Brenda,
Glad to meet you. Seems many of the people here have younger
children.
I too remember going to a support group when Allie was first born and
a
woman with her teenage daughter talked about having 16 surgeries.
I
remember my disbelief. Little did I know Id be there by two years
later. I have read many papers stemming from the Dallas Craniofacial
team. Have heard many good things about them, you are fortunate.
Thanks for compliment, sometimes it doesnt feel that way but deal with
things the best I can, blessed to have a good support system.
Look
forward to being part of the group
Claudia
GSieb91515@AOL.COM wrote:
>
> Claudia-
>
> Welcome to the group. We are the Siebert's from Houston (Brenda,
George,
> Jonathan and Melissa). Jonathan has Aperts and will be 2 on
Dec. 6th. His
> cranial team is in Dallas and his surgeon also studied under Dr.
Tessier. We
> are extremely happy with the results of his last cranial surgery.
You sound
> like you really have it together. When Jonathan was born and
we read stories
> in the newsletters about the number of surgeries these kids would
endure, I
> couldn't believe it. How could a child that young have had
so many? Now I
> understand as we are counting them down. Your Allie has certainly
had her
> share. We hope she continues the year surgery free! I
look forward to
> hearing more from you in the future.
>
> Brenda
> Houston
=========================================================================
Date: Sun, 15 Nov 1998
01:09:14 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Jacob's post-op
Mime-Version: 1.0
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Dear Jenny,
Thanks for the nice email,
I would like to know more about you. So please
email me at my email address which is LSAYLAN@AOL.COM look forward
to hearing
from you soon!
Liz
=========================================================================
Date: Sat, 14 Nov 1998
22:44:38 -0800
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Hello
MIME-Version: 1.0
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Know any good eyelid specialists?
Dear Claudia,
The Torrance Kaiser has two great docs.. Dr.
Tudor and Dr. Feldman who
corrected Roxy's eyelids...they formed a crease in the eyelids to reposition
the eyelashes away from the eye (epiblephzian repair all four eyelids)
and
removed a portion of the overacting muscle from each eye (bilateral
inferior
oblique myectomy). We usually see a wonderful Kaiser pediatric
opthamalogist, Dr. Huffaker, in Riverside. He referred us to
Torrance for
surgery.
We also see Dr. Kawamoto and have nothing
but praise for his work.
Roxanne (10 years old) and Allie are very close in age. You mentioned
you
are looking for the right plastic surgeon...would Dr. Kawamoto be able
to do
the tarsophys release?
Best wishes,
Rose
La Mirada, CA
=========================================================================
Date: Sun, 15 Nov 1998
21:10:51 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Questions
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Kia Ora Rahiza
Greetings and welcome to the Apert Listserver from Ann, Howard and Amy down here in New Zealand. Congratulations on the birth of Atikah. It is always sad when the enjoyment of a successful delivery is marred by the fact that our baby has extra challenges to face in life.
A few observations on your questions:
>1. Recently my daughter was seen by Dr. David David from Australia
(
>visiting doctor to one of the specialist centre in Malaysia).
Dr David David also visits us here in New Zealand to followup NZ patients
he has operated on in past years and to consult with our surgeons.
In the past our children had to go to Adelaide in Australia for their craniofacial
surgery, but we have had our own units for some years now. Dr David
has a lot of experience in this area of surgery and it seems he believes
prevention is better than dealing with problems when they arise.
Our Amy had her coronal sutures released and midface advanced 1.5cm
when she was 10 weeks old - local NZ surgeons.
Not an easy choice for you.
>2. Before meeting Dr. David David we have already scheduled an operation
to
>released Atikah's finger ( type 2) - operation on 25 Nov 98
but Dr. David
>approach is the other way around it should be done later ..
My concern is,
>the earlier it to be done the better so that she can manipulate her
>fingers. Any opinion on this?...
My personal opinion is that release of fingers should be done as early as possible to allow the children to stimulate their brain by use of those fingers, and encourage their exploration of their environment. And I strongly believe it should all be over and done with before they start school. Those first 3-5 years of life are so very important. Amy has rosebuds at birth - no separation - and no surgery was done until she was 15 months old.
>3. Cranial Advancement does it need to be done repeatedly or one is enough?
