig zag, it held in a week or so...  I just
kept
>the greasy type med. they gave me, it was awful on her fine hair but we
just
>put hats on when we went out.
>
>I know its a little late, but with summer and 3 kids  I have been a little
>busy  =)
>Take care
>always  Dawn
>
=========================================================================
Date:         Wed, 5 Aug 1998 16:36:19 +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:         Judy Gibson <jgibson2@EROLS.COM>
Subject:      Re: Brooke is home!
In-Reply-To:  <35C88F8B.D8038023@erols.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Stacy,
    I'm so glad to hear that Brooke is doing so much better!  The
crew at St. Agnes will be glad to get the good news too.

Judy
=========================================================================
Date:         Wed, 5 Aug 1998 14:17:58 -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:         Penny Halverson <phalvers@U.WASHINGTON.EDU>
Subject:      FW: Smiles!!!! :-) (fwd)
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>, Cleft-Talk <cleft-talk@pa.mother.com>
MIME-Version: 1.0
Content-Type: MULTIPART/MIXED; BOUNDARY="0-1710041892-902351878=:15883"

  This message is in MIME format.  The first part should be readable text,
  while the remaining parts are likely unreadable without MIME-aware tools.
  Send mail to mime@docserver.cac.washington.edu for more info.

--0-1710041892-902351878=:15883
Content-Type: TEXT/PLAIN; CHARSET=us-ascii
Content-ID: <Pine.A41.3.96a.980803223256.49278C@dante31.u.washington.edu>

Hi everyone!

Just to drop a quick note to share with you.  Here it is and
sending alots of smiles which was forwarded to me from one of
my friends.

Sorry I haven't posted for awhile because I am soooo busy these
days.   I haven't forgot you all and I still read all of the
CT's digests.   Take care!  Enjoy!  Hugs,   Penny  :-)

---------------Forwarded-Message----------------------------------

Poem:   Smiles!!!!!

>  Smiling is infectious,       : )          : )             : )
>  you catch it like the flu,        : )            : )           : )
>  : )          : )             : )          : )             : )
>  When someone smiled at         : )          : )             : )
>  me today, I started smiling too.        : )          : )
>  : )          : )         : )        : )          : )             : )
>
>  I passed around           : )          : )             : )
>  the corner, and someone saw my grin -       : )          : )
>  : )          : )             : )             : )          : )
>  When he smiled I     : )          : )             : )          : )
>  realized, I'd passed it on to him .        : )          : )
>
>        : )          : )             : )             : )          : )
>  I thought about           : )          : )             : )
>  that smile, then I realized its worth,           : )          : )
>
>  : )          : )             : )          : )             : )
>  A single smile, just like           : )          : )             : )
>  mine, could travel round the earth.   : )             : )
>          : )          : )             : )        : )             : )
>  So, if you feel a smile      : )          : )             : )
>  begin, don't leave it undetected -             : )          : )
>
>  : )          : )             : )          : )             : )
>  Let's start an epidemic        : )          : )             : )
>  quick and get the world infected !   : )             : )
>         : )          : )             : )         : )             : )
>  : )          : )             : )          : )             : )

--0-1710041892-902351878=:15883--
=========================================================================
Date:         Wed, 5 Aug 1998 17:43:01 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Fw: GOOD LUCK!!!
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit

I loved this poem, so I decided to send it to the listserver.  Ignore all
the bologna after the poem, though.  You know, it is one of those
rediculous chain things.  Anyway, I hope you all enjoy the poem, but
remember I am not sending it for benefits of the chain.  (Although, I won't
complain or give it back if I win a large sum of dough!!!!!!)

