Hello to all,

While flipping through cable channels tonight, I found a show on the Discovery
Channel called: "Restoring Faces: A Plastic Surgery Miracle."  It was a show
about children with facial differences and the craniofacial teams that worked
with them.  One of the doctors had seen our son, Sammy, while we were in the
D.C. area.  The show was great!  It was, at times, very graphic--showing an
actual mid-face advancement and a cranial-vault reshaping.  The show will be
repeated on the Discovery Channel on Feb 28 at 7pm Eastern Time.  Don't miss
the first 10 minutes, though; that's when they show the Apert's baby.  There
are several other kids shown with Crouzons as well.

As for our son Sammy, he will turn 14 months old this week and is scheduled
for his final finger release this April.  This past week, his neurosurgeon
tentatively scheduled his first cranial surgery for August.  He'll be 20
months old then.  I guess he's one of the "abnormal" Aperts' kids.  His
doctors want to wait with him because he's still meeting all the "normal" kid
milestones and is showing no signs of intracranial pressure.  They say that
waiting will improve his results.  He also eats like a little pig these days!

Bill & Angie Murphey
Little Rock Air Force Base, Arkansas
=========================================================================
Date:         Mon, 22 Feb 1999 01:39:44 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Mary Bresnahan <Munch35738@AOL.COM>
Subject:      Re: Hi
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Sorry I have not written, I have been very busy.  Thanks for the help everyone
and will let you all know the results of the paper.  Mary research paper on
Apert's
=========================================================================
Date:         Mon, 22 Feb 1999 01:54:25 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Nodrmat26@AOL.COM
Subject:      Re: Zoey's Doing OK
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Zoey's Mom here.  Sorry it's taken me until Day #3 to let you know how Zoey's
been doing, but it's been pretty busy.  It' s been a rough three days.  It was
a successful surgery for the most part.  Zoey's palate split during surgery,
but they said that it's not completely abnormal that that happened and they
just sewed it on up and considering that she's in fair amount of pain anyway
(well, not right now she isn't), this palate splitting thing wasn't going to
make it any "worse".  She was/is swollen so bad, it's VERY hard to see her
like that.  She still cannot open her eyes, but is still so zonked, that she
isn't crying and thrashing or anything.  Hopefully they'll let her wake up a
little more tomorrow, get off her vent (CPAP), and start drinking.  Thank you
for all the prayers and thoughts, Zoey might not know cause she can't read,
but it helps me out tremendously.  Thank you.  I'll keep you posted.
Christina
=========================================================================
Date:         Mon, 22 Feb 1999 07:24:56 -0300
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:         Uwe Heinz Schmidt <heinz@NTS.COM.BR>
Subject:      Brasil
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 Alguém fala e escreve Português. Conhecem pessôas no Brasil com Apert,s

>
>
>
=========================================================================
Date:         Mon, 22 Feb 1999 07:47:17 -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:         Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject:      Re: Brasil
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Uwe Heinz Schmidt wrote:
>
>  Algum fala e escreve Portugus. Conhecem pessas no Brasil com Apert,s
>
> >
> >
 

        Sim, nos falamos portugues mas moramos nos Estados Unidos. Troquei
e-mails com a mae de um garoto que mora no Rio, ele deve ter mais ou
menos 15 anos de idade.

        Nosso filho com Apert's tem tres anos de idade.
        Se pudermos ajuda-lo de alguma maneira, e so escrever que teremos o
maior prazer em responder.

        Ate mais, esperamos respostas suas.

        Carlos e Claudia ( Mae e pai de Felipe).
=========================================================================
Date:         Mon, 22 Feb 1999 07:55:30 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject:      Re: Brasil
MIME-Version: 1.0
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I would like to apologize for those of you that don't understand
Portuguese. I didn't realize that I was sending the e-mail to the
listserv. Anyway, a person wrote just asking if anybody here in the
listserv knows anyone in Brazil with Apert's.

        Claudia Ize ( Felipe's Mom).
=========================================================================
Date:         Mon, 22 Feb 1999 07:22:39 -0800
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Apert Mail <apertmail@USWEST.NET>
Subject:      Re: Discovery Channel Show
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on the Discovery Channel, was " New Faces, and Plastic Surgery Miracle"  it was
incredibile I ran around the house, I had no one to call and tell it to. I got a
tape put it in the vcr and everything, was waiting for them the do the surgery on
this little apert baby but they didn't and I screwed up and didn't record any of
it.  :(  I was so bummed, I did see kind of what they did to courtney before, and
what she is going to have done later, wow!!!
   I wanted to tape it so bad, I am so glad it is coming back on, I might be able
to get it this time.
hope everyone is doing well,
      we are all making it through one day at a time without daddy.  =)
    always
                The Jennerjohns

>
>
=========================================================================
Date:         Mon, 22 Feb 1999 11:27:58 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carbide Tech <ruth@CARBIDETECH.COM>
Subject:      Update on Kris
MIME-Version: 1.0
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Hello to Everyone!

Just writing to say Hello to all and wishing that everyone is doing fine.
I wanted to update you on Kris which had her hand surgeries on 2/11.  We
went to her hand doctor on Friday and had her dressing removed.  She had
both hands done, because as I mentioned earlier, We did not want to go
through it again... So far, so good.  The thumbs like very good.  I think
she will be very happy with them, once all of the "wraps" are removed.  She
 is so funny, these kids are so "upbeat" in everything.  She was looking at
her hands and told me "Mom, you what my fingers look like?  ...(Since they
were all swollen)...they look like the bread sticks from the Olive
Garden...The nurse and I were practically in tears laughing!!!  Thank you
all for all your prayers!!

RE: MISS VIVI.  I got a call that they wanted to see her pictures.  Did I
mention this before?  They should already have them.  So continue praying
so that we can bring her to have her surgeries done here.  For those of you
who don't know...Vivi is a 16 year old who lives in Argentina, and I am
working on getting her to the U.S. She has only had 4-6 surgeries done.
Argentina does not have the facilities to do the procedures.  She stopped
breathing on one of her surgeries and had a cardiac arrest so they
cancelled all surgeries for her.  I think we can do this.

We are considering this RED System for Kris.  So many questions.

Brenda do you know if Dr. Stal (Tx. Childrens Hospital) has ever performed
these surgeries?  the nurse did not know when I called.
On Vivi, I am going to see what Shriners tell me, then I will let you know.
 I told the lady right away, "Listen, I could go straight to Marvin
Zindler, but I'll go thru your red-tape, see where that takes us"  She
right away, faxed me an application.  So they are working on it.

To Sarah LeCara's family, (Which by the way, is going thru this RED, I
think)  Any comments?

Happy to hear from all of you.  For many years, we thought we were alone.

God Bless you and yours,
 

Ruth Contreras  (Kris' Mom)
=========================================================================
Date:         Mon, 22 Feb 1999 12:34:09 -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:         "Allison's: GO USA, Inc" <gousa@GOUSAINC.COM>
Subject:      Shawn's Diagnosis
In-Reply-To:  <19990222172841406.AAA159@208.128.2.1.nww.net>
Mime-Version: 1.0
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Hi All!

This is kind of funny so I thought I would share it with the group.

Shawn is 4 1/2 years old.  We had read on the ListServe about A.D.D. in a
lot of Apert children.

Shawn got taken to a Psychiatrist that specializes in things like Attention
Deficit Disorder, etc..  Shawn got diagnosed as being "Manic Happy".  Yes,
not Manic Depressive, but "Manic Happy". The Psychiatrist almost couldn't
keep from laughing as she gave the diagnosis, and Shawn was entertaining
her.  He is soooo funny!

Anyone who has met Shawn, outside surgeries, will probably know what I am
talking about.

Has anyone else on the List Serve had this diagnosis.
 