We had been told Amy would not need more sugery until she stopped growing. However, approaches and procedures have changed and we are now looking at the possibility of it being done again next year when she will be 8 years old. The psychosocial aspects of their development have been shown to improve when surgery is done at this middle-childhood stage - the idea is to get them looking as "normal" as possible before they hit the traumatic and hormone-affected teenage years.
>4. Atikah have a narrow nassal passage due to high arch pallete which
make
>it difficult for her to breath when she's having cold or something
.
Amy also has a high "cathedral" palate but has had no procedures or
operations so I have nothing to offer on this issue.
>Sorry for making it too long
That's not long!! Ask away!
Every best wish
Ann
NZ
=========================================================================
Date: Sun, 15 Nov 1998
14:50:32 EST
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From: BBarn60368@AOL.COM
Subject: Re: Jacob's post-op
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Dear Jenny:
Happy late birthday! I haven't noticed anything from you before.
I did
notice that you are from somewhere in Georgia. Have you noticed
that Liz is
also from Georgia? She was the one whose message you responded
to. Boy what
conversations you two could get into if you got together! I would
love to be
there. I am originally from north Georgia (Rome).
What an inspiration you are to me and hopefully to my daughter, Shirley,
when
she gets older. She is five and has Apert. She is in Kindergarten
and I'm
not real happy about the program she is in. Tell me about your
school days.
Did you go to a public school, private school, Christian school, "special"
school? Did you have a hard time in school? Did you repeat
any grades? Did
you find yourself "flagged and tagged" before given a chance to perform?
Any
input you have would be interesting to me.
Thanks in advance,
Alice in Central Florida.
=========================================================================
Date: Sun, 15 Nov 1998
11:20:43 -0000
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From: magnomd@ALOHA.NET
Subject: Who on the list lives in Ohio?
Mime-Version: 1.0
Content-Type: text/plain; charset="US-ASCII"
Hi!
Just wanted to know who on the listserv lives in the State of Ohio?
I
have some acquaintances who are going to be in Ohio and have a child
with
Apert's. They would like to meet some families and share info.
They are
not on the listserv right now.
Please reply to the list, or to me personally.
Thanks,
Joana Magno, Mar Mar's mom
Honolulu
=========================================================================
Date: Sun, 15 Nov 1998
14:45:21 -0800
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From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Re: Who on the list lives in
Ohio?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Joana,
Do you have your copy of the networking list that I mailed out in June?
There are seven families/individuals in Ohio that have consented to
network. Let me know if you need a copy of that page. I
can fax it to
you.
Take care.
Christine Clark
=========================================================================
Date: Sun, 15 Nov 1998
18:38:34 -0500
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Sender: Information exchange and
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From: The Stroupes
<stroupes@IX.NETCOM.COM>
Subject: Mid-face advance
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0010_01BE10C7.269FDD60"
This is a multi-part message in MIME format.
------=_NextPart_000_0010_01BE10C7.269FDD60
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi All!=20
Judy from NC here. Haven't "chatted" in awhile but always
read the =
messages to see what is going on. I have a 9yr old boy w/ Apert
=
Syndrome. He also has had 25+ surgeries but is doing quite well.
Zach =
is in a regular 4th grade class and recieves OT &PT at school.
School =
is going well -- homework is tough as Zach has very poor organizational
=
skills but he knows the stuff. I was wondering if anybody has
had the =
midface advancement and had to have it redone later. Zach's face
is not =
nearly as involved as his hands but as he has grown, his mid-face has
=
not causing him to lose the bridge of his nose to support his glasses.
=
Hecan still support his glasses but they are on the tip of his nose.
=
His oral max doc has said that we can do the mid-face but that it would
=
have to be redone after he finishes growing. My other question
has to =
do with self esteem. You folks that have had it done at this
age -- did =
it help w/ self-esteem when the peer pressure and hormones kicked in?
I =
would love to hear from all as we are trying to decide what would be
=
best. As usual, Zach doesn't want anything to do w/ it as he
hates =
being put to sleep. Either e-mail me here or at stroupes@ix.netcom.com
=
-- Thanks in advance for your input. Judy Stroupe=20
------=_NextPart_000_0010_01BE10C7.269FDD60
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi All! </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Judy from NC here.