Robin Hill

----------
> From: Amy Grubbs <grubbsa@cambridg.oea.cambridge.oh.us>
> To: Cambridge Clerk of Council <clerkofcouncil@cambridgeoh.org>;
DKiss1000@aol.com; kgrubbs@cambridgeoh.com
> Subject: GOOD LUCK!!!
> Date: Tuesday, August 04, 1998 4:07 PM
>
>
>
>
> HEAVEN'S GROCERY STORE
>
>
> I was walking down life's highway a long time ago.
> One day I saw a sign that read, "HEAVEN'S GROCERY STORE".
> As I got a little closer, the door came open wide,
> And when I came to myself I was standing inside.
>
> I saw a host of ANGELS. They were standing everywhere.
> One handed me a basket and said, "My Child, shop with care".
> Everything a human needed was in that grocery store.
> And all you couldn't carry, you could come back the next day for
> more.
>
> First, I got some PATIENCE: LOVE was in the same row.
> Further down was UNDERSTANDING: you need that everywhere you go.
> I got a box or two of WISDOM, a bag or two of FAITH.
> I just couldn't miss the HOLY GHOST, for it was all over the place.
> I stopped to get some STRENGTH, And COURAGE to help me run this race.
>
> By then my basket was getting full, But I remembered I needed some
> GRACE.
>
> I didn't forget SALVATION, for SALVATION was free,
> So I tried to get enough of that to save both you and me.
> Then I started up to the counter to pay my grocery bill,
> For I thought I had everything to do the MASTER'S will.
>
> As I went up the aisle, I saw PRAYER:
> And I just had to put that in,
> For I knew when I stepped outside, I would run into sin.
> PEACE  AND JOY were plentiful; they were last on the shelf.
> SONG and PRAISE were hanging near, so I just helped myself.
>
> Then I said to the angel, "Now, how much do I owe?"
> He smiled and said, "Just take them everywhere you go."
> Again, I smiled and said, "How much do I really owe?"
> He smiled again and said, "MY CHILD, GOD PAID YOUR BILL A LONG, LONG
> TIME AGO."
>
>
>
>
> This notice has been sent to you for good luck.  The original is from
> the Netherlands.  It has been around the world 9 times. This luck has
> now been brought to you.  You will receive good luck within six days
> of receiving this letter providing you, in turn send it back out.
>
> This is not a joke.  You will receive it in the mail.  Send copies of
> this letter to people you think need good luck.  DO NOT SEND MONEY
> for it has no price on it.  Do not keep this letter.  It must leave
> your hands 90 hours after you receive it.
>
> An RAF officer received $70,000.00 after he sent his letter out.  Joe
> Elliot received $450,000,000 and lost it because he broke the chain.
> While in the Philippines, General Welch lost his life 6 days after he
> received the letter; he failed to circulate the quote. However,
> before he died,he received $750,000,000.
>
> Please send twenty copies of this letter and see what happens on the
> 6th day. This chain came from Venezuela and was written by Saul
> Anthony Lavoid, a missionary from South America. I myself, forward
> this to you, but it is sent anonymously to you.
>
> Since this chain makes a tour of the world, you must make twenty
> identical copies and send them to friends, relatives, andassociates.
>
> After a few days you will get a surprise.. this is true even if
> youare not superstitious.
>
> Take note of the following:Constatin Ladd received the chain in
> 1953,he asked his secretary to make 20 copies and send them out.
> After a few days he won the lottery for $20,000.00 in his country.
>
> Carlo Baditt, an office employee, received the chain and forgot about
> it. A few days later he lost his job.  He found the chain letter and
> sent it out to twenty people the next day. Five days later he got a
> better job.
>
> For no reason should this chain be broken.
>
>
>
>
>
>
=========================================================================
Date:         Wed, 5 Aug 1998 21:45:29 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Andrew Hartley pain medication.
Mime-Version: 1.0
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Rich & Karen:

Glad to hear Andrew is home and doing well.  The scar will gradually get
better and be less visible.  As for looking up all the time, Emily (1 year old
now) she was always looking up also.  I used to think it was the light from
the window or the ceiling fan, but her eye doctor said it has to do with the
fact that her brain is telling her eyes to do that because she can focus
better that way.  She actually said that is a good sign.

As far as smiling, Emily didn't smile for a long time.  I remember seeing a 3
month old in Macys and the baby was smiling and she wasn't yet.  It does come.
As I am still learning, everything in her own time.

Best wishes,

Janine Krebs
=========================================================================
Date:         Wed, 5 Aug 1998 22:02:29 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Zoey's surgery/Brooke
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Best wishes to Zoey on a speedy recovery from her surgery

Glad to hear that Brooke is home.  Sounds like it has been a long haul.

Wishing everyone a happy and healthy evening.

Janine
=========================================================================
Date:         Wed, 5 Aug 1998 11:39:27 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Brooke is home!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Stacy and Steve.  Great that Brooke is home.  She's had one tough time of
it.  So have you.  I bet you'll all really recover now she's home.  Thanks
for letting us know.