Mike Allison
=========================================================================
Date:         Mon, 22 Feb 1999 11:26:17 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Sarah LeCara's family
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi, Pat here.  A resp tech that we both know (lives in Bellaire names Betty)
passed a tape along to you a while back.  Just wondering if you viewed it
and what your reactions were.  How is little Sarah doing?  We don't hear
much from you on the list these days.  HOpe all is well with you.
Pat and EvaJessie in Calgary (aka the Peach, Tessier 4/9/7 facial cleft, 6yo)
=========================================================================
Date:         Mon, 22 Feb 1999 13:56:06 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Shawn's Diagnosis
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I love it!! We haven't had this as a formal diagnosis but it certainly fits
Evan!! He is the most consistently happy kid I've ever seen. Those who
evaluate him use terms like "engaging" etc. Did she elaborate on the
diagnostic criteria for this?

Marianne
San Carlos, CA
=========================================================================
Date:         Tue, 23 Feb 1999 10:08:21 +1300
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Shawn's Diagnosis
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Mike

"Manic Happy" is certainly different!!  I'm interested to know more if you feel like sharing.  How does it present?

Amy is certainly a happy lass but I thought she just took after me (Hah!), and from our limited experience of others with the syndrome it does seem to take a bit to bother them.

Ann
NZ
=========================================================================
Date:         Mon, 22 Feb 1999 15:57:53 -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:         "Allison's: GO USA, Inc" <gousa@GOUSAINC.COM>
Subject:      Re: Shawn's Diagnosis
In-Reply-To:  <dc11f057.36d1a846@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi All!

I thought I would be able to pull the diagnosis "Manic Happy" up on a web
site.
I could not find it.

I guess it is possible the psychiatrist was just trying to use terminology
that we could understand.  The Psychiatrist may have been trying to tell us
that he is UniPolar, on the Manic (or happy) side. (Or Hypomanic)  I don't
know.

If there is such a thing as "Manic Happy", I might have to ask Don to help
me start a ListServe for people with Manic Happy disorder.  That would be a
fun ListServe wouldn't it?

A Unipolar diagnosis on the Manic (Euphoric) side seems more reasonable.

I've got to go.  Shawn wants to put on a puppet show for me. :)
 

Mike Allison
=========================================================================
Date:         Mon, 22 Feb 1999 16:17:51 -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:         "Allison's: GO USA, Inc" <gousa@GOUSAINC.COM>
Subject:      Re: Shawn's Diagnosis
In-Reply-To:  <199902222108.KAA09223@smtp2.ihug.co.nz>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi again,

Due to the questions on Shawn's condition, addressed to the ListServe, and
to my e-mail personally, I offer this explanation.

We initially took Shawn in to see the psychiatrist, because in preschool,
his mind tends to  wanders from what he should be doing while with his
therapists.

I had read on the ListServe about others taking medication for ADD.
Attention Deficit Disorder.

We felt like if there was a problem with Shawn's attention, and we waited
until he was in school to check it out, he might be behind, and not be able
to go to the school we have desired for him.

Instead of having therapists, our pediatrician, or teachers evaluate him
for ADD, we decided to go to a professional who should be able to better
pin point if there is really a problem, or something else is present.

I suppose her diagnosis was that Shawn is always incredibly happy, and his
ability to focus on a task assigned him by a therapist, etc.. is not caused
by ADD.  She said ADD and what Shawn has are totally unrelated.  However,
this does not mean the treatment might not fall along the same lines as A.D.D.

I hope this helps :)

Your friend,

Mike Allison
=========================================================================
Date:         Mon, 22 Feb 1999 22:11:27 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Charles LeCara <cal@PHOENIX.NET>
Subject:      Re: Sarah LeCara's family
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding:  quoted-printable

Hello to all
        Here are a few lines' to let you all know how our Sarah is doing. She =
just had her third surgery on both of  her hands to release her middle =
fingers on   2-15-99 now she has all five and she love's them.  She has =
already pulled off the bandages as she is a very independent and busy =
girl we have become very talented replacing her wraps. She also has had =
a cranial vault rebuilt and Lafort III at the same time back in late =
August and had the tools removed on January th. She still has the trach =
because Dr Salyer said her midface did not open enough for her to =
breathe trough her nose. Other than that it just a matter of keeping p =
with her and some ear infections and the normal bugs kid catch. She is =
almost 23 months old and is able to traverse on foot most of the house =
with the help f holding on to furniture and walls if none are available =
she scoots across the floor on her bottom very fast~~  I will be sending =
some new pictures very soon.... It has been very busy around here for a =
long time now but this is still just the beginning And we think Sarah is =
doing Great!!!  We would be very happy to share most all of our =
experiences with anyone who would like more details as we have learned a =
great deal..
All our love=20
The LeCara's=20

-----Original Message-----
From:   baconsmith [SMTP:bluenose@TELUSPLANET.NET]
Sent:   Monday, February 22, 1999 12:26 PM
To:     APERT@LISTSERV.AOL.COM
Subject:        Sarah LeCara's family

Hi, Pat here.  A resp tech that we both know (lives in Bellaire names =
Betty)
passed a tape along to you a while back.  Just wondering if you viewed =
it
and what your reactions were.  How is little Sarah doing?  We don't hear
much from you on the list these days.  HOpe all is well with you.
Pat and EvaJessie in Calgary (aka the Peach, Tessier 4/9/7 facial cleft, =
6yo)
=========================================================================
Date:         Tue, 23 Feb 1999 19:55:06 +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:      Videos and Sarah LeCara's family
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Le Cara Family - Thanks for the update on Sarah - great to hear her fingers are working well.  Don't they adapt so quickly to their new-found and hard-won freedom!

Amy was home with a cold today, and we spent a couple of hours looking at her old videos, starting from the one in utero which she found boring!  It was lovely to see her again when she was a littly and see how well she manipulated things with her Rosebuds - among other things she had a collection of bracelets that she played with and managed very well between her two hands without fingers.  Her Mum thinks she was gorgeous.

So this is just to recommend to those who have not done it - film your Special Ones now, so you can remind yourself, and them, how far they have gone and how amazingly they have developed.

Regards
Ann
NZ
=========================================================================
Date:         Tue, 23 Feb 1999 09:47:15 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Susie Lower <Slower4000@AOL.COM>
Subject:      Re: Videos and Sarah LeCara's family
Mime-Version: 1.0
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In a message dated 2/23/99 12:55:18 AM Central Standard Time,
howrdnan@IHUG.CO.NZ writes:

<< LISTSERV >>
Hello,
      My  name  is  Susan  Lower,  I  am  a  33  year  old  woman  born  with
Apert's  Syndrome.  I  was  born  with  webbed  toes  and  fingers. I  have
had  my  ring  finger  on  both  of   my  hands  removed  when  I  was  three
years  old, my  toes  are  still  webbed  and  I  have  four accessible
fingers  on  each  hand.  I  have  had  some  reconstructive  surgery done  on
my  face  10  years  ago,  the  Doctors  outstreched  my  eye  muscles  when
thhey  operated  on  my  eyes.  I  can  still  see  but  not  long  distance.
I  have  a  little  trouble  breathing  through  my  nose,  therefore  I  have
to  breath  through  my  mouth,  I  asnore  when  I  sleep.  If  I  had  to
go  through  the  surgery  again  I  would  not  do  it.  I  have  trouble
walking  due  to  my  webbed  toes, I  wear  specially  made  orthopedic
shoesevery  day  because  my  feet  are  too  wide  and  webbed. My  brothers
and  sisters  and  their  families  all  think  that  I  am  very  special.One
of  my  nephews  who  is  6  told  his  teacher  that  God  had  me  born
special.
                     Love,  Susan  Lower
=========================================================================
Date:         Tue, 23 Feb 1999 09:17:34 -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:         "Allison's: GO USA, Inc" <gousa@GOUSAINC.COM>
Subject:      Welcome Susan
In-Reply-To:  <c208f611.36d2bf73@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello Susan,

Welcome to the ListServe.

It is nice to have you join us.

My son Shawn has Apert Syndrome and he is 4 1/2 years old.

People like yourself can bring a lot of guidance and help to us who are
just starting down the path.

Are you from New Zealand?
 