=
Haven't =20
"chatted" in awhile but always read the messages
to see what =
is going=20
on. I have a 9yr old boy w/ Apert Syndrome. He
also has had =
25+=20
surgeries but is doing quite well. Zach is in a regular 4th
grade =
class=20
and recieves OT &PT at school. School is going well
-- =
homework is=20
tough as Zach has very poor organizational skills but he knows the
=
stuff. =20
I was wondering if anybody has had the midface advancement and had
to =
have it=20
redone later. Zach's face is not nearly as involved as his
hands =
but as he=20
has grown, his mid-face has not causing him to lose the bridge of his
=
nose to=20
support his glasses. Hecan still support his glasses but they are on
the =
tip of=20
his nose. His oral max doc has said that we can do the mid-face
=
but that=20
it would have to be redone after he finishes growing. My
other =
question=20
has to do with self esteem. You folks that have had it done
at =
this age --=20
did it help w/ self-esteem when the peer pressure and hormones kicked
=
in? =20
I would love to hear from all as we are trying to decide what would
be=20
best. As usual, Zach doesn't want anything to do w/ it as
he hates =
being=20
put to sleep. Either e-mail me here or at <A=20
href=3D"mailto:stroupes@ix.netcom.com">stroupes@ix.netcom.com</A>
-- =
Thanks in=20
advance for your input. Judy Stroupe </FONT></DIV></BODY></HTML>
------=_NextPart_000_0010_01BE10C7.269FDD60--
=========================================================================
Date: Sun, 15 Nov 1998
20:24:00 EST
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From: NephiRose@AOL.COM
Subject: Re: "Welcome to Holland"
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Yes, I have read that story/analogy. I like it too.
Even though being
pregnant and knowing my child had aperts and the shock after the birth
has all
been somewhat of an "adjustment" to put it mildly, I wouldn't trade
Sarah V.
for all the "perfect" children in the world. Every little improvement
or new
frontier she explores, I take extra delight in. I just wished
I did the same
with my other children, whom I had taken for granted. So off
we go onto this
new land :)....
Belinda Vicars
(Utah)
p.s. no, I do not have to travel far for Sarah's surgeries.
It is only about
an hour from our home, including traffic.
=========================================================================
Date: Sun, 15 Nov 1998
21:21:55 -0800
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Hello
MIME-Version: 1.0
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Rose,
Thanks Rose so much for the info. I think they would only refer
out to
Dr. Kawamoto if there isnt a Kaiser Dr. to do it. I dont think Dr.
Wexler has done that many tarsophy releases. We also have a great
opthamologist Dr. Clorfeine, but he has not done this type of surgery.
I think it is more suited to a plastic surgeon. What do you think?
On
one side she doesnt have eyelashes on the ends because they had to
do
that side twice and the second time they really sewed it together.
I
wonder if they can fix that. Its not that big of a deal to us, but
it
might be for Allie as she gets a little older. Why did they form
a
crease? Do you go to the Kaiser craniofacial clinic? Has
Dr. Kawamoto
done any surgeries for your daughter? I have great admiration for Dr.
Kawamoto, very skilled. Has Roxy had the LeFort advancement yet?
This
is great because they are close enough. I will ask Dr. Clorfeine
if he
knows them. Not ready to do it yet tho. How is Roxy
doing in school
socially? Things have been good so far for us, but I wonder as
she gets
older into middle and high school....
Joseph Chan wrote:
>
> Know any good eyelid specialists?
>
> Dear Claudia,
> The Torrance Kaiser has two great docs..
Dr. Tudor and Dr. Feldman who
> corrected Roxy's eyelids...they formed a crease in the eyelids to
reposition
> the eyelashes away from the eye (epiblephzian repair all four eyelids)
and
> removed a portion of the overacting muscle from each eye (bilateral
inferior
> oblique myectomy). We usually see a wonderful Kaiser pediatric
> opthamalogist, Dr. Huffaker, in Riverside. He referred us to
Torrance for
> surgery.
> We also see Dr. Kawamoto and have nothing
but praise for his work.
> Roxanne (10 years old) and Allie are very close in age. You
mentioned you
> are looking for the right plastic surgeon...would Dr. Kawamoto be
able to do
> the tarsophys release?
>
> Best wishes,
> Rose
> La Mirada, CA
=========================================================================
Date: Mon, 16 Nov 1998
08:31:35 -0500
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From: Doug Lee <DOUGLEE@JWHOMES.COM>
Subject: Re: Jacob's post-op
MIME-Version: 1.0
Content-Type: text/plain
Happy Birthday Liz.