Pat and Evajessie

email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood.  Tom Robbins (Still Life With
Woodpecker)
=========================================================================
Date:         Thu, 6 Aug 1998 09:20:45 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Re: URL referral
Comments: To: "Kevin S. Hopkins, M.D." <khopkins@onramp.net>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit

Welcome - we are honored to have you join the listserv!  Your website is
very well done and provides great information, and I'll feature it in
our links section.  If the volume of individual emails is a problem, let
me know and I'll change your subscription options so that you get the
mail in digest form (one email per day).

Thanks for your letter and your comments, and we look forward to your
input.

Don
 
 

> -----Original Message-----
> From: Kevin S. Hopkins, M.D. [SMTP:khopkins@onramp.net]
> Sent: Wednesday, August 05, 1998 8:56 PM
> To:   catndon@apert.org
> Subject:      URL referral
>
> You are doing a tremendous service for the families, children and
> public on your site.
>
> My name is Dr. Kevin S. Hopkins. I am a craniofacial plastic surgeon
> working with Drs. Kenneth Salyer, Eric Hubli and David Genecov at the
> International Craniofacial Institute in Dallas, Texas.
>
> I just joined your list server today.  Could you please mention our
> web page at http://www.salyermd.com
>
> Thank you very much.  We look forward to participating with you and
> your organization.
>
> Sincerely,
>
> Kevin S. Hopkins, M.D.
> International Craniofacial Institute
> Suite C-717, 7777 Forest Lane
> Dallas, TX  75230
>
> Email khopkins@onramp.net
>
>
=========================================================================
Date:         Thu, 6 Aug 1998 15:43:29 +0200
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:         Tiaan Odendaal <TiaanO@BUSCONN.CO.ZA>
MIME-Version: 1.0
Content-Type: text/plain

Hi ALL

My name is Jessica Botha. I joined the server about three weeks ago with
the help of my friend , Tiaan.

I joined the server because I have a two year old boy that was born with
Apert syndrome.I was only 18 years old at the time.
My son's name is Clint. He has had several operations on his face and
especially his hands , and next week the doctors are going to start on
his feet as they are webbed as well as his hands.
Luckily he has'nt had any problems with his teeth  or eyes etc.
He is a very active little boy with lots of love in him.

Tiaan and me are setting up a website for Clinty and we will let you all
know when it is going up.We stay in Pretoria , South Africa.

I just want to thank you for  the listserver which has helped allot . It
was so great to see other children with the same symptoms as we have not
seen other children here in South Africa with Apert Syndrome.

Jessica
tiaano@busconn.co.za
=========================================================================
Date:         Thu, 6 Aug 1998 10:49:31 -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:         Rich Hartley <rhartley@DZIS.COM>
Subject:      Welcome to Jessica,Tiaan & Clint
Mime-Version: 1.0
Content-type: text/plain; charset=us-ascii

Hoe gaan did.? Ek is van Kaapstad af. My seen is
3 maand oud. My Afrikaans is baie swak. Ek bly in
Pennsylvania, VSA vir die laaste 10 Jaar. Julle is
nie aleen nie. Dar is omtrent 150 mense op die
Listserv aloor die werld.

Ok, Back to English. I am also South African, from
Cape Town. I have been here for the last 10 yrs.
Our little Andrew is 3 months old and just had his
first operation. (Cranial vault remodeling). I am sure
that everyone would love to see a picture of Clinty
If you feel comfortable you could post your address
in Pretoria and receive letters.  We would love to
hear more about Clinty.

Once again, welcome. You have friends here.

Regards,
Rich & Karen Hartley (PA, USA)
=========================================================================
Date:         Thu, 6 Aug 1998 11:50:39 -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:         Rich Hartley <rhartley@DZIS.COM>
Subject:      Welcome to Jessica,Tiaan & Clint
Mime-Version: 1.0
Content-type: text/plain; charset=us-ascii

Hoe gaan did.? Ek is van Kaapstad af. My seen is
3 maand oud. My Afrikaans is baie swak. Ek bly in
Pennsylvania, VSA vir die laaste 10 Jaar. Julle is
nie aleen nie. Dar is omtrent 150 mense op die
Listserv aloor die werld.
Ok, Back to English. I am also South African, from
Cape Town. I have been here for the last 10 yrs.
Our little Andrew is 3 months old and just had his
first operation. (Cranial vault remodeling). I am sure
that everyone would love to see a picture of Clinty
If you feel comfortable you could post your address
in Pretoria and receive letters.  We would love to
hear more about Clinty.
Once again, welcome. You have friends here.
Regards,
Rich & Karen Hartley (PA, USA)
=========================================================================
Date:         Thu, 6 Aug 1998 12:40:41 -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:         "Kevin S. Hopkins, M.D." <khopkins@ONRAMP.NET>
Subject:      Re: URL referral
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Dear Mr. Sears,

Actually, the idea of receiving a digest email of the day's events is a
wonderful idea.
Could I please receive that?

