>      My daughter  Mallory was tested for ADD but with no conclusive results.
> She has trouble with focusing also. The Dr. put her on Ritalin also with very
> bad side effects. So being the mother and nurse I took her off and things got
> better. She failed phonics every year but read on a 3 grade higher level. She
> has always had trouble with math and language. Two years ago we had a
> principal at our school who talked with us frequently and came up with the
> diagnosis of dyslexia called pen to paper. They learn and know it but can't
> write it down on paper. We study for tests and she can tell me all the answers
> but fails the written test. Last night I had another student teacher tell me
> the same thing. Now we are looking into this. If anyone knows anything about
> this please let me know atCoH1862@aol.com.

     There are a couple of organizations that deal with dyslexia. The
Orton-Gillingham foundation is the largest.  They have a web page,
but I don't have the URL (Computer crash last month and I haven't
looked it up again).  If you have WWW access, you can do a web search
on dyslexia -- you'll come up with more than you ever wanted to know.
     My middle son has dyslexia.  It's one of the reasons I
homeschool him.  Fortunately, it hasn't impacted his ability to do
math, so we've just dealt with the language end of it.  He reads at
grade level, although somewhat more slowly than many kids his age.
Your school system should have testing mechanisms in place, but
Mallory probably doesn't qualify as long as she is working at or
close to grade level.  Look in your local telephone book for
Orton-Gillingham.  If they have a local office, call them for
suggestions.

Judy

> Thanks,
>
> Diane
>
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Thu, 8 Oct 1998 00:19:10 +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: Ritalyn
In-Reply-To:  <199810071524_MC2-5BFA-5345@compuserve.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

> My husband and I are not wanting to use anyhting on Michelle unless that is
> the only hope, which brings me to find out all about this Ritalin stuff or
> any other medication.  She can be easily distracted in class but she is not
> disrupting or anyhting like that.

     Easily distracted is pretty normal for second grade.  If she's
keeping up in school, I'd talk to the teacher about other options --
like her seating position in the classroom. She may need to be
separated from a buddy for a while.  I'd also be inclined to visit
the classroom or have someone else observe.  Maybe SHE isn't the
problem.  Maybe one or more of the kids near her is disruptive.
(My oldest has ADHD, but often someone else was much more of a
problem in the classroom than he was)

 Judy
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Thu, 8 Oct 1998 21:32:31 +1300
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: Therapists?????
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>  The hand surgeon
>wants her to see a CERTIFIED HAND THERAPIST.

Wow, you guys DO have a wide choice don't you!  Amy just had her plain old ordinary therapist and the hand surgery didn't involve her in anything outside the normal visits!  Fortunately when she got to school she had a proactive teacher aide who got her involved in doing a variety of things to help her hand function.

Good luck with the therapy.  If you do go to the Certified Hand Therapist I would be interested to know what they do that's different from regular therapy.

Cheers
Ann
NZ
=========================================================================
Date:         Thu, 8 Oct 1998 21:32:34 +1300
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: Ritalyn
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Martha

The main task for the Teacher Aide working with our Amy is to keep her on task and focussed on her work - she works fine when someone is "on top of" her.  She has never been tested for ADD as this is the only behavioural area that she has difficulty with.  She is not disruptive and no teachers have complained about her behaviour in class.

Maybe this tendency is typical of children with Apert without it actually being ADD.

Also, there are probably many other non-Apert children who have the same difficulty and maybe they are looking for ADD because she has a syndrome.  Just a thought.

Regards
Ann
NZ
=========================================================================
Date:         Thu, 8 Oct 1998 07:11:26 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: Ritalyn
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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I have a friend of minw eho in a 3rd grade teacher and she always complains
that many teachers are quick to give kids labels. She was saying several years
ago before ADD was widley know, many of todays 'ADD behaviors" were just
ordinary kids who were more interested in exploring their imagination (which
in and of itself isn't a bad thing) than looking at books. Not that there are
not kids out there w/ this problem, her advice to parents who think their kids
have an attention problem, is to be 100% sure before medicating them.....which
I guess is where a physician evaluating them comes into it.

She is known to get on her soap box quite a bit in regardds to this, b/c so
many parents feel that if they give their kid some Ritalyn then they will make
all A's and no longer get conduct cards sent home....She says "NOT TRUE"...and
the kids she deals w/ are all "normal"......which again is quite a  relative
term

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Thu, 8 Oct 1998 12:43:48 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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: life's embarressing moments...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Talk about "Live at 11:00". I can really relate!!  If you have it on video
send it to the Funniest Home Videos TV show. Win a prize and help defray
medical expenses.....or use it to pay for a lifetime of swimming lessons!
Thanks for the grins!

Marianne
=========================================================================
Date:         Thu, 8 Oct 1998 13:58:54 -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: Ritalyn
MIME-Version: 1.0
Content-Type: text/plain; charset=Default
Content-Transfer-Encoding: 7bit

Ryan

Laurie Bailey here. My son Jacob is not on any medication. But, our local
news channel has been doing a series on Ritalin. If you are interested, go
to www.week.com and check out the links to ADD & Ritalin.

Laurie Bailey
jkb@elpaso.net

----------
> From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Ritalyn
> Date: Wednesday, October 07, 1998 2:24 PM
>
> Hi Carol:
>
> My husband and I are not wanting to use anyhting on Michelle unless that
is
> the only hope, which brings me to find out all about this Ritalin stuff
or
> any other medication.  She can be easily distracted in class but she is
not
> disrupting or anyhting like that. We think that with help at home from
Mom
> & Dad she can do just fine. She wears glasses already so I don't think is
> the vision and like I said she can read just fine She just needs to pay
> attention when the teacher or whoever is reading a book so she may be
able
> to answer questions about it.
> Thanks for al lthe info.
>
> Martha
=========================================================================
Date:         Thu, 8 Oct 1998 17:54:00 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:         BBarn60368@AOL.COM
Subject:      Re: Therapists?????
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Robin,

We had to take Shirley to a therapist after her finger releases and I can't
imagine the pain they put her through being worth what she was supposed to get
out of it.  First off they never had the slightest idea what they were
supposed to do with her and they usually acted like they didn't understand
what the Dr. wanted them to accomplish.