-----Original Message-----
From: Liz Saylan [mailto:LSaylan@AOL.COM]
Sent: Saturday, November 14, 1998 9:31 AM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Jacob's post-op
hey I forgot to send my attachment with that letter here it is a picture
of
Liz Saylan.
I will be 30 years old on
Monday!
=========================================================================
Date: Mon, 16 Nov 1998
08:33:34 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Asking for help
Comments: To: Trlek Tvrtko <ttrlek@cp-varazdin.tel.hr>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-2"
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Hi - I am forwarding your letter to all the teachers, therapists,
parents, and adults on our listserv - folks, please reply directly
to
Elizabeta, as they are not subscribed to the listserv. Thanks
in
advance for your help!!!
> -----Original Message-----
> From: Trlek Tvrtko [SMTP:ttrlek@cp-varazdin.tel.hr]
> Sent: Monday, November 16, 1998 8:16 AM
> To: catndon@apert.org
> Subject: Asking for help
>
> Hi !
>
> My name is Elizabeta Trlek and I am from
Croatia.I have degree
> in defctology and I am working with one kid with Apert syndrome.
> His name is Dorian and he is 7.He had some operations on his skull
and
> hands, but his brain is damaged.He knows only 6-9 words, and can
> concentrate 20 - 30 seconds.His parents didn't work with him and
he is
> in bad shape.
> That kind of syndrome is rear here in Croatia,
and therefore it is
> hard to find any literature or profesonal help. I managed to find
just
> a few articles and few URL's
> about that subject.
> Please if there is any kind of help you can
give me to make
> programs and lessons for Dorian. He needs to learn so much and I
have
> just a few ideas how to help him.
>
> Sorry about my English, but I am mostly reading it, so my wrteing
is
> little rusty.
>
> Thanks !!
>
> E.T.
>
> My address: (my housband's address at work)
>
>
Tvrtko Trlek
>
HPT CP Varazdin
>
HR 42000 Varazdin
>
>
=========================================================================
Date: Mon, 16 Nov 1998
08:47:59 EST
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From: BBarn60368@AOL.COM
Subject: Happy Birthday
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Happy Birthday Liz!!!! Hope you have a wonderful day!
Alice in Central Florida
=========================================================================
Date: Mon, 16 Nov 1998
21:14:31 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello family!
Once again I would like to ask for your prayers. I have been getting
sick
after almost every meal with sharp stomach pains and then the ejection
from both ends. My family has a history of stomach problems,
one I
thought I relinquished when my gall bladder came out. Apparently
there's
more to this. I have started a journal of my diet which I will
present
to my doctor on Monday. Hopefully there's a simple solution,
without
being sentenced to taking drugs for the rest of my life like my dad
is.
Hope all is well where you are.
Joanne
=========================================================================
Date: Mon, 16 Nov 1998
23:07:17 EST
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From: Nodrmat26@AOL.COM
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Joanne~
I'm sorry to hear about the pain that you're going through. I
hope the
doctors have good news. I'll be thinking about you (and praying
too).
Take care.
Christina
=========================================================================
Date: Mon, 16 Nov 1998
23:35:33 -0800
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Chit chat
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Dear Claudia,
>I think they would only refer out to Dr. Kawamoto if there isnt a Kaiser
Dr. to do it. I dont think Dr. Wexler has done that many tarsophy releases.
We also have a great opthamologist Dr. Clorfeine, but he has not done
this
type of surgery.I think it is more suited to a plastic surgeon. What
do you
think?
...I think if Dr. Kawamoto started the job, he should finish it.
He is a
great plastic surgeon. You can insist on this with Kaiser. The
craniofacial
team will agree and give you the necessary authorization.
>On one side she doesnt have eyelashes on the ends because they had
to do
that side twice and the second time they really sewed it together.
I wonder
if they can fix that. Its not that big of a deal to us, but it might
be for
Allie as she gets a little older. Why did they form a crease?
...Good question to ask the experts.
>Do you go to the Kaiser craniofacial clinic?
...Yes, in West L.A.
>Has Dr. Kawamoto done any surgeries for your daughter?
...yes, one at 3 months, which was aborted after Roxy scared all the
docs by
going into cardiac arrest after the anesthesia was given. All
tests
afterwards came back "normal." "Some fluke," they said!
So we tried again at 5 months and the frontal orbital advancement
with
bilateral coronal synostosis releases was successful. Thank goodness!