Thank you,

Sincerely,

Kevin S. Hopkins, M.D
khopkins@onramp.net
=========================================================================
Date:         Thu, 6 Aug 1998 14:42:41 -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:         Penny Halverson <phalvers@U.WASHINGTON.EDU>
Subject:      FW: A Little Girl With Cancer (fwd)
Comments: To: Cleft-Talk <cleft-talk@pa.mother.com>,
          Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi all

This was forwarded to me from Monica who know someone who know
a little girl that have serious cancer.   Thanks.  Hugs,   Penny

---------Dennnis Shields Wrote----Date: Wed, 15 Jul 1998 19:21:13 PDT
>Dear All,
>I just received this mail from a friend of mine in my College.
>Please respond to it. It will just mean employing a little bit of
>time and won't cost you a penny. All it needs is the heart for you to
>send this mail. PLEASE pass this mail on to everybody you know.  It is
>the request of a little girl who will soon leave this world as she has
>been a victim  of the terrible disease called CANCER. Thank you  for
>your effort, this isn't  a chain letter, but a choice for all of us to
>save a little girl that's  dying of a serious and fatal form of cancer.
>
>Please  send this to everyone you know...or don't  know.
>This little girl has  6  months left to live, and as her dying wish,
>she wanted to send a chain  letter telling everyone to live
>their life to fullest, since she never  will.  She'll never make it to
>prom, graduate from high school, or get  married and have a family of her
>own.
>
>By you sending this to as many  people as possible, you can give her
>and her family a little hope,  because with every name that this is sent
>to, The American Cancer  Society will donate 3 cents per name to her
>treatment and recovery plan.  One guy sent this to 500 people!!!!
>So, I know that we can send it to  at least 5 or 6.  Come on you
>guys and take 10-15 minutes scrolling this and forwarding it to EVERYONE.
>Just think it could be you one day. It's not even your money, just your
>time!    PLEASE PASS ON!!!
>
> Dr. Dennis Shields
> Professor
> Department of Developmental and Molecular Biology
> Albert Einstein College of Medicine of Yeshiva University
> 1300 Morris Park Avenue
> Bronx, New York 10461
> Phone 718-430-3306
> Fax 718-430-8567
>
> Philipians 4:13--For I can do all things through Christ who
> strengthens me.
>
>Don't forget there is nothing like a true friend and I count my
>blessings that you are exactly that!!!
>
>
=========================================================================
Date:         Thu, 6 Aug 1998 22:40:08 -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:         foster <foster@ICONTECH.COM>
Subject:      various
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Glad to hear that Zoey,Andrew and Brooke are home and recovering nicely. Our
prayers are with Jasmyn and Sarah. Hopefully they will be home soon and
doing well.

Welcome to Tiann,Jessica and Clint. Also welcome to Dr.Hopkins.

Hope I didn't miss anyone.

Things here are going ok and Billy will be having his surgery on Augt.13th.
The Urologist will do his surgery first which will take about an hour and
then the surgeon will do the two index fingers. He will stay in the hospital
for two nights and if everything is ok he will be home by Saturday.

It was interesting to read that Tiann,Jessica and Clint live in S.Africa and
that the Hartley's also lived in Africa. Not because we have ever lived
there but because Billy's Plastic Surgeon is also from South Africa. He is a
great guy and is wonderful with Billy and all of us.

Also wanted to say that we got a new picture in the mail today and it was
wonderful to see Joanne Lindamood's picture and read all about her. It was
almost six weeks since we had any pictures delivered and it really made my
day. I am hoping to see many more pictures in the near future.(hint)

Hope all is well with everyone else and I will write again as soon as
Billy's surgery is over.