Cheers,

Mike Allison
=========================================================================
Date:         Tue, 23 Feb 1999 10:23:31 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Susie Lower <Slower4000@AOL.COM>
Subject:      Re: Welcome Susan
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hello all,
      I   am  from  Parnell, Iowa  but  I   currently  live  in  Iowa
City,Iowa
                                  Regards,  Susan  Lower
=========================================================================
Date:         Tue, 23 Feb 1999 10:48:29 -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:         rhartley@DZIS.COM
Subject:      Andrew Hartley. Cleft Palate Op.
Mime-Version: 1.0
Content-type: text/plain; charset=us-ascii

Hi gang.
Thank you all for the information I received with
reference to our little Andrew's (9mo) Cleft Palate
operation on Monday March 1st. I even got calls
from the cleft palate group. Very helpful. It feels
like the calm before the storm.!

Good luck to all of you and I'll let you know how
things go.

Your friends in PA.
Rich & Karen Hartley.
118 Hartranft Ave
E.Norriton,PA 19401
(610)975-6938 Work.
=========================================================================
Date:         Tue, 23 Feb 1999 09:36:21 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Sarah LeCara's family
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Thanks so much for letting us know how Sarah is doing.  she sounds like the
rest of these kiddos -- full of spunk and surprises.  Happy healing and good
going Sarah.
 

Pat and EvaJessie (ps  did you see the video clips of my little Peach at the
end of that tape?   Cute, wasn't she?)
=========================================================================
Date:         Tue, 23 Feb 1999 10:04:14 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      The Discovery Channel show
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi everybody!   I was chatting online last night with a friend from the
Widesmiles group.  She saw this show and as we talking about it, I realized
that this may be the same show that was aired here in Alberta last spring.
It was produced by Dr. David Suzuki for The Nature of Things (a weekly
science show).

The show began with Brooke, Steve and Stacey Bell.  It then went on to show
(not in order)  a little girl named Katherine who sang When You Wish Upon a
Star.   Katherine is (was) a patient of Dr. John Phillips of Toronto Sick
Kids.  She was born with closed sutures, I beleive the saggital suture, but
not sure.  The surgical segment showed Dr. Phillips with her orbital rim in
his hands, shaping it and setting it back into position.

Also included was a little fellow with Crouzon, also one of Dr. Phillips'
patients and also showed a segment of his surgery which was a mid face
advancement. The little boy tells the doctor that his school mates are
teasing him, calling him 'big eyes'.  I can't recall his name, but his
family, I think may have been Filipino.  Dr. Phillips used hydroxy apatite,
which is a bone material, in part of another surgery for a cranial vault
remodelling (I think). At the same time that Dr. Phillips is mixing this
hydroxy apatite (powder form mixed with sterile water), Dr. Van Der Kolk is
voiced over talking about artificial bone source being one of the most
important new technologies coming into this type of surgery.

As well, there was a segment on a teenage girl born with a growth on her
mandible.  I don't recall the name of this condition, but her surgical team
was headed by Dr. Mulliken of Boston.  In the show she is playing basketball
wiht friends and also canoeing with her dad.

There were a couple of young adults with Crouzon, and the show had several
clips of them and their before and after pictures.

Also, Dr. Craig Van Der Kolk (I beleive he is at Johns Hopkins) was filmed
explaining the distraction device on a little girl (about 7 or 8 yo) whose
mandible or lower jaw was severely recessed and it showed the progress of
hte distraction through a series of still photos.  This little girl did not
have Apert or Crouzon.

That is all I can remember off hand.  I caught almost the entire show on
video tape (this is the one I sent ot Betty in Bellaire and she said she
passed it on to Sarah's family.)

I have only the one copy here and it's tricky sending it across the border
and then worrying about getting it back. Please contact me via private email
and we can talk particulars about getting a viewing copy shared around among
us.  I am happy to share my resources, but also have concerns about not
losing them.  I'm sure you all understand.

Anyway, if this is the same show, it is wonderful.  If it is not, could
someone please let me know so I can tune in on Sunday?

Thanks so much.

Pat and EvaJessie
ps   had a call last night from a mom here in Calgary -- her 6 mo daughter
was born with a 'complex facial cleft'.   We are meeting tomorrow.  I am so
excited.  She is starved for information, and the docs seem to be spoon
feeding it.  Like me, she is a writer and knows how to research, but can't
seem to get her questions answered by the docs.   She says they keep telling
her to take it a step at a time and she seems frustrated.  Boy do I have a
load of information for her.  Just wanted to share.
=========================================================================
Date:         Tue, 23 Feb 1999 14:23:35 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carbide Tech <ruth@CARBIDETECH.COM>
Subject:      Re: The latest News on Kris and others!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hello,

I hope everyone is doing great.

Brenda I hope your periodontal surgery went fine.  with no complicatins.
Hi to George and Melissa, and of course, to Jonathan.

I will include you in our mailing for Kris quinceanera later on this year.
Hope you can make it.

Love Ruth (Kris Mom)

----------
> From: GSieb91515@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: The latest News on Kris and others!
> Date: Tuesday, February 16, 1999 6:59 PM
>
> Ruth,
>
> I didn't realize that Kris was having surgery.  Glad to hear that
everything
> went well.  I know what you mean about the three weeks.  Jonathan is
scheduled
> for his next surgery with Dr. Shenaq on March 1.  So maybe we will run
into
> you there.
>
> I would be glad to host the next get together.  However, it will have to
be
> after Easter before things calm down here a bit.  I'm having periodontal
> surgery on 2/23, then J on 3/1, then Melissa has dance competitions on
2/20,
> 3/5 and 6th in Galveston and 3/26-28 in San Antonio as well as Spring
break
> the week of 3/15.  In between that time George in traveling out of the
country
> on business.  Let me know what would be a good time for everyone else.
>
> Best wishes to Kris on her recovery.
>
> Brenda
=========================================================================
Date:         Tue, 23 Feb 1999 12:36:16 -0800
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:         Richard Tait <rjrtait@MARS.ARK.COM>
Subject:      before we go
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello to everyone!
Just to say hello and good luck to everyone before we leave tonight for
Julia's bi-lateral hand surgery early tomorrow morning.
The specialists are trying to complete all corrections to be done on Julia's
hands in this, her 2nd hand surgery.
We are hoping that this surgery will be different from all of her past
surgeries; that she will be on schedule!  She doesn't do well during
surgery; that's why so much to be done at once.
We feel for all of those who have recently been through surgery, or those
that are going real soon.  Our butterflies and nerves are working overtime
too!!!
Thanks for all the prayers/thoughts/good wishes.  What a special family we
all belong to.
Are you going to be in Vancouver Pat?
Let you know when we're back,
Rene, Julia, and family
=========================================================================
Date:         Tue, 23 Feb 1999 14:08:21 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: before we go
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Rene   won't be in Vancouver until June for Peach's clinic.  Good luck
tomorrow; we'll be waiting to hear how it went.  Say hello to Dr. Doug and
Lorine for us.
Pat
 

>Hello to everyone!
>Just to say hello and good luck to everyone before we leave tonight for
>Julia's bi-lateral hand surgery early tomorrow morning.
>The specialists are trying to complete all corrections to be done on Julia's
>hands in this, her 2nd hand surgery.
>We are hoping that this surgery will be different from all of her past
>surgeries; that she will be on schedule!  She doesn't do well during
>surgery; that's why so much to be done at once.
>We feel for all of those who have recently been through surgery, or those
>that are going real soon.  Our butterflies and nerves are working overtime
>too!!!
>Thanks for all the prayers/thoughts/good wishes.  What a special family we
>all belong to.
>Are you going to be in Vancouver Pat?
>Let you know when we're back,
>Rene, Julia, and family
>
=========================================================================
Date:         Tue, 23 Feb 1999 16:13:20 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Welcome to our family Susan
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi Susan,
Welcome to our family.  I, like you just got into the listserv. and I can't
tell you how wonderful it is.  You can get so much information not to mention
the support that is in here.  It is always good to have someone liike you in
here that can help us parents of children with Apert's get a different view of
what it is like to live with this syndrome.  I have a 4 year old daughter with
Apert's and I can do as much as I can for her but, I can not help her deal
with some of the obsticles she will be faced with when she grows up...that's
when talking with you will help me help her. You and I are very close in age,
I am 35 years old.  There is someone in the listserv. that has Apert's who is
34 years old,  her name is Beth.  If you want to connect with her through her
e-mail it is BOp1912@aol.com.
Best wishes,