At 7 years old Roxy had her mid-face advancement. All
this was done by
Dr. Kawamoto.
>How is Roxy doing in school socially?
...I hear she is doing well. This is her first year in a regular
4th grade class. She gained some popularity when she was awarded
"Student
of the Month" in the area of "friendliness."
On the other hand, her class pairs up "reading buddies" with the
kindergarteners. Initially, the little 5-year-olds were afraid
to be with
Roxy. I wish someone would have prepared them. But she
lived through it
and now she would rather skip speech therapy just to go read to her
little
buddy. Sometimes, there are "meanies" are on the playground,
from some
other class. She tells me she just ignores and walks away.
>Things have been good so far for us, but I wonder as she gets older
into
middle and high school....
I am glad things have been good for you. Have faith and believe
that things
will only get better for her as she grows older. We'll do everything
within
our power as parents to help our kids along, right? The rest
is up to God.
Warmly,
Rose
La Mirada, CA
=========================================================================
Date: Tue, 17 Nov 1998
09:41:27 -0600
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Fw: Mom's Dictionary
MIME-Version: 1.0
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-----Original Message-----
Date: Sunday, November 15, 1998 5:56 PM
Subject: Fw: Mom's Dictionary
>
> >
>
>Mom's COMPLETE Dictionary:
>
>AIRPLANE: What Mom impersonates to get a 1-yr.-old to eat strained
beets.
>
>ALIEN: What Mom would suspect had invaded her house if she spotted
a child-
>sized creature cleaning up after itself.
>
>APPLE: Nutritious lunch-time dessert which children will trade for
>cupcakes.
>
>BABY: 1) Dad, when he gets a cold. 2) Mom's youngest child, even if
he's
>42.
>
>BATHROOM: a room used by the entire family, believed by all (except
Mom) to
>be self-cleaning.
>
>"BECAUSE": Mom's reason for having kids do things which can't be explained
>logically.
>
>BED AND BREAKFAST: Two things the kids will never make for themselves.
>
>CARPET: Expensive floor covering used to catch spills and clean mud
off
>shoes.
>
>CAR POOL: Complicated system of transportation where Mom always winds
up
>going the furthest, with the biggest bunch of kids, who have had the
most
>sugar.
>
>CHINA: Legendary nation reportedly populated by children who love
leftover
>vegetables.
>
>COOK: 1) Act of preparing food for consumption. 2) Mom's other name.
>
>COUCH POTATO: What Mom finds under the sofa cushions after the kids
eat
>dinner.
>
>DATE: Infrequent outings with Dad where Mom can enjoy worrying about
the
>kids in a different setting.
>
>DRINKING GLASS: Any carton or bottle left open in the fridge.
>
>DUST: Insidious interloping particles of evil that turn a home into
a
>battle zone.
>
>DUST RAGS: See "DAD'S UNDERWEAR."
>
>EAR: A place where kids store dirt.
>
>EAT: What kids do between meals, but not at them.
>
>EMPTY NEST: See "WISHFUL THINKING."
>
>ENERGY: Element of vitality kids always have an oversupply of until
asked
>to do something.
>
>"EXCUSE ME": One of Mom's favorite phrases, reportedly used in past
times
>by children.
>
>EYE: The highly susceptible optic nerve which, according to Mom, can
be
>"put out" by anything from a suction-arrow to a carelessly handled
butter
>knife.
>
>FABLE: A story told by a teenager arriving home after curfew.
>
>FOOD: The response Mom usually gives in answer to the question "What's
for
>dinner tonight?" See "SARCASM"
>
>FROZEN: 1) A type of food. 2) How hell will be like when Mom lets
her
>daughter date an older guy with a motorcycle.
>
>GARBAGE: A collection of refuse items, the taking out of which Mom
assigns
>to a different family member each week, then winds up doing herself.
>
>GENIUSES: Amazingly, all of Mom's kids.
>
>GUM: Adhesive for the hair.
>
>HAMPER: A wicker container with a lid, usually surrounded by, but
not
>containing, dirty clothing.
>
>HANDI-WIPES: Pants, shirt-sleeves, drapes, etc.
>
>HANDS: Body appendages which must be scrubbed raw with volcanic soap
and
>sterilized in boiling water immediately prior to consumption of the
evening
>meal.
>
>HINDSIGHT: What Mom experiences from changing too many diapers.