Karen(PA)
=========================================================================
Date:         Fri, 7 Aug 1998 00:31:44 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         BO p 1912 <BOp1912@AOL.COM>
Subject:      Re: Fw: John Holter Story
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 98-07-31 11:12:49 EDT, you write:

<< UTI.COM>
 Subject:      Fw: John Holter Story >>
=========================================================================
Date:         Fri, 7 Aug 1998 01:44:44 -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:         Chan <jchan7@PACBELL.NET>
Subject:      Eyes
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

There's been some discussion about the eyes lately.  Just wanted to
share with you about the LASIK eye surgery I had last week.  Now I can
see without contacts or glasses.  The outpatient procedure was clean,
fast, and painless.  This is something new and has only been FDA
approved in the U.S. for about 3 years.  But the results are amazing!
Our insurance covered the cost.  It corrects nearsightedness,
farsightedness, and astigmatism.

Rose
La Mirada, CA
=========================================================================
Date:         Fri, 7 Aug 1998 09:45:12 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Re: A Little Girl With Cancer (fwd)
MIME-Version: 1.0
Content-Type: text/plain

Folks, in the future, please think about these type of chain letters
before you forward them on to all of your friends.  This one is a prime
example of a letter that was probably designed to pull at your
heartstrings and add to the worldwide waste of pointless email.  Think
about it - exactly how will these emails be counted and the totals
relayed to the Cancer Society?  And have you ever heard of the Cancer
Society making treatment contributions contingent on the efforts of
random strangers?

Trust me - these chain letters are designed to tie up your time.  If
there is a Dennis Shields, just think of the calls he will get from this
phone number being published.  Also notice that in the supposed quote
"Dennis" is misspelled - evidence that the "original" message is
probably a forgery.

The world is full of people who have nothing better to do than to design
things to waste time.  Please don't let them waste yours.

> -----Original Message-----
> From: Penny Halverson [SMTP:phalvers@U.WASHINGTON.EDU]
> Sent: Thursday, August 06, 1998 5:43 PM
> To:   APERT@LISTSERV.AOL.COM
> Subject:      FW: A Little Girl With Cancer (fwd)
>
> Hi all
>
> This was forwarded to me from Monica who know someone who know
> a little girl that have serious cancer.   Thanks.  Hugs,   Penny
>
> ---------Dennnis Shields Wrote----Date: Wed, 15 Jul 1998 19:21:13 PDT
> >Dear All,
> >I just received this mail from a friend of mine in my College.
> >Please respond to it. It will just mean employing a little bit of
> >time and won't cost you a penny. All it needs is the heart for you to
> >send this mail. PLEASE pass this mail on to everybody you know.  It
> is
> >the request of a little girl who will soon leave this world as she
> has
> >been a victim  of the terrible disease called CANCER. Thank you  for
> >your effort, this isn't  a chain letter, but a choice for all of us
> to
> >save a little girl that's  dying of a serious and fatal form of
> cancer.
> >
> >Please  send this to everyone you know...or don't  know.
> >This little girl has  6  months left to live, and as her dying wish,
> >she wanted to send a chain  letter telling everyone to live
> >their life to fullest, since she never  will.  She'll never make it
> to
> >prom, graduate from high school, or get  married and have a family of
> her
> >own.
> >
> >By you sending this to as many  people as possible, you can give her
> >and her family a little hope,  because with every name that this is
> sent
> >to, The American Cancer  Society will donate 3 cents per name to her
> >treatment and recovery plan.  One guy sent this to 500 people!!!!
> >So, I know that we can send it to  at least 5 or 6.  Come on you
> >guys and take 10-15 minutes scrolling this and forwarding it to
> EVERYONE.
> >Just think it could be you one day. It's not even your money, just
> your
> >time!    PLEASE PASS ON!!!
> >
> > Dr. Dennis Shields
> > Professor
> > Department of Developmental and Molecular Biology
> > Albert Einstein College of Medicine of Yeshiva University
> > 1300 Morris Park Avenue
> > Bronx, New York 10461
> > Phone 718-430-3306
> > Fax 718-430-8567
> >
> > Philipians 4:13--For I can do all things through Christ who
> > strengthens me.
> >
> >Don't forget there is nothing like a true friend and I count my
> >blessings that you are exactly that!!!
> >
> >
=========================================================================
Date:         Fri, 7 Aug 1998 12:23:52 -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:         "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject:      Re: A Little Girl With Cancer (fwd)
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"

Don,
        I have been leary of these kinds of letters and just happened to
call this one to check it out, and indeed, it is a fake.  This poor
Dennis is getting so many calls it states on his answering machine "if
you are calling about the e-mail, it is not true"........what a world.
=================================================================
Mark Wittenburg                                           Senior Network
Engineering Specialist
City of Tempe
http://www.tempe.gov/
602-350-8237
markwi@tempe.gov