Secondly, Shirley always screamed the entire time they were messing with her.
(Let's try to envision how painful these newly cut apart digits must be.)
What they ended up doing was making "spacers" that we were supposed to push in
between her newly cut apart fingers each night before putting her to bed.  She
screamed horribly every time we did it.  And this is all before the scabs were
even fully formed.  Can you imagine??

By the way, it supposedly was to reduce scarring and her fingers have terrible
scars.  If I had it all to do over, I would not dream of doing it.

Alice in Orlando
=========================================================================
Date:         Fri, 9 Oct 1998 18:52:00 -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:         Alice Lynch <goddess@CAPITAL.NET>
Subject:      Re: Ritalyn
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hi!

My son, Colin, is very easily distracted.  He's been in one form or another
of special ed since 3 years old.  Last year his teacher and I were at the
end of our ropes and decided to have him tested.  He came up just barely
ADD.  I took him to our Ped. doctor, who is a wonderful fellow and we
talked for what seemed like an hour on do I put Colin on Ritalyn or not.  A
year later it's the best thing we could have done.  He's able to
concentrate in school, participates fully, anwers questions now and enjoys
doing his work in school and at home.  He's in the middle of triannual
testing and low and behold he's testing in the normal range pretty much
across the board.  He's 9 years old and still in fantasy land alot of the
time but it's on his time not the schools.  He said after about a week of
taking the meds that, "it helps alot" and I have no trouble giving it to
him and he's a kid who won't even take aspirin for a headache or fever.  No
bad side effects either.  I just thought you might like a positive
response.  If it's the right diagnosis it's a great drug.  Colin goes to
school with a good attitude now and enjoys learning.  It's been an amazing
year for Colin.

Good luck with your difficult decision.

Alice

----------
> From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Ritalyn
> Date: Wednesday, October 07, 1998 3:24 PM
>
> Hi Carol:
>
> My husband and I are not wanting to use anyhting on Michelle unless that
is
> the only hope, which brings me to find out all about this Ritalin stuff
or
> any other medication.  She can be easily distracted in class but she is
not
> disrupting or anyhting like that. We think that with help at home from
Mom
> & Dad she can do just fine. She wears glasses already so I don't think is
> the vision and like I said she can read just fine She just needs to pay
> attention when the teacher or whoever is reading a book so she may be
able
> to answer questions about it.
> Thanks for al lthe info.
>
> Martha
=========================================================================
Date:         Thu, 8 Oct 1998 21:14:38 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:         ETolson643@AOL.COM
Subject:      Re: Ritalin
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Being a special education teacher, I have seen many kids benefit from the use
of ritalin, especially after all other interventions have been tried.  Even
though ritalin is a stimulant, it works in kids with ADD because it stimulates
the "brakes" in the brain which control activity.  Paradoxically, my husband,
who is a spinal cord injury RN, uses ritalin as a stimulant to keep the
patients awake during the day.  I can understand the reservation about using a
medication, but when all else has failed, it might be worth the try.  I
currently have a student (14 years old) who takes ritalin during the school
year and does very well attending and concentrating.  Last summer he was in a
summer program I worked at and I had a chance to see him off of his meds.  I
couldn't believe it was the same boy.  His impulsivity and activity level were
hard to keep up with.  To me, he was a classic example of someone who truly
benefits from the use of ritalin.  Food for thought.....

Beth Tolson
=========================================================================
Date:         Thu, 8 Oct 1998 23:29:01 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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Therapists?????
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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In a message dated 10/7/1998 5:03:49 AM Pacific Daylight Time,
Jenngram@AOL.COM writes:

<< he surgeon felt the same way, his opinion was always that as a
 kid, he will manipulate and use his new digits, unlike adults who are
 resistant b/c of pain. Kids tend to wrok through it b/c they don't want to be
 slowed down >>
This is the same as our hand surgeon felt. Evan had an OT initially as they
did trans-disciplinary treatment so the OT was doing a lot of  PT. Our last OT
(the third to exit us to maternity leave...are we "carrying" some fertility
virus or something ??)  has major frustration trying to get our very 2 year
old Evan to focus on fine motor tasks. Our new OT is co-treating with the
speech therapist on oral-motor issues and they are a bang-up team. They have
even requested to come to his annual craniofacial team eval to learn more
about his palate, etc. I'm anticipating great things here!!

Marianne
=========================================================================
Date:         Sat, 10 Oct 1998 11:47:49 -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:         Christine Clark <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject:      Break out planned!
Comments: To: Ann Castro <acastro@sdcoe.k12.ca.us>,
          Ann Coombs-Kenney <anncoombs@juno.com>, Binks <rmpbailey@juno.com>,
          Brian Clark <B_Clark@Skidmore.edu>,
          CCA - Charlene Smith <DNKM90A@prodigy.com>, Colleen <C27457@aol.com>,
          Cranioserve <cranioserve@pa.mother.com>, DAD <leop@thegrid.net>,
          David Roche <"Dave Roche"@aol.com>, Denise & Mike <STSair2@aol.com>,
          Dufours <Readynow96@aol.com>,
          FACES - Lynne Mayfield <faces@mindspring.com>,
          Florence & Phil <LaRiviere@refuge.org>,
          Jean Still <jrstill@sonic.net>, Jim & Deb <CLARKIE8@aol.com>,
          Joanne Lindamood <chanan8@juno.com>,
          Karen & Peter <PeterK7470@aol.com>,
          Kathy Riley <105574.3156@compuserve.com>,
          Kelly Tierney <ktierney@montgomery.com>,
          Lee Ann <LNoyes5968@aol.com>, Majka Tolarova <mto@itsa.ucsf.edu>,
          Meredith <T_MEREDITH_ROSS@amat.com>, Mike & Tina <TMTIER@aol.com>,
          Nancy Watson-Agarwal <ng_watson@interx.com>, Paul <pfccfpvp@aol.com>,
          Pete & Korby <KCLARK2113@aol.com>, Sue <S27457@aol.com>,
          Tammy <TStark@pmrp.com>
MIME-Version: 1.0
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Hello to All,

My white counts jumped from 900 to 4,800 over night and then again
jumped overnight to a reading of 9,600 today!  My platelets are staying
stable and my mouth sores and rash are subsiding.  My doctors are saying
that I may be able to leave the hospital as early as tomorrow, Sunday
Oct. 11th.