>
>HOMEMADE BREAD: An object of fiction like the Fountain of Youth and
the
>Golden Fleece.
>
>ICE: Cubes of frozen water which would be found in small plastic tray
if
>kids or husbands ever filled the darn things instead of putting them
back
in
>the freezer empty.
>
>INSIDE: That place that will suddenly look attractive to kids once
Mom has
>spent a minimum of half an hour getting them ready to go outside.
>
>"I SAID SO": Reason enough, according to Mom.
>
>JACKPOT: When all the kids stay at friends' homes for the night.
>
>JEANS: Which, according to kids, are appropriate for just about any
>occasion, including church and funerals.
>
>JOY RIDE: Going somewhere without the kids.
>
>JUNK: Dad's stuff.
>
>KETCHUP: The sea of tomato-based goop kids use to drown the dish that
Mom
>spent hours cooking and years perfecting to get the seasoning just
right.
>
>KISS: Mom medicine.
>
>LAKE: Large body of water into which a kid will jump should his friends
do
>so.
>
>LEMONADE STAND: Complicated business venture where Mom buys powdered
mix,
>sugar, lemons, and paper cups, and sets up a table, chairs, pitchers
and
ice
>for kids who sit there for three to six minutes and net a profit of
15
>cents.
>
>LIE: An "exaggeration" Mom uses to transform her child's papier-mache
>volcano science project into a Nobel Prize-winning experiment and
a
>full-ride
>scholarship to Harvard.
>
>LOSERS: See "Kids' Friends"
>
>MAKEUP: Lipstick, eyeliner, blush, etc. which ironically make Mom
look
>better while making her young daughter look "cheap."
>
>MAYBE: No.
>
>MILK: A healthful beverage which kids will gladly drink once it's
turned
>into junk food by the addition of sugar and cocoa.
>
>"MOMMMMMMM!": The cry of a child on another floor who wants something.
>
>MUSH: 1) What a kid loves to do with a plateful of food. 2) Main element
of
>Mom's favorite movies.
>
>NAILS: A hard covering on the end of the finger, which Mom can never
have a
>full set of due to pitching for batting practice, opening stubborn
modeling
>clay lids and removing heat ducts to retrieve army men and/or doll
clothing.
>
>PANIC: What a mother goes through when the darn wind-up swing stops.
>
>OCEAN: What the bathroom floor looks like after bath night for kids,
>assorted pets, two or three full-sized towels and several dozen toy
boats,
>cars and animals.
>
>OPEN: The position of children's mouths when they eat in front of
company.
>
>OVERSTUFFED RECLINER: Mom's nickname for Dad.
>
>PENITENTIARY: Where children who don't eat their vegetables or clean
their
>rooms eventually end up, according to Mom.
>
>PETS: Small, furry creatures which follow kids home so Mom will have
>someone else to clean up after.
>
>PIANO: A large, expensive musical instrument which, after thousands
of
>dollars worth of lessons and constant harping by Mom, kids will refuse
to
>play
>in front of company.
>
>PURSE: A handbag in which Mom carries the checkbook and keys she can
never
>
>find because they're buried under tissues, gum wrappers, a plastic
container
>full of cereal, toys from a fast-food restaurant, a teddy bear, a
football,
>wallpaper samples, a grocery list and several outdated coupons.
>
>QUIET: A state of household serenity which occurs before the birth
of the
>first child and occurs again after the last child has left for college.
>
>RAINCOAT: Article of clothing Mom bought to keep a child dry and warm,
>rendered ineffective because it's in the bottom of a locker stuffed
in a
>book
>bag or because the child refuses to wear "the geeky thing."
>
>REFRIGERATOR: Combination art gallery and air-conditioner for the
kitchen.
>
>ROOM MOTHER: A position of great honor and responsibility bestowed
on a mom
>who inadvertently misses a PTA meeting.
>
>SCHOOL PLAY: Sadistic ritual in which adults derive pleasure from
watching
>offspring stumble through coarse reenactments of famous historic events.
>
>SCREAMING: Home P.A. system.
>
>SNOWSUITS: Warm, padded outer garments that, when completely zipped
and
>snapped performs two important functions: Protecting children from
the cold
>and reminding them that they have to go to the bathroom.
>
>SOAP: A cleaning agent Mom puts on the sink on the off-chance one
of her
>kids will accidentally grab it while reaching for the towel.
>
>SPIT