Sheila [Paige's mom]
=========================================================================
Date:         Tue, 23 Feb 1999 15:12:45 -0800
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:         rreed <rreed@CABLEONE.NET>
Subject:      Welcome to the family Susie
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi Susie, and Welcome to the family, My name is Maxine (or Max if you like
to call me that) Iam 44 years old and like you I have Aperts. I too have
wide web feet and have trouble finding shoes. I wear special arch supports
that help the calluses on the bottom of my feet. I wear shoes like Reeboks
that come in wide, and in dress shoes I wear aerosoles sandle type. They
seem to feel the best on my feet. Also like you I had a face surgery done
about 23 years ago and I haven't regrated yet. I am married and have a 15
year old teen age girl who is very normal. If you have any questions or you
just want to talk to me my E-mail is rreed@cableone.net or you can call me
at (209) 524-2141 I live in Modesto,Calif. So you'll probley want to E-mail
me instead. It sounds like you have a very supported family like I have.
You'll find the listsvr family very supported too. And there's alot of
Aperts Adults here too and a lot of them your age. Well again Welcome to the
family and feel free to E-mail  me. The rest of the family can E-mail me too
if you have any questions. Happinees Maxine or Max
=========================================================================
Date:         Tue, 23 Feb 1999 19:41:54 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Re: The Beauty of Holland
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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There is this story that I think most of you will like....It's called THE
BEAUTY OF HOLLAND: And this is how it goes................

I am often asked to describe the experience of raising a child with a
disablility- to try to help people who have not shared the unique experience
to understand it, to imagine how it would feel.  It's like this......
     When you're going to have a baby, it's like planning a fabulous vacation
trip - to Italy.  You buy a bunch of guidebooks and make your wonderful
vacation plans. The Coliseum, Thr Michelangelo David, The gondolas in Venice.
You may learn some handy phrases in Italian.  It's all very, very exciting.
     After months of eager anticipation, the day finally arrives, you pack
your bags and off you go.  Serveral hours later, the plane lands.  The flight
attendant comes in and says, "Welcome to Holland".
     "Holland?!?", you say, "What do you mean, Holland? I signed up for Italy!
I'm supposed to be in Italty.  All my life I've dreamed of going to Italy."
     But, there's been a change in the flight plan.  They landed in Holland
and there you must stay.  The important thing is that they haven't taken you
to a horrible, disgusting, filthy place, full of pestilence, famine, and
disease.  It's just a different place.
     So you must go out and buy new guidebooks.  And you must learn a whole
new language.  And you will meet a whole new group of people you would never
have met.
     It's just a different place.  It's slower-paced than Italy, less flashy
than Italy.  But, after you've been there for a while and you catch your
breath, you look around, and you begin to notice that Holland has windmills.
Holland has tulips.  Holland even has Rembrandts.
     But, everyone you know is busy coming and going from Italy, and they're
all bragging about what a wonderful time they had there.  And for the rest of
you life, you will say, " Yes, that's where I was supposed to go.  That's what
I had planned".
     And the pain of that will never, ever go away, because the loss of that
dream is a very significant loss.  But, if you spend your life mourning the
fact that you did'nt get to go to Italy, you may never be free to enjoy the
very special, the very lovely things about Holland.

                     .......Source Unknown........
 

Best wishes,
Sheila [Paige's mom]

 Source Unknown......
=========================================================================
Date:         Tue, 23 Feb 1999 19:10:54 -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:         Michael Sharrow <msharrow@CAMALOTT.COM>
Subject:      Re: The Beauty of Holland
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Thank you...I love Holland.
=========================================================================
Date:         Tue, 23 Feb 1999 20:55:56 -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:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Re: Dr. Anthoney Wolfee
MIME-Version: 1.0
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Andrea,

Hi, yes Anthony Wolfe is our Nicole's doctor.  We are very happy with
the work he has performed on Nicole so far.  As I stated before he is
one of the best in his field and especially when it comes to the cranial
facial surgeries.  He learned from one of the best Dr. Tessier (I'm sure
I spelled it wrong) but I'm sure you've probably heard of him.  Did he
show you the before and after pictures?  He has performed this surgery
on teens and they came out looking great.

As far as Miami Children's we have had very positive experiences there.
Most of their anesthesiologist are familiar with Aperts therefore it
makes it easier when you are under, because they are very familiar with
the breathing problems that are associated with Aperts.  Also the
anesthesiologist there at Miami Children's almost all have worked with
Dr. Wolfe and since he performs a good amount of cranial facial
surgeries they are very familiarized with them.  If I'm not mistaken
when Dr. Wolfe has one of those surgeries to perform he might have some
vote as to who the anesthesiologist will be.  (Don't quote me on that).

Andrea, please give us a call when you come down to Miami, we would very
much love to meet you and if you don't mind visit you at the hospital.
We will be meeting Seth and Dori when they come down next month for
Seths hand surgery which is scheduled the same day as Nicki's except in
different hospitals.
Remember give us a call 954 384-8041
 

Talk to you soon
Raquel Miller

P.S. The Danturs from Argentina also picked Dr. Wolfe for their daugther
Catalina she had her surgery in September.  They picked Dr. Wolfe from
two other well known doctors that they visited in the U.S. so that made
us pretty happy that we have him right in our own back yard...Hope this
helps...

Andrea Gartner wrote:

>  Hi guys, Im wondering if anyones "ange" had surgeries with Dr. S.
> Anthoney Wolfe in Miami.Im sure at least one person did, but I don't
> remember who.I'd like to know what you thought of him and his team,
> especially the anesthesiologist.  (that's who I'm most concerned
> about).  Im assurming it was also done at Miami  Childrens,  so I'd
> like to know your experiance there.  Any info is appreciate.
> Thanks Andreaagartner@peganet.com
=========================================================================
Date:         Tue, 23 Feb 1999 20:43:59 -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:         Randy & Deb Picht <rldpicht@INFO.STARPOINT.NET>
Subject:      Fw: Daughter with Aperts Syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Don,

I have decided that I would share my story.  People in Iowa make note that I
live in Minnesota.  Can't be that far away.  Let's get in contact.
 

-----Original Message-----
From: Don Sears <dsears@scrs.state.sc.us>
To: Randy & Deb Picht <rldpicht@info.starpoint.net>
Date: Monday, February 22, 1999 2:22 PM
Subject: RE: Daughter with Aperts Syndrome
 

What an inspiring story, so unique and still so familiar.  I hope you'll
forward this letter to the listserv.  When you are ready, it would be an
excellent introduction.

Welcome to the family!!!