The Blue Angels are performing this weekend in San Francisco and I have
had a great view of their practicing this week.  Jack and the girls and
my sister are coming for the show from my hospital room window and with
any luck I WILL BE GOING HOME WITH THEM TOMORROW!!

It looks like I am going to fulfull my goal of 2-3 weeks instead of 3-4
weeks.

Have a great weekend - I know I will!!

All my best,   Christine
=========================================================================
Date:         Sat, 10 Oct 1998 13:57:03 -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: Break out planned!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Great News Christine!!!!!

Laurie Bailey
jkb@elpaso.net

----------
> From: Christine Clark <apertnet@IX.NETCOM.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Break out planned!
> Date: Saturday, October 10, 1998 1:47 PM
>
> Hello to All,
>
> My white counts jumped from 900 to 4,800 over night and then again
> jumped overnight to a reading of 9,600 today!  My platelets are staying
> stable and my mouth sores and rash are subsiding.  My doctors are saying
> that I may be able to leave the hospital as early as tomorrow, Sunday
> Oct. 11th.
>
> The Blue Angels are performing this weekend in San Francisco and I have
> had a great view of their practicing this week.  Jack and the girls and
> my sister are coming for the show from my hospital room window and with
> any luck I WILL BE GOING HOME WITH THEM TOMORROW!!
>
> It looks like I am going to fulfull my goal of 2-3 weeks instead of 3-4
> weeks.
>
> Have a great weekend - I know I will!!
>
> All my best,   Christine
=========================================================================
Date:         Sat, 10 Oct 1998 15:23:39 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:         CoH1862@AOL.COM
Subject:      Re: Break out planned!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Fantastic Christine!!!!!!!  Way to go.
        Diane (in Tn.)
=========================================================================
Date:         Sat, 10 Oct 1998 17:08:43 -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:      Yea, Christine: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Good going Christine!
What great news.
Congratulations.

All the best, Scott
=========================================================================
Date:         Sat, 10 Oct 1998 22:43:17 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: Break out planned!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Christine~

I am so very happy to hear how well you are doing!!!  I'll be praying for your
early departure from the hospital.

Christina
San Antonio
=========================================================================
Date:         Sat, 10 Oct 1998 22:46:30 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Nodrmat26@AOL.COM
Subject:      (no subject)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hello all~

I know that everyone will soon get sick of hearing this news, but Zoey...after
being out of the hospital for 6 days, is back in again.  This time it's
pneumonia.  A very mild one, we caught it early thank goodness.  She's
actually supposed to come home tomorrow if she does well tonight.  She's in
good spirits and she's got an excellent nurse who knows us both very well, so
I think she might actually go home when expected to this time.

Christina
San Antonio
=========================================================================
Date:         Sun, 11 Oct 1998 00:48:17 -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: Break out planned!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Go get 'em Christine.  This is wonderful news.
Pat and EvaJessie
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of the shore
for a very long time.  Andre Gide
=========================================================================
Date:         Sun, 11 Oct 1998 00:48:24 -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:      another breakout --- this time for Zoey!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Christina,  what a time hyou've had with Zoey's health.  Hope she gets
sprung ktomorrow too.

Pat and EvaJessie
 
 
 

  A very mild one, we caught it early thank goodness.  She's
>actually supposed to come home tomorrow if she does well tonight.  She's in
>good spirits and she's got an excellent nurse who knows us both very well, so
>I think she might actually go home when expected to this time.
>
>Christina
>San Antonio
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of the shore
for a very long time.  Andre Gide
=========================================================================
Date:         Sat, 10 Oct 1998 23:32:39 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Robyn Johnston <robyn@ORDATA.COM>
Subject:      Re: Break out planned!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Christine, this is great news!  I wish you all the best.  You are tough as
nails!  Once you break out, try to continue getting your rest!  HA!!!  :-)

Best of luck!
Hugs, RObyn J
=========================================================================
Date:         Sun, 11 Oct 1998 08:34:50 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: Break out planned!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

How wonderful it is to receive good news....CONGRATULATIONS
 

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sun, 11 Oct 1998 11:06:17 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:         ETolson643@AOL.COM
Subject:      Re: Break out planned!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Christine

Yahoo!!!!!
 

Beth Tolson (Boston)
=========================================================================
Date:         Sun, 11 Oct 1998 21:34:16 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:      Fwd: The Genie...
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Thought you all might enjoy this!

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From: Clublevel1@aol.com
Return-path: <Clublevel1@aol.com>
To: HBTailgate@aol.com, ANNETRAIL@aol.com, PsycLdyX3@aol.com, Eveli@aol.com,
        BchChick41@aol.com, DBP757@aol.com, GSieb91515@aol.com
Subject: Fwd: The Genie...
Date: Sat, 10 Oct 1998 08:28:37 EDT
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From: SBB130@aol.com
Return-path: <SBB130@aol.com>
To: Clublevel1@aol.com, Neon512@aol.com
Subject: Fwd: The Genie...
Date: Fri, 9 Oct 1998 08:56:53 EDT
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From: Drive355@aol.com
Return-path: <Drive355@aol.com>
To: SBB130@aol.com, LinksAA@aol.com, TKD35@aol.com
Subject: Fwd: The Genie...
Date: Fri, 9 Oct 1998 03:08:00 EDT
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From: Ugabldawg@aol.com
Return-path: <Ugabldawg@aol.com>
To: RattDog@aol.com, Drive355@aol.com, Graves223@aol.com, Bigolhurt@aol.com,
        JunKody@aol.com, Peek14@aol.com, LucentBP@aol.com, Roper0101@aol.com
Subject: Fwd: The Genie...
Date: Wed, 7 Oct 1998 23:51:31 EDT
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From: ANGEL21884@aol.com
Return-path: <ANGEL21884@aol.com>
To: Olivia Adams <graciea@arches.uga.edu>, Amanda Akins <ala@arches.uga.edu>,
        eclonts@arches.uga.edu, elrod@arches.uga.edu, ccsu1825@earthlink.net,
        Ugabldawg@aol.com, CMNSHW@aol.com, mosleyc@merc.rx.uga.edu,
        Alison Payne <alibaba@arches.uga.edu>, hemiorange@juno.com,
        JRUTH@aol.com, Sjruth1055@aol.com, shannons@arches.uga.edu,
        jsimms@ix.netcom.com, Stoner585@aol.com, vvanis@arches.uga.edu,
        jvest@arches.uga.edu, Aaron Waters <SNOWPUTTER@aol.com>
Subject: The Genie...
Date: Wed, 7 Oct 1998 23:39:02 EDT
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Subject: The Genie

 A man was walking along a California beach and stumbled across
 an old  lamp.  He picked it up and rubbed it and out popped a
 genie. The genie said  "OK, OK. You released me from the lamp
 blah blah blah. This is the fourth time this month and I'm
 getting a little sick of these wishes so  you can forget about
 three. You only get one wish!"  The man sat and thought about it
 for a while and said, "I've always wanted to go to Hawaii but I'm
 scared to fly and I get very seasick. So  could you build me a
 bridge to Hawaii so I can drive over there to visit?"  The genie
 laughed and said, "That's impossible. Think of the logistics  of
 that. How would the supports ever reach the bottom of the
 Pacific?  Think of how much concrete...how much steel!! No, think
 of another wish."  The man said OK and tried to think of a really
 good wish. He said,

 "I've been married and divorced four times. My wives always said
 I don't care and that I'm insensitive. I wish that I could
 understand  women. Know what they are thinking when they give me
 the silent treatment, know why they are crying, know what they
 want when they say  'nothing'...."

 The genie said, "You want that bridge two lanes or four?"

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=========================================================================
Date:         Sun, 11 Oct 1998 21:36:26 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: Break out planned!
Mime-Version: 1.0
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Christine-

We are so happy for you and your family.  You really are remarkable.  I guess
determination (and a lot of praying) really does work.  We wish you all the
best.

Brenda
Houston
=========================================================================
Date:         Sun, 11 Oct 1998 22:14:53 -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>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Christine,

What great news! Hope you continue to break records all the way and that you
will be able to put this all behind you soon. We  are trilled for your
family to be able to have you home with them. Wishing you all the best.

The Fosters
=========================================================================
Date:         Mon, 12 Oct 1998 22:18:12 +1300
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:      Attention-v-Concentration
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Further on the discussion re attention deficit, the following comes from the "Hidden Handicap" by Dr Gordan Serfontein, Pub. Alan Bateman, 1989 ISBN 0-949135-26-7

ATTENTION
The awareness that the child has for his surroundings and an alertness to the changes in the environment, referred to as Attention Span.

CONCENTRATION
is the ability of the child to focus in on one particular feature of that environment an direct his attention and thought processes solely upon that particular feature.

ATTENTION SPAN PROBLEM
The child tends to be very easily distracted and responds to even the slightest noise in the classroom.  He is often very restless and fidgety and frequently disrupts other children in the classroom because of his inability to sustain attention.

POOR CONCENTRATION
The child tends to be a daydreamer.  Will be aware of various aspects in the environment but will have difficulties in concentrating his mind on a selected topic for a period of time.  Usually selects something of more interest to himself such as a forthcoming party rather than what is being taught in the classroom at the time.  Tends to be a procrastinator and will generaly put off until tomorrow what can be done today - has trouble starting and completing assignments.  Teachers complain he takes a long time to initiate or complete work, if it is done at all.  The day dreamer will often not be picked up in the classroom because he sits still, does not draw attention to himself and does not disrupt the class.  At home he does not easily respond to instructions from the parents - may be thought to be deaf.  He has poor looking and listening skills.
=========================================================================
Date:         Wed, 12 Aug 1998 14:31:13 -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:         Andrea Gartner <agartner@PEGANET.NET>
Subject:      Way to go Christine!
MIME-Version: 1.0
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Christine,

Way to go!!!
I am so glad to hear that you are doing so much better.  I hope you
continue to have many more positive news.

-Andrea
=========================================================================
Date:         Mon, 12 Oct 1998 17:23:46 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:         BBarn60368@AOL.COM
Subject:      Fwd: Check out Sending You Angel Kisses!
Mime-Version: 1.0
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From: Philliedg1@aol.com
Return-path: <Philliedg1@aol.com>
To: BBarn60368@aol.com
Subject: Check out Sending You Angel Kisses!
Date: Mon, 12 Oct 1998 06:12:06 EDT
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

 <A HREF="http://www.angelfire.com/hi/EvasPlace/angelkisses.html">Click here:
Sending You Angel Kisses!</A>

--part0_908227425_boundary--
=========================================================================
Date:         Mon, 12 Oct 1998 17:36:43 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
Subject:      Break out planned!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit

Christine:

So great to hear you are doing very well!!
Hope you are home today.

The Bradley's
=========================================================================
Date:         Mon, 12 Oct 1998 21:31:04 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:         Yonstein@AOL.COM
Subject:      Re: Break out planned Zoey & Christine
Mime-Version: 1.0
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To Christine, I hope by the time you read this, you are home with your family
and able to rest and continue to get well.  Keep up the good work and stay
strong.

Zoey, I hope Mom is reading this and you are home with her, too.  Hang in
there, kiddo.  You are a fighter, too.

Best wishes,

Janine
=========================================================================
Date:         Tue, 13 Oct 1998 09:39:55 -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:      Caroline Tingley
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

I spoke with Stephanie Tingley last night.  She asked me to put a note on
the listserv for her since she is not a member. Yet.

For those of you who do not know her, The Tingley's have a 5 month old baby
with apert's and are from Crisman, Il.

Baby Caroline is having her first surgery Thursday morning which will be
her cranial. Surgery will be done in Indianapolis.

Stephanie has asked that you all pray for them that all goes well and keep
them in your thoughts.
Like the rest of us, she is very scared.

The baby does have a bit of a runny nose so ther is a chance of a
reschedule but at this time it is a go.

Thanks,

Judy
=========================================================================
Date:         Tue, 13 Oct 1998 14:46:21 -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:      Caroline Tingley
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit

Judy,

Let Stephanie know that we will be praying for Baby Caroline.

Regards,

Martha
=========================================================================
Date:         Tue, 13 Oct 1998 21:20:46 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:      Zoey
Mime-Version: 1.0
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Hello everyone!

Zoey came home yesterday and is in very good spirits.  She's closer to walking
and it seems as if everytime she comes home from the hospital she ventures a
little bit farther, gathering more bravery each and every time.  Boy are we in
trouble when she starts walking.  I  can just see it now.  "Where's Zoey?"
will be the most common thing heard in our house.  (smile).  Hopefully we stay
home a little longer this time.  Thanks everyone for the support.  Good luck
to baby Caroline on her first surgery.

Goodnight,
Christina
=========================================================================
Date:         Tue, 13 Oct 1998 21:17:53 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: LSAYLAN@AOL.COM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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        HELLO MY NAME IS LIZ SAYLAN I AM 29 YEARS OLD SOON TO BE 30. I WAS BORN ON
NOVEMBER 16,1968 IN QUEENS, NEWYORK , AT THE NEW YORK HOSPITAL. I AM THE
YOUNGEST OF THREE GIRLS, THE ONLY ONE IN MY FAMILY WITH APERT'S SYNDROME. I
HAVE HAD NUMEROUS SURGURIES ON MY HANDS AS WELL AS CRANIOFACIAL SURGERY.
        I HAVE HAD SO MANY SURGERIES THAT I HAVE TO LOOK AT MY MEDICAL RECORDS TO
REFRESH MY MEMORY. I KNOW THAT I DIDN'T GO HOME FROM THE HOSPITAL TILL  I WAS
ALMOST A YEAR OLD. BECAUSE I HAVE HAD SO MANY SUGERIES IT WOULD REQUIRE YOU
INQUIRING ABOUT THEM FOR ME TO GO INTO DETAIL.
        I HAVE A VARIETY OF HOBBIES ONE OF MY FAVORITES IS NOW GETTING ON THE
COMPUTER SINCE I RECENTLY BOUGHT ONE. I LOVE TO WATCH BASEBALL & BASKETBALL,
FOOTBALL. I LIKE TO PLAY POOL, GO SWIMMING. I HAVE THREE CATS (2MALES AND 1
FEMALE) THEIR NAMES ARE FROSTY, HUNTER & MONA. I LIKE TO LISTEN TO A VARIETY
OF MUSIC ON THE RADIO OR ON COMPACT DISC.
        I GRADUATED FROM HIGHSCHOOL 10 YEARS AGO, TOOK SOME COURSES AT GWINNETT
TECHNICAL INSTITUTE, BUT DUE TO LACK OF INTEREST DID NOT FINISH. I WORK FULL
TIME FOR PUBLIX SUPERMARKETS IN ALPHARETTA NEAR WHERE I LIVE. I WORK AT THE
CUSTOMER SERVICE DESK THERE. I HAVE HAD NUMEROUS JOBS, I HAVE BEEN A WAITRESS
FOR PIZZA HUT, THEN A SHIFT MANAGER FOR THEM, I HAVE WORKED IN RETAIL FOR WAL-
MART AS A CSM(CUSTOMER SERVICE MANAGER) AND OTHER PLACES.
        FOR THE LAST 30 YEARS OF MY LIFE I HAVE LIVED MY LIFE AS NORMAL AS POSSIBLE.
I HAVE OVERCOME MANY DIFFERENT OBSTACLES IN MY LIFE HAVE NEVER LET ANYONE MAKE
ME FEEL LESS THAN . AS I BRING THIS LETTER TO A CLOSE I LOOK FORWARD TO
HEARING FROM YOU ALL REAL SOON.
                        SINCERLY,

                                        LIZ SAYLAN
=========================================================================
Date:         Tue, 13 Oct 1998 22:23:19 -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:      Re: LSAYLAN@AOL.COM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Liz Saylan wrote:
>
>         HELLO MY NAME IS LIZ SAYLAN I AM 29 YEARS OLD SOON TO BE 30. I WAS BORN ON
> Hi Liz, nice to hear from you. I have a question since you are a football fan.
I live in Canada and we have the Canadian Football League (CFL) vs. your
NFL in the United States. I have had many discussions with people in the
states about your NFL vs. our CFL football. One of the major differences
is the number of downs....in the CFL we have only 3 downs which makes
for a much faster paced game. To me the NFL is much too slow compared to
the CFL. There are some other differences...but they are minor.

Have you ever watched our more exciting game?..oops I mean the CFL game?

By the way...I have a six year old daughter with Aperts...she isn't into
football but loves rodeos and horses. I took her to a rodeo in the
summer, bull riding, etc. and she loved it!

Talk to you later...and welcome!
=========================================================================
Date:         Tue, 13 Oct 1998 22:37:21 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: LSAYLAN@AOL.COM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 10/13/98 7:33:43 PM Pacific Daylight Time,
macdonal@GOLDEN.NET writes:

<<
 >>
HEY THANKS FOR THE EMAIL!
NO I HAVEN'T WATCHED FOOTBALL IN A LONG TIME AND I HAVE NEVER SEEN CFL. TELL
ME MORE ABOUT YOUR DAUGHTER AND WOULD YOU LIKE TO KNOW MORE ABOUT ME

                                        TALK TO YOU SOON!
                                                        LIZ
=========================================================================
Date:         Tue, 13 Oct 1998 22:56:33 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      (no subject)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

HOPE EVERYONE IS DOING WELL TONIGHT! I WANT TO THANK THOSE OF YOU WHO HAVE
ALREADY WELCOMED ME TO THE GROUP, YOU MADE MY NIGHT BY SENDING ME EMAILS.
THANK YOU FOR CREATING THIS PAGE SO I CAN GET IN TOUCH WITH SO MANY OTHERS WHO
LIKE ME HAVE APERT'S SYNDROME. ANYWAYS I  JUST WANTED TO SEND A NOTE OF THANKS
AND HOPE TO TALK TO EVERYONE REAL SOON!
                                                                                        LIZ SAYLAN
=========================================================================
Date:         Wed, 14 Oct 1998 12:03:01 -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:         Steve & Stacy <sshb@EROLS.COM>
Subject:      Re: Break out planned!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Great News Christine!!!!! We will continue to pray that everything stays
on track.
Steve and Stacy Bell
=========================================================================
Date:         Wed, 14 Oct 1998 12:09:38 -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: LSAYLAN@AOL.COM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Welcome Liz!
My daughter is 22 months with Apert syndrome.  Brooke has had a rough time with medical
issues but is getting over her hurdles slowly but surely.

Stacy
=========================================================================
Date:         Wed, 14 Oct 1998 14:04:29 -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:      Re: LSAYLAN@AOL.COM
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit

Hi Liz,

We are the Bradley's and we have a daughter, Michelle that was born with
Apert Syndrome. She is almost 8 years old, she is doing great and yes we
forget all the surgeries she has had very easily. She also loves swimming.
We are not football fans at all, we just like to do all sorts of things as
a family. We are very close. Good to hear from you.

Ryan, Martha & Michelle Bradley
=========================================================================
Date:         Wed, 14 Oct 1998 16:18:11 -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:         Doug Lee <DOUGLEE@JWHOMES.COM>
Subject:      Asher Emeline Lee
MIME-Version: 1.0
Content-Type: text/plain

Hello all.  My name is Doug Lee and I am the proud father of a baby girl
born 10/05/98.  My wife's name is Ondra.  We named our daughter Asher
Emeline.  Asher has been diagnosed with Apert Syndrome.  Of course this
is all new to us as we had never even heard of Apert before Tuesday
afternoon.  Needless to say, we have learned a great deal in the past
week.  While Asher has the fusion in the hands and skull that
distinguish Apert, she is otherwise healthy.  Her heart and lungs seem
normal, although she is requiring a little bit of oxygen.  We live in
Griffin, GA, just south of Atlanta and have been at Egleston Children's
Hospital ( a truly wonderful place ) since Tuesday.  Asher is coming
home today for the first time and we are very excited.  I know we have
many Dr.'s appointments and surgeries in the days ahead but really am
overwhelmed by it all.  Any comments on what to expect as we go forward
would be appreciated.
=========================================================================
Date:         Thu, 15 Oct 1998 03:48:06 -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:         Carlos Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject:      Welcome
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Welcome to Liz and to the Lee Family (Doug, Ondra and Asher).
        My wife is the one that usually writes on the list, but now with the
kids being 3, she doesn't have the time anymore. For this reason I am
going to write this time.
        We are Claudia, Rafael, Felipe and Carlos (me) Ize. Rafael and Felipe
are twin brothers, born 3 years ago (it does look like that long) in
Stillwater, Oklahoma.
        Felipe was born with Apert syndrome, which nobody here in Stillwater
(population 60,000) ever heard about. We had to go to Oklahoma City to
find that out.
        He is a healthy kid, that likes to run, play, eat, eat, and eat. He
also likes his shadow a lot (we still don't now why).
        Doug, my advice to you is that you don't have to get desperate. There
are a lot of  us parents of children with this syndrome and also adults
with it, that are doing great. This kids are tougher than you can
imagine. Just ask some of the adults that are on the list and you will
see.
        If we can be of any help, to any of you, just contact us. We will be
more than happy to help, or at least try to.

        Ize Family.
=========================================================================
Date:         Wed, 14 Oct 1998 18:05:45 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: Welcome
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Welcome to Liz and the Lee Family

We are the Grahams (Jennifer and Joe) and our little boy, Jordan, is already
13 months old. It seesm just like yesterday we were bringing him home...Now we
can't get him to stop trying to stand on his head....its amazing

Hope all is well out there

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Fri, 14 Aug 1998 17:20:09 -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:      Re: Asher Emeline Lee
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Hi Doug and Family,

Welcome to the listserv.  My name is Andrea Gartner.  I am a 20 yr old with
Apert Syndrome.  I live in Cape Coral, FL.  I'm currently finishing up my
sophomore year in college.  I'm planning to major in medical psychology.
When I'm not studying (whenever that is?)  I love to bowl.

I hope you enjoy this listserv.  I'm glad you came aboard.  It is like
second family to me.  You can find a picture of me and more about me on
Teeter's Page If I can help you in any way, or if you have any questions,
I'll be more than happy to help and answer them.  My e-mail address is
agartner@peganet.com.

I wish Asher and your family all the best of luck!
-Andrea
=========================================================================
Date:         Wed, 14 Oct 1998 19:39:43 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:         BBarn60368@AOL.COM
Subject:      Re: LSAYLAN@AOL.COM
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Welcome Liz!
Glad you are with us now.  It sounds like you live near my home town.  I am
from Rome, Ga. originally.  We live in Lake Mary, Fl. now, just north of
Orlando.

I have a daughter, Shirley, who has Apert.  She is 5.  She also loves cats.
She has a black one named Lizzie, believe it or not.

I have several questions.  You mentioned you graduated from high school.  Did
you have any trouble in school?  Shirley is in a primary communications
kindergarten and they intend to keep her there next year too.  They say to
increase her self esteem and confidence.  I'm not so sure I agree with the
thought behind that.  I'm afraid she will get bored.  She went to pre school
for 2 years and already knows the kindergarten basics now.

How old were you when you had your first mid-face advancement?  (If you have
had any of that type surgery.)  Have you had any of your surgery in Atlanta?

Is there anything you cannot do with your hands?  Shirley really has not tried
to unbutton buttons.  Do you have trouble there?

I was really impressed that a good bit of your work experience has been in
customer service.  You go girl!  I have a lot of respect for you.  It looks
like you have not let Apert's hold you back.

Well, I better hold off for the rest.

Alice in Orlando
=========================================================================
Date:         Wed, 14 Oct 1998 19:49:01 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:         BBarn60368@AOL.COM
Subject:      Re: Asher Emeline Lee
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Dear Doug:
Congratulations on the birth of your daughter!  I know it does seem so
overwhelming at first, but just take it one day at a time.  It is such an
adventure.  It certainly is tough at times, but it is wonderful all at the
same time.  My daughter, Shirley, has Apert.  She is 5 and I can honestly say
her birth is one of the best things that has ever happened to me.  Just rely
on the listserv and don't be afraid to ask questions.  We've all been down the
very same road you have just turned down and we are glad to help in any way we
can.  It's a great group of people and so very supportive.

Glad you've joined us,
Alice in Orlando, Fl.
=========================================================================
Date:         Thu, 15 Oct 1998 14:48:58 +1300
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:      Buttons (was LSAYLAN@AOL.COM)
Mime-Version: 1.0
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>Is there anything you cannot do with your hands?  Shirley really has not tried
>to unbutton buttons.  Do you have trouble there?

Alice, Amy has finally learned to unbutton buttons at 7+3/4yrs old (I do admit she likes her Mum and Dad doing things for her!) but still can't/won't button them up.
 

Ann
NZ
=========================================================================
Date:         Wed, 14 Oct 1998 22:11:11 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:         Nodrmat26@AOL.COM
Subject:      Re: Welcome
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To Liz and the Lee Family~

Hello, my name is Christina Mathis and I have two daughters, Tia (5) and Zoey
(1.5).  Little Zoey has Apert Syndrome.  Her picture is also on Teeters page.
I think the address is www.apert.org.  I may be wrong...can anybody help me
out here?  Although, it's an old one, so maybe I'll attach one after this
"letter".  Zoey was given a tracheostomy at 3 weeks old and spent the first
two months of her life in the hospital.  As someone else before has said, she
is the best thing to ever happen to me.  I say this because I saw what a mess
I was before Zoey came into my life and have been changing ever since to be a
better person.  Zoey is a wonderful little girl who is very feisty and knows
how to get what she wants.   I could go on and on but I don't want anyone to
get tired of reading this "book".    To the Lee family.  That's great that
you'll be taking Asher home so soon, it was very hard leaving Zoey at the
hospital as long as I had to.  My advice is to never give up, never despair,
every child we get is a gift from God, and though times may/will get tough, we
can make it through.  I love Zoey so much; everything that I've had to go
through or give up is more than worth it.
Congratulations on your new baby girl.

My e-mail address is:  nodrmat26@aol.com
Sincerely,
Christina
San Antonio
=========================================================================

Date:         Wed, 14 Oct 1998 21:28:39 -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:      Welcome to our newcomers
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A big welcome to Liz and Asher.
I am NIck Amerman's mother. Nick is eight years old and in 3rd grade
special education classes.  Nick is a very energetic little guy. He has had
12 or 13 surgeries to date. Can you believe I lost count?

To Liz: You sound like a real inspiration for us with the younger kids.
Hang in there and keep us posted on you. I just love to hear what you older
Apert's have accomplished.

To Asher's parent's: I am so glad that you found us.  When Nick was born,
we felt all alone. At that time, resourses were rather limited.  finding
Teeter's page will be a great help to you and you will also make alot of
new friends along the way. I know I have.

Nick and I vacationed with Don, Cathie and Teeter for a few days last
summer and some of us from the midwest had a get-together also. It was the
Jefferson's, the Bailey's. (You can meet them on Teeter's page alon with
Nick) and The Tingley's who are not on the listserv.
We had a great time with all.

Interesting little tidbit for you also.
My niece Tammi and her husband Paul sponser Bronco McCart who is a middle
weight boxer.  A
few years ago, he held the world championship title, but lost it last year.
He is now going to try to get it back. Anyway, Sugar Ray Leonard is now
taking Bronco under his wings and is going to manage him.  Last Tuesday,
Sugar Ray was in my hometown of Monroe, Michigan signing up Bronco and he
alos went golfing. Well, my niece's husband went golfing with them and had
a great time.

After the golf game,  Paul had to catch a flight out of Detroit to go to a
Carstar meeting.  Sugar Ray had to go to the airport too so he and his
companions followed Paul to the airport since they really didn't know h
 

ow to get back to the airport.  Paul went to the car rental place and
waited for Sugar Ray to return his car and then Sugar Ray rode with Paul to
the terminal.
As he was getting our of the Expedition, Sugar Ray gave Paul one of his
business cards, told him when he go t his film developed to send the
pictures to him and he would autograph them and send them back.
I wish something exciting would come my way.

Nick was real excited today.  He just had his last soccer game yesterday
and today was the pizza party.  He had a great time there.
When I went to pick him up, I just couln't believe all he got. Each kid got
their own trophy and soccer pin along with a scrapbook with several photos
of themselves playing the game.  This all just made him feel so special.

To those of you that responded to me personally and on the listserv about
the Tingley's. I am going to make copies and mail those to Stephanie.
Hopefully baby Caroline's surgery will go off without a hitch and a fast
recovery tomorrow.

Judy
=========================================================================
Date:         Wed, 14 Oct 1998 23:03:56 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Asher Emeline Lee
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        HELLO MY NAME IS LIZ SAYLAN I AM ALMOST 30 YEARS OLD AND I HAVE APERT
SYNDROME. I LIVE IN ROSWELL GA JUST NORTH OF ATLANTA. I AM QUITE FARMILIAR
WITH EGELSTON HOSPITAL , BECAUSE I HAD A LOT OF MY SURGERIES THERE. I WOULD
EXPECT THAT WITH TODAY'S TECHNOLOGY IN THE MEDICAL FIELD THAT THE DOCTORS
SHOULD BE ABLE TO DO MORE FOR ASHER THAN THEY WERE ABLE TO DO FOR ME WHEN I
WAS A YOUNG GIRL.
        I HAVE HAD NUMEROUS HAND SURGURIES AND HAVE LOTS OF SKIN GRAPH SCARS. I HAVE
ALSO HAD CRANIOFACIAL SURGERY WHICH WAS MY MOST TRAUMATIZING SURGERY. I WOULD
LIKE TO LET YOU KNOW THAT IF I CAN BE OF ANY HELP TO YOU AND YOUR WIFE PLEASE
DON'T HESITATE TO ASK O.K. I JOINED THIS GROUP BECAUSE AFTER ALMOST 30 YEARS
OF NOT KNOWING WHAT MY REAL PURPOSE IN LIFE WAS, I REALIZED THAT I NEEDED TO
REACH OUT TO THOSE WHO EITHER HAVE APERT'S SYNDROME OR ARE RELATED TO SOMEONE
WHO HAS APERT'S.
        MY GOAL IS TO BE ABLE TO GIVE SUPPORT AND HELP NOT ONLY TO THOSE WHO HAVE
APERT'S BUT THEIR FAMILIES AND FRIENDS ALSO. I WANT TO HELP GIVE OTHERS HOPE
THAT THEY TOO CAN FOLLOW THEIR DREAMS NO MATTER WHAT THE DREAMS ARE. PLEASE
FEEL FREE TO EMAIL ME AT LSAYLAN@AOL.COM I LOOK FORWARD TO HEARING FROM YOU
SOON.

                                                                SINCERLY,

                                                                        LIZ SAYLAN
=========================================================================
Date:         Wed, 14 Oct 1998 23:08:56 -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:      Welcome
Mime-Version: 1.0
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Welcome to all of the new people.

Our prayers will be with baby Caroline and her family on thursday.

Hope today finds everyone well.

Karen(PA)
=========================================================================
Date:         Wed, 14 Oct 1998 23:21:02 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Buttons (was LSAYLAN@AOL.COM)
Mime-Version: 1.0
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HI THIS IS LIZ HOW ARE YOU ? I AM FINE THANK YOU FOR YOUR EMAIL. IN REPSONSE
TO YOUR QUESTION I CAN'T MAKE A FIST LIKE EVERYONE ELSE, I DON'T HAVE AS GOOD
OF A GRIP IN MY LEFT HAND AS I DO IN MY RIGHT. I THINK IT'S BECAUSE I'M RIGHT
HANDED BUT ALSO BECAUSE MY PALM IS SLIGHTLY BIGGER THAN THE LEFT ONE. ASIDE
FROM THAT I WRITE PRETTY WELL SO I HAVE BEEN TOLD, SOMETIMES I MAY FIND IT
HARD TO OPEN A JAR THAT IS TIGHT. I LOOK FORWARD TO BEING ABLE TO HELP WITH
ANY OTHER QUESTIONS YOU MAY HAVE O.K. YOU CAN ALSO EMAIL ME AT LSAYLAN@AOL.COM
IF YOU WOULD LIKE TOO OR CONTINUE EMAILING ME THROUGH THIS LIST.
                                                DON'T WORRY THINGS WILL SOON START TO LOOK UP!

                                                                                LIZ SAYLAN
=========================================================================
Date:         Wed, 14 Oct 1998 23:33:05 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Welcome to our newcomers
Mime-Version: 1.0
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HI THIS IS LIZ I JUST WANTED TO DROP A QUICK NOTE OF THANKS FOR YOUR EMAIL, IF
I CAN BE OF ANY HELP PLEASE DON'T HESITATE TO ASK I AM NOT SHY ABOUT SHARING
MY LIFE WITH ANYONE. I JOINED THIS LIST FOR MANY REASONS ONE OF THEM BEING SO
THAT I COULD REACH PARENTS OF YOUNG CHILDREN WITH APERT'S AND BECOME FRIENDS
WITH EVERYONE. I HOPE TO BE ABLE TO INSPIRE THE CHILDREN WHO ARE JUST BEGINING
THEIR YOUTH, NEED SOMEONE TO TALK TO. I WANT TO GIVE MY SUPPORT TO THE
FAMILIES AND SHARE MY EXPERIENCES SO THAT MAYBE I CAN HELP MAKE A DIFFERENCE
IN SOMEONE ELSES LIFE.
        PLEASE FEEL FREE TO EMAIL ME ANY TIME AND I ALSO HAVE AN EMAIL ADDRESS OF MY
OWN LSAYLAN@AOL.COM YOU CAN USE EITHER THIS LIST OR MY ADDRESS TO REACH ME. I
LOOK FORWARD TO GETTING TO KNOW YOU AND YOUR FAMILY, BECOMING FRIENDS.

                                                        SINCERLY,

                                                                        LIZ SAYLAN