> ----------
> From:         Don Sears[SMTP:dsears@SCRS.STATE.SC.US]
> Sent:         Friday, August 07, 1998 6:45 AM
> To:   APERT@LISTSERV.AOL.COM
> Subject:      Re: A Little Girl With Cancer (fwd)
>
> Folks, in the future, please think about these type of chain letters
> before you forward them on to all of your friends.  This one is a
> prime
> example of a letter that was probably designed to pull at your
> heartstrings and add to the worldwide waste of pointless email.  Think
> about it - exactly how will these emails be counted and the totals
> relayed to the Cancer Society?  And have you ever heard of the Cancer
> Society making treatment contributions contingent on the efforts of
> random strangers?
>
> Trust me - these chain letters are designed to tie up your time.  If
> there is a Dennis Shields, just think of the calls he will get from
> this
> phone number being published.  Also notice that in the supposed quote
> "Dennis" is misspelled - evidence that the "original" message is
> probably a forgery.
>
> The world is full of people who have nothing better to do than to
> design
> things to waste time.  Please don't let them waste yours.
>
> > -----Original Message-----
> > From: Penny Halverson [SMTP:phalvers@U.WASHINGTON.EDU]
> > Sent: Thursday, August 06, 1998 5:43 PM
> > To:   APERT@LISTSERV.AOL.COM
> > Subject:      FW: A Little Girl With Cancer (fwd)
> >
> > Hi all
> >
> > This was forwarded to me from Monica who know someone who know
> > a little girl that have serious cancer.   Thanks.  Hugs,   Penny
> >
> > ---------Dennnis Shields Wrote----Date: Wed, 15 Jul 1998 19:21:13
> PDT
> > >Dear All,
> > >I just received this mail from a friend of mine in my College.
> > >Please respond to it. It will just mean employing a little bit of
> > >time and won't cost you a penny. All it needs is the heart for you
> to
> > >send this mail. PLEASE pass this mail on to everybody you know.  It
> > is
> > >the request of a little girl who will soon leave this world as she
> > has
> > >been a victim  of the terrible disease called CANCER. Thank you
> for
> > >your effort, this isn't  a chain letter, but a choice for all of us
> > to
> > >save a little girl that's  dying of a serious and fatal form of
> > cancer.
> > >
> > >Please  send this to everyone you know...or don't  know.
> > >This little girl has  6  months left to live, and as her dying
> wish,
> > >she wanted to send a chain  letter telling everyone to live
> > >their life to fullest, since she never  will.  She'll never make it
> > to
> > >prom, graduate from high school, or get  married and have a family
> of
> > her
> > >own.
> > >
> > >By you sending this to as many  people as possible, you can give
> her
> > >and her family a little hope,  because with every name that this is
> > sent
> > >to, The American Cancer  Society will donate 3 cents per name to
> her
> > >treatment and recovery plan.  One guy sent this to 500 people!!!!
> > >So, I know that we can send it to  at least 5 or 6.  Come on you
> > >guys and take 10-15 minutes scrolling this and forwarding it to
> > EVERYONE.
> > >Just think it could be you one day. It's not even your money, just
> > your
> > >time!    PLEASE PASS ON!!!
> > >
> > > Dr. Dennis Shields
> > > Professor
> > > Department of Developmental and Molecular Biology
> > > Albert Einstein College of Medicine of Yeshiva University
> > > 1300 Morris Park Avenue
> > > Bronx, New York 10461
> > > Phone 718-430-3306
> > > Fax 718-430-8567
> > >
> > > Philipians 4:13--For I can do all things through Christ who
> > > strengthens me.
> > >
> > >Don't forget there is nothing like a true friend and I count my
> > >blessings that you are exactly that!!!
> > >
> > >
>
=========================================================================
Date:         Fri, 7 Aug 1998 22:49:32 -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:         Robin MacDonald <macdonal@GOLDEN.NET>
Subject:      chain letters
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

I don't beleive there has ever been a chain letter that has been on the
up and up. It is similar to a pyramid scheme where you send money to the
first person on the list..and then copy the letter to 10 people etc.
This will only work for the people who first start the letter..and in
Canada, these types of schemes are illegal.

Thanks to Don for the timely reminder about what is basically e-fraud.