Don

> -----Original Message-----
> From: Randy & Deb Picht [SMTP:rldpicht@info.starpoint.net]
> Sent: Friday, February 12, 1999 11:33 PM
> To: Don Sears
> Subject: Daughter with Aperts Syndrome
>
> Cathy and Don: You may just want to print this out.
>
> Hello,
>
> I found Teeter's Page. How wonderful that is. I have a daughter by
> the name of Lisa that was born with Aperts Syndrome. She is our only
> child. I want to tell you a little bit about her.
>
> She was born July 29, 1989 in Sioux Falls, SD. (We live in
> Minnesota). Lisa was 8 weeks premature. No one seems to know why she
> was so early. I had the perfect pregnancy (never sick and people said
> I glowed) but one morning my water broke and our town does not even
> have a respirator but we did not know that there was anything wrong
> until after she was born. Lisa spent the first 6 1/2 months in the
> hospital. She weighed in at 4 lbs 6 oz. She could not breathe on her
> own and was immediately put on a respirator. She never bottled. (1)
> In Oct 1989 they put in a G-Tube. With the airways so tiny she could
> not breathe, suck and swallow at the same time. ( We only had the
> G-Tube reversed in 1995).
>
> She had such a regurge problem that they did what they call a nissen
> wrap. They go in and try to tighten the muscles of the esophligus so
> nothing can come back up well it did not work. We had to watch her
> closely to make sure she did not aspirate. It was like a water
> fountain when she would regurge.
>
> (2) 12/6/89 (4 months old, they wanted her to be about 10 lbs before
> they did the surgery) She had her 1st head surgery done in Sioux
> Falls.(She was still in Intensive Care) They basically reshaped her
> head and while they were in there they discovered that her forehead
> was paper thin so they reconstructed her a new forehead and wired it
> in place. That was tough to see her afterwards. The doctors warned
> us that she would look like she had been in a hell of a street fight
> and they were right. All the tubes again, the swallon eyes. Truly a
> parents nightmare.
>
> We were told we could bring her home on 12/24/89 but they wanted to
> see all the equipment that we were using at home including the car
> seat. We go up on a Friday night expecting to bring our daughter home
> for Christmas and it did not happen. I met 2 doctors in the scrub
> room and they told me she had some spells that day and that she had
> turned blue and was stablized but they could not release her this
> weekend. We had RN's lined up in our home and they had gone to the
> hospital to train with the nurses on how to handle Lisa so Randy and I
> could work. To make a long story short we finally got to bring her
> home on 2/17/90. 6 1/2 months old and weighing 13 lbs. 200 days in
> the hospital
>
> She has had 3 hand surgeries
> PT Tubes in 3 times and now has hearing aides
> 6/95 She has had bilateral hip surgery. She was complaining that her
> hip hurt. I took her to the doctor and X-Rays showed the hip bones
> were not going into the hip sockets the way they should so both hips
> were done at the same time. The doctor said as long as she was going
> to be wheelchair bound they would do both the same day. That was nice
> and very successful.
>
> Her toes are fused yet and they will not do anything with them at this
> time. As long as she is walking and doing fine they do not feel a
> need. She wears sandles and when kids ask questions you just answer
> them. They treat her very well. Too good sometimes. There is always
> someone to help her with this or that.
>
> 6/96 Exactly a year to the day after the hip surgeries they went in
> and took out all the pins and screws. (That's another surgery)
>
> 6/97 Lisa went through another Cranialfacial Surgery in Rochester.
> This time they basically took her forehead and put it in the back of
> her head. Took bone from the back of her head (nice and round) and
> put it in her forehead. They took out the wires that the doctors used
> (back in 1989) to wire her forehead in place and replaced it with
> other bone. They took rib bone to fill in gaps in the skull and also
> put rib bone in the bridge of her nose and reshaped her nose and they
> also moved her eyes alittle closer together. We had pictures taken
> before we went for surgery and then a year later and what a
> difference. Alot of the syndrome look is gone.
> We were real hesitant on doing it because of all the risks. They had
> to tell you all the bad stuff. I called the doctor about 3 weeks
> before surgery and told him straight out that I did not feel good
> about this surgery. He explained that he could understand where I was
> coming from. He told me that he is a doctor and hates to see his own
> kids go through surgery. He told me that if Lisa had a mild case then
> we could let it go but she had a severe case and he said you have to
> think of her when she is 16 years old. If you do not do it she will
> never look any better. Now was the prime time to get it done because
> she was young and she would rebound quicker than if we did it at age
> 12 or 13 and beside she would be older and realize it more. So we did
> it. Surgery started at 9:00 a.m. (by the time they had her prepped)
> and we finally got to see her at 10:00 p.m. What a long day.
>
> Every year we go through a Cranialfacial Clinic through the Mayo
> Clinic here in Rochester. Last year they told us that she had to have
> 6 teeth plus the numanary tooth pulled. We are planning on getting
> this done in March. (It is so hard to get in to the Mayo Clinic)
> This is the 2nd try. The 1st time we had it scheduled she came down
> with a cold and could not go under the anesthesia. (Nov 98)
>
> Lisa was also born with out the joints in her fingers and toes. She
> can not bend them. She was born without the corpus colosum (this
> tells the right side of the brain what the left side is doing and visa
> versa) She is mildly retarded. She is in the 3rd grade (Special Ed
> Classes) but always very happy. When she was a baby you never heard
> her cry. If she would fall she would get right up. I think she lived
> with pain for so long that she built up a tolerance for it.
>
> I looked at the pictures of the kids on Teeter's Page and some of them
> look just like Lisa. Lisa has brown hair. I am hesitant to put her
> picture out on the internet.
>
> I think I have written enough for now. Please respond back to me
> sometime. I do have some pictures I could probably send. (Before and
> After.) I have talked to the Niemi family here in Minnesota and there
> are others in Minnesota but I have not talked to all of them. I know
> the Niemi's were taking Jake down to Rochester in December and I'm
> going to have to find out what they thought of Lisa's doctor. He is
> very good at facial reconstruction. The nurses told us that Dr. Bite
> is the one they call in to do surgeries on people who have been in bad
> car wrecks and they have facial injuries.
>
> We just got up on E-Mail last week so I am still learning.
>
> Our E-Mail Address is rldpicht@starpoint.net
> <mailto:rldpicht@starpoint.net>
> My Phone number is 507-532-3787
> Deb & Randy Picht
>
> I hope to hear back from you soon. Please feel free to put our E-Mail
> address out on the list server (what you were talking about on your
> web page) I would love to hear from others with Apert's. (I also need
> to get an e-mail out to Christine Clark)
>
>
>
>
>
>
>
=========================================================================
Date:         Tue, 23 Feb 1999 22:09:03 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Brent E. Young" <beyoung@IX.NETCOM.COM>
Subject:      Re: Fw: Daughter with Aperts Syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Randy & Deb Picht wrote:

> Don,
>
> I have decided that I would share my story.  People in Iowa make note
> that I
> live in Minnesota.  Can't be that far away.  Let's get in contact.
>
> -----Original Message-----
> From: Don Sears <dsears@scrs.state.sc.us>
> To: Randy & Deb Picht <rldpicht@info.starpoint.net>
> Date: Monday, February 22, 1999 2:22 PM
> Subject: RE: Daughter with Aperts Syndrome
>
> What an inspiring story, so unique and still so familiar.  I hope
> you'll
> forward this letter to the listserv.  When you are ready, it would be
> an
> excellent introduction.
>
> Welcome to the family!!!
>
> Don
>
> > -----Original Message-----
> > From: Randy & Deb Picht [SMTP:rldpicht@info.starpoint.net]
> > Sent: Friday, February 12, 1999 11:33 PM
> > To: Don Sears
> > Subject: Daughter with Aperts Syndrome
> >
> > Cathy and Don: You may just want to print this out.
> >
> > Hello,
> >
> > I found Teeter's Page. How wonderful that is. I have a daughter by
> > the name of Lisa that was born with Aperts Syndrome. She is our only
>
> > child. I want to tell you a little bit about her.
> >
> > She was born July 29, 1989 in Sioux Falls, SD. (We live in
> > Minnesota). Lisa was 8 weeks premature. No one seems to know why she
>
> > was so early. I had the perfect pregnancy (never sick and people
> said
> > I glowed) but one morning my water broke and our town does not even
> > have a respirator but we did not know that there was anything wrong
> > until after she was born. Lisa spent the first 6 1/2 months in the
> > hospital. She weighed in at 4 lbs 6 oz. She could not breathe on her
>
> > own and was immediately put on a respirator. She never bottled. (1)
> > In Oct 1989 they put in a G-Tube. With the airways so tiny she could
>
> > not breathe, suck and swallow at the same time. ( We only had the
> > G-Tube reversed in 1995).
> >
> > She had such a regurge problem that they did what they call a nissen
>
> > wrap. They go in and try to tighten the muscles of the esophligus so
>
> > nothing can come back up well it did not work. We had to watch her
> > closely to make sure she did not aspirate. It was like a water
> > fountain when she would regurge.
> >
> > (2) 12/6/89 (4 months old, they wanted her to be about 10 lbs before
>
> > they did the surgery) She had her 1st head surgery done in Sioux
> > Falls.(She was still in Intensive Care) They basically reshaped her
> > head and while they were in there they discovered that her forehead
> > was paper thin so they reconstructed her a new forehead and wired it
>
> > in place. That was tough to see her afterwards. The doctors warned
> > us that she would look like she had been in a hell of a street fight
>
> > and they were right. All the tubes again, the swallon eyes. Truly a
> > parents nightmare.
> >
> > We were told we could bring her home on 12/24/89 but they wanted to
> > see all the equipment that we were using at home including the car
> > seat. We go up on a Friday night expecting to bring our daughter
> home
> > for Christmas and it did not happen. I met 2 doctors in the scrub
> > room and they told me she had some spells that day and that she had
> > turned blue and was stablized but they could not release her this
> > weekend. We had RN's lined up in our home and they had gone to the
> > hospital to train with the nurses on how to handle Lisa so Randy and
> I
> > could work. To make a long story short we finally got to bring her
> > home on 2/17/90. 6 1/2 months old and weighing 13 lbs. 200 days in
> > the hospital
> >
> > She has had 3 hand surgeries
> > PT Tubes in 3 times and now has hearing aides
> > 6/95 She has had bilateral hip surgery. She was complaining that her
>
> > hip hurt. I took her to the doctor and X-Rays showed the hip bones
> > were not going into the hip sockets the way they should so both hips
>
> > were done at the same time. The doctor said as long as she was going
>
> > to be wheelchair bound they would do both the same day. That was
> nice
> > and very successful.
> >
> > Her toes are fused yet and they will not do anything with them at
> this
> > time. As long as she is walking and doing fine they do not feel a
> > need. She wears sandles and when kids ask questions you just answer
> > them. They treat her very well. Too good sometimes. There is always
> > someone to help her with this or that.
> >
> > 6/96 Exactly a year to the day after the hip surgeries they went in
> > and took out all the pins and screws. (That's another surgery)
> >
> > 6/97 Lisa went through another Cranialfacial Surgery in Rochester.
> > This time they basically took her forehead and put it in the back of
>
> > her head. Took bone from the back of her head (nice and round) and
> > put it in her forehead. They took out the wires that the doctors
> used
> > (back in 1989) to wire her forehead in place and replaced it with
> > other bone. They took rib bone to fill in gaps in the skull and also
>
> > put rib bone in the bridge of her nose and reshaped her nose and
> they
> > also moved her eyes alittle closer together. We had pictures taken
> > before we went for surgery and then a year later and what a
> > difference. Alot of the syndrome look is gone.
> > We were real hesitant on doing it because of all the risks. They had
>
> > to tell you all the bad stuff. I called the doctor about 3 weeks
> > before surgery and told him straight out that I did not feel good
> > about this surgery. He explained that he could understand where I
> was
> > coming from. He told me that he is a doctor and hates to see his own
>
> > kids go through surgery. He told me that if Lisa had a mild case
> then
> > we could let it go but she had a severe case and he said you have to
>
> > think of her when she is 16 years old. If you do not do it she will
> > never look any better. Now was the prime time to get it done because
>
> > she was young and she would rebound quicker than if we did it at age
>
> > 12 or 13 and beside she would be older and realize it more. So we
> did
> > it. Surgery started at 9:00 a.m. (by the time they had her prepped)
> > and we finally got to see her at 10:00 p.m. What a long day.
> >
> > Every year we go through a Cranialfacial Clinic through the Mayo
> > Clinic here in Rochester. Last year they told us that she had to
> have
> > 6 teeth plus the numanary tooth pulled. We are planning on getting
> > this done in March. (It is so hard to get in to the Mayo Clinic)
> > This is the 2nd try. The 1st time we had it scheduled she came down
> > with a cold and could not go under the anesthesia. (Nov 98)
> >
> > Lisa was also born with out the joints in her fingers and toes. She
> > can not bend them. She was born without the corpus colosum (this
> > tells the right side of the brain what the left side is doing and
> visa
> > versa) She is mildly retarded. She is in the 3rd grade (Special Ed
> > Classes) but always very happy. When she was a baby you never heard
> > her cry. If she would fall she would get right up. I think she lived
>
> > with pain for so long that she built up a tolerance for it.
> >
> > I looked at the pictures of the kids on Teeter's Page and some of
> them
> > look just like Lisa. Lisa has brown hair. I am hesitant to put her
> > picture out on the internet.
> >
> > I think I have written enough for now. Please respond back to me
> > sometime. I do have some pictures I could probably send. (Before and
>
> > After.) I have talked to the Niemi family here in Minnesota and
> there
> > are others in Minnesota but I have not talked to all of them. I know
>
> > the Niemi's were taking Jake down to Rochester in December and I'm
> > going to have to find out what they thought of Lisa's doctor. He is
> > very good at facial reconstruction. The nurses told us that Dr. Bite
>
> > is the one they call in to do surgeries on people who have been in
> bad
> > car wrecks and they have facial injuries.
> >
> > We just got up on E-Mail last week so I am still learning.
> >
> > Our E-Mail Address is rldpicht@starpoint.net
> > <mailto:rldpicht@starpoint.net>
> > My Phone number is 507-532-3787
> > Deb & Randy Picht
> >
> > I hope to hear back from you soon. Please feel free to put our
> E-Mail
> > address out on the list server (what you were talking about on your
> > web page) I would love to hear from others with Apert's. (I also
> need
> > to get an e-mail out to Christine Clark)
> >
> >
> >
> >
> >
> >
> >

   Hi Debbie,

My name is Kelly Spadini. I am 17 years old. Like your daughter, I have
Aperts Syndrome. I have not been on this listserv for that long but I
must tell you that I am sure grateful that it is here and I think it's a
real advantage to parents who are having little ones with Aperts
Syndrome these days. I was born in 1981 and all my parents got was a few
papers explaining what Aperts Syndrome was.

I have had a lot of surgeries on my skull, hands, etc. They were all
when I was very young so I don't remember any of them. I am getting
ready to have my midface advancement in about 9 months.
I couldn't agree with your doctor more about not waiting, and getting it
done right away. My parents left the decision when I was to have my
midface advancement up to me. I had plenty of opportunities to have it
when I was younger, but I was very scared and was not ready. Well, now
it is different. All I want to do is get it over with and my doctor and
orthodontist keep saying my mouth is not ready and "It will be next
summer, It will be next summer:".  I remember even when I was 12, and
still wasn't ready, one of my doctors saying I should have it soon
because when I reach high school, I will want to do other things like
get a job, and having surgery is not on that list. Now, I totally
understand what she meant.

My school experience has been very good. I have been going to school
with the same people the whole time. They have been absolutely
wonderful. They have learned to accept me. I hope it is the same for
your daughter.

I have been rambling on and on so I will go now. If you ever what
someone older who has been through stares of curiousity and plenty of
comments, please let me know. My e-mail address is Beyoung@ix.netcom.com

Well, until next time,
Kelly
=========================================================================
Date:         Wed, 24 Feb 1999 08:43:01 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Re: The Beauty of Holland
Mime-Version: 1.0
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I love Holland too!  I can't think of anywhere else I would rather be.
Sheila
=========================================================================
Date:         Wed, 24 Feb 1999 13:24:39 -0800
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:         rreed <rreed@CABLEONE.NET>
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Hi Deb & Randy and welcome the family, Your little Lisa sounds like shes
been through alot aready in her ten years. My name is Maxine or Max for
short. I am 44 years old and have Aperts Your story is very inspiring. Iam
always amazed how much these little ones can endure so much. Keep up the
strengh, and hang in there. We'er a strong bunch we Aperts are. If you have
any questions I'll try and answer them I've been around but I know that
there are some swell parents on the listsevr. that probley can help you too.
And like you Iam learning about the computer too, It's a great way to talk
with other Aperts familys Take care and again Welcome to the family,
Happines Maxine or Max from Modesto (it's sunny today Calif.)
=========================================================================
Date:         Wed, 24 Feb 1999 20:05:55 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Shirley Tanner <TANRANCH@AOL.COM>
Subject:      Re: The Beauty of Holland
Mime-Version: 1.0
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What a wonderful story... thanks for sharing. (Now I have to go get  a
Kleenex.)
Shirley Tanner
Mom of Collin (almost 7)
=========================================================================
Date:         Wed, 24 Feb 1999 20:30:46 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Videos and Sarah LeCara's family
Mime-Version: 1.0
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Susan,

It was nice to read your story. My daughter Carlee 8mos. old has Apert
syndrome also. We also think she is very special. She only has a pinky and
thumb so far, but seems to amaze me everyday with what she can do with her
hands. Take care and keep in touch.

The Williams Family
Cristy, Clyde, and Carlee
=========================================================================
Date:         Thu, 25 Feb 1999 11:59:11 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Re: The Beauty of Holland [Shirley Tanner]
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi Shirley,
I'm glad you liked the story.  I still cry when I read it.  I also have a son
named Colin but, it's spelled with only one "L".  He is 8 years ole and my
daughter is 4.

Best wishes,
Sheila
=========================================================================
Date:         Fri, 26 Feb 1999 07:06:33 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Tingley <tstctingley@COMWARES.NET>
Subject:      cleft palate
MIME-Version: 1.0
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Carroline which is 9 months had a sleep study done February 11, and we
found out last week that she is having some obstructive breathing.  So the
doc said we can not close her palate yet because they don't no how well she
would be able to breath.  Has any body else ran into this problem?  We have
another sleep study set for July 5th to check her again.  The doc give us a
nasal spray to try to shrink the membrans in her nose to see if that would
help with her obstructive breathing.
Will this really put her behind in speech if they don't close it right
away?  Well better go have a great day. Will be praying for all the one's
going in for surgery.
 

God Bless
Stephanie & Carroline Tingley (IL)
tstctingley@comwares.net
=========================================================================
Date:         Fri, 26 Feb 1999 12:08:55 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Gail Montes <Gailsvm@AOL.COM>
Subject:      Introduction
Mime-Version: 1.0
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Hello.  My name is Gail Montes and I am the mother of two children, ages 10
and 4.  My 4 year old, Rachel, has an "unclassified" craniofacial syndrome and
has had numerous surgeries thus far.  We are looking into having her plastic
surgeon in Boston using distraction to move out her midface and upper jaw in
the fall.

Have a good day.  Gail
=========================================================================
Date:         Fri, 26 Feb 1999 13:40:56 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ETolson643@AOL.COM
Subject:      Re: cleft palate
Mime-Version: 1.0
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Stephanie:
Tim (17 yrs) had a cleft palate which wasn't repaired for breathing purposes
until he was a year old.  It did not seem to affect his speech.  He did have
speech therapy for many years, but I have always felt that his speech problems
were primarily related to his mouth structure in general.

Beth Tolson
in snowy Boston
=========================================================================
Date:         Fri, 26 Feb 1999 13:51:42 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Mary Bresnahan <Munch35738@AOL.COM>
Subject:      Re: Introduction
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Gail, hello my name is Mary.  Which surgeon are you going to in Boston?  I had
all of my facial surgeries done there at Children's Hospital.  I hope you
don't mind me asking.  Thanks Mary
=========================================================================
Date:         Fri, 26 Feb 1999 18:28:26 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Gail Montes <Gailsvm@AOL.COM>
Subject:      To Mary
Mime-Version: 1.0
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Hi Mary,

I don't mind you asking at all where Rachel goes in Boston.  Rachel also goes
to Children's Hospital.  Her neurosurgeon is Dr. R. Michael Scott, her plastic
surgeon is Dr. Milliken, her oral surgeon is Dr. Ferraro and we see Dr. Murray
Feingold at The National Birth Defects Center in Waltham.

  She just recently had another sleep study which shows obstructive apnea in
her REM sleep...guess we need to figure out what to do next; there's talk of
c-PAP (which was tried once before and failed) and possibly distraction of her
midface and upper jaw.  Rachel had a spinal decompression at the base of the
skull last August and had many complications from that surgery and spent
almost of the fall in Children's.  We got home (for good) the week before
Thanksgiving.  So...if I can, I would like to give her a little bit of a break
before we start doing anything again.

Talk to you later.  Gail
=========================================================================
Date:         Fri, 26 Feb 1999 20:13:40 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Rich Thornquist <rlthorn@EARTHLINK.NET>
Subject:      Re: Introduction
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Hi Gail,

Welcome to the listserv.  My name is Lynn Thornquist and my son Andrew was born
with Apert on 9/05/96.  Do you live in Massachusetts?  Because your doctors are
also our doctors, except for the fact that we use Dr. Nowaks at NBDC.  We also use
Dr. Upton for Andrew's hands.  Andrew is 2 1/2 years old now and doing
wonderfully.  We will be starting surgeries again come this September when Andrew
turns 3.  These surgeries are for his hands though.

I hope you don't mind me asking.....but why is Dr. Mulliken doing the jaw so
early?  We were told that would probably be done with the midface advancement when
he is 7 or 8.  And he always told us that the bones in the face were not strong
enough at this age.  I don't know, maybe your doing doing a midface advancement.
Just curious since we use the same doctors.

It is nice to have you join the listserv and I'm sure you will find it as
wonderful as I have.  I just wish I had found them when I first had Andrew.  But
better late than never.

Have a good day.

Lynn
rlthorn@earthlink.net
=========================================================================
Date:         Fri, 26 Feb 1999 20:18:29 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Fw: Daughter with Aperts Syndrome
Mime-Version: 1.0
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Randy, Deb and Lisa-

Thank you so much for sharing your story and welcome to the listserver.  We
are the Sieberts in Houston, TX.  Our son Jonathan was born on 12/6/96 with
Apert Syndrome and has had 6 surgeries to date and #7 to be done on 3/1
(Monday) to release the last digit on this right hand.  You certainly had a
very rough start with your precious daughter and we hope that things have
stabled for you and that Lisa is not spending so much time in the hospital.

Please continue to share with us.

Brenda
Houston
=========================================================================
Date:         Fri, 26 Feb 1999 20:20:55 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: before we go
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I just read that Julia was having her surgery on the 23rd and hope that
everything went well.  Please let us know how she is doing when you get a
chance.

Brenda
=========================================================================
Date:         Fri, 26 Feb 1999 20:30:44 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Videos and Sarah LeCara's family
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Susan,

Yes, you are very special and don't ever forget it.

Brenda
Houston
=========================================================================
Date:         Fri, 26 Feb 1999 20:35:25 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Sarah LeCara's family
Mime-Version: 1.0
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Tamara-

How's it going with Sarah's bandages.  I called after surgery and talked to
your nurse to see how Sarah made out and she reported all was well.  Things
here have been crazy with Melissa's dance competitions, my periodontal surgery
and George out of the country, not to mention trying to get a little work done
in between.  We just missed you today at Dr. Shenaq's office for our preop.
How's your mom doing?  I think about her all the time and wished she lived
closer so we could help out in any small way.

Call when you can so we can get together.  J has surgery on Monday and
Jennifer and Jordan Graham are coming to visit her mother in Houston on 3/2.
We are planning to get together.  Let me know if you'd like to meet them also.
We can share our war stories and let the kids play.

Hope all is well at  your house.

Brenda
=========================================================================
Date:         Fri, 26 Feb 1999 20:36:52 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Susie Lower <Slower4000@AOL.COM>
Subject:      Re: Videos and Sarah LeCara's family
Mime-Version: 1.0
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Brenda,
         Thank  you  very  much.  I  think  everyone  on  the  listserv  is
also  very  special  people  too. One  of  my  nephews  told  his  teacher
and  his  classmates  that  God  made  me   special  when  I  was  born.  I
am  just  so  happy  that  I  am  a  part  of  listserv, You  all  are
special  people.
                         Love,  Susan
=========================================================================
Date:         Fri, 26 Feb 1999 20:39:00 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Shawn's Diagnosis
Mime-Version: 1.0
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I love this "manic happy" thing.  I tell everyone what a wonderful disposition
that Jonathan has and always seems to be happy (unless he isn't getting his
way) and then he is still easily comforted.  I've never  heard the term used
before but it's definately one I'd like to hear more about.

Brenda
=========================================================================
Date:         Fri, 26 Feb 1999 20:42:08 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Discovery Channel Show
Mime-Version: 1.0
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You sound like me.  I had people calling me and then I couldn't even find a
blank tape.  I missed parts of both shows and would love to get a copy if
anyone knows the address or phone to call and get one from the broadcasting
stations.

Brenda
Houston
=========================================================================
Date:         Fri, 26 Feb 1999 20:43:26 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Zoey's Doing OK
Mime-Version: 1.0
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Christina,

Just wanted to wish Zoey well and hope that she is recovering nicely.  Please
let us know how she's doing.

Brenda
=========================================================================
Date:         Fri, 26 Feb 1999 21:09:38 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Susie Lower <Slower4000@AOL.COM>
Subject:      Re: Videos and Sarah LeCara's family
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Brenda,
         Thank  you,  I  think  everyone  on  listserv  is  very  special
=========================================================================
Date:         Fri, 26 Feb 1999 21:12:45 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Update
Mime-Version: 1.0
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Karen,

Wishing Billy a quick recovery and hoping that you are getting some rest.  Let
us know how he is doing.  He sure has had a tough time of it.

Brenda
Houston
=========================================================================
Date:         Fri, 26 Feb 1999 21:21:50 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Update on Jackie Lynn
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Mark,

Let us know how your appt. goes with Dr. Fearon.  We would be very interested
to hear what he says about the bends.  I've been told that it isn't really
that the joint is missing but rather that the genetic make up of the tendon
that makes that joint work doesn't function.  We see Dr. Salyer in Dallas for
our son's cranial work and have seen Dr. Fearon's work on some of the kids
hands/feet.  He does great work.  Best of luck.

Brenda
Houston
=========================================================================
Date:         Fri, 26 Feb 1999 21:33:12 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         GSieb91515@AOL.COM
Subject:      Re: Balance
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Ann,

I've never heard the terms monocular and binocular vision but it sounds like
what Jonathan has.  We had our appt. with the Opth. a few weeks ago and she
said that he doesn't have any depth perception because he doesn't align both
eyes at the same time.  He has strabismus and we have not been able to patch
him because of having to deal with the hand bandages and he just won't go for
it.  We are now using drops to blur the good eye and force him to use the bad
(same principle as the patch) and it's working really well as far as not
bothering him like the patch.  Once the vision is stabilized they will do the
eye muscle surgery.  Has Amy had any eye surgeries?

Brenda
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Date:         Fri, 26 Feb 1999 21:41:36 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         GSieb91515@AOL.COM
Subject:      Re: Sarah LeCara's family
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Sorry folks.  This message was meant for the LeCara's personal email.  I
forgot to change the "send to" address before I sent it.  I've gotten behind
on the mail and was trying to catch up quickly.

Brenda
Houston
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Date:         Sat, 27 Feb 1999 00:31:16 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Mary Bresnahan <Munch35738@AOL.COM>
Subject:      Re: To Gail
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Gail, you have great doctors.  I had Dr. Ferraro and Dr. Muliken and the other
one.  Except the neurosurgeon.  I have finished my research project.  I did it
on Apert syndrome.  Dr. Ferraro is the one that I got me interested in Aperts.
If you have questions you can email me privately.  Mary
=========================================================================
Date:         Sat, 27 Feb 1999 22:37:27 +1300
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Balance
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Hello Brenda

What you say about Jonathan sounds very much like Amy's eyes, but she has strong vision in both eyes so hasn't had to be patched.  The only surgery she has had on her head was at 10 weeks of age and they released her coronal sutures and advanced her midface.  Nothing needed to be done to her eyes.

Hope the drops work.  My sister had bad vision in one eye as a child and should have been patched but it was never done, and now as an adult she has to have a very strong lens in one glass of her glasses.  Worth doing now if you can get Jonathan's cooperation.

Goodnight again.
Ann
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Date:         Sat, 27 Feb 1999 23:59:52 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         foster <foster@ICONTECH.COM>
Subject:      Update
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Hello to everyone. Billy came home on Monday and seemed to be doing pretty
good. But, on Thursday he had to go back in. We did find out that the
pancreas was affected by the virus and it took a while for that to heal
enough for him to come home. He picked up a cold while in the hospital which
seemed to get worst when he came home. Come to find out he also picked up
the (Rhoada ? spelling) virus. He has his IV in his head because they can"t
find a good vain and he has pulled it out twice since Thursday. Today his
ears are infected probably from all the tears getting in his ears while they
continue to hold him down for one reason or another. He is taking it all
like a trooper. One of my many concerns is that he has lost so much weight.
He weighed 24lbs today. Its not like he weighed a whole lot to begin with
but, 24lbs is a little hard to take.

Thank you all for your prayers and please continue. His 2nd birthday is on
the 4th of March and it would be great if he could be at home. If he is not
then we will have something at the hospital with him.

Hope all is well with everyone and welcome to all of the new people.

I'll try to update in a few days.

Karen(PA)
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Date:         Sun, 28 Feb 1999 02:51:44 EST
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From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      AOL CHAT ROOM?
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Would anyone on AOL be interested in starting a weekly priviate Apert chat
room.  Maybe at 5 p.m. or 6 p.m. pacific so the Eastern people aren't up too
late?   Almost any night is good for me, maybe if we get a few suggestions
then we can set a day and time and start the next week or so?

Let me know?
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Date:         Sun, 28 Feb 1999 15:45:00 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Birthdays
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        Since I am a little behind, I wanted to wish DARYL GRAHAM and AMY ESLER

                HAPPY BELATED BIRTHDAY!!!!!!!
 

To BILLY FOSTER, HAPPY BIRTHDAY on March 4th.  Hope you can celebrate at home.

Best wishes to all

Janine Krebs
(rainy NY)
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Date:         Sun, 28 Feb 1999 16:10:38 EST
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From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Re: AOL CHAT ROOM?
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I would definetely be interested in a chat room!!!

Sheila [Paige's Mom]
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Date:         Sun, 28 Feb 1999 20:42:17 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: AOL CHAT ROOM?
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Lisa,

Hey there. How is Samantha? Carlee is doing good. She goes in this Wednesday
March 3, for surgery to remove her fingernails that are getting infected. then
once she fully recovers from that she will have her first cranial surgery done
(YIKES!!!) I am also interested in the chat room idea that u had. Let me know
what you decide. By the way what is the time difference from Florida(me) and
California (you)? I think it is 3 hours but I am not sure if it's earlier or
later. Well keep in touch and send more pictures when you get a chance.

Cristy and Carlee
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Date:         Sun, 28 Feb 1999 20:50:50 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Discovery Channel Show
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The show on the discovery channel about Facial plastic surgery was on again
tonite Feb 28 (Sunday) at 7pm Eastern time. I am sorry I didn't check my email
to let you know sooner that it would be on again. my husband couldn't bear to
watch all of it.     and it was all I could do to watch it all. But I figure
it is something that has to be done and I would rather have some idea of what
Carlee will be going through in the near future.  I also ordered the tape
through Health Diary that Stephanie Tingley had given info. on . It is about
Jake Niemi who has Apert syndrome. I've watched it twice so far and cried both
times. To everyone having upcoming surgeries our thoughts and prayers are with
you. Please think of Carlee this Wednesday March 3. She is having her infected
fingernails (type 3 hands) removed, so that when that completely heals they
can do her first cranial surgery. Also, Happy Birthday to all with upcoming B-
days.

Cristy and Carlee
=========================================================================
Date:         Sun, 28 Feb 1999 23:13:11 -0500
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From:         Timothy Holt <tholt@WEBTV.NET>
Subject:      Catching up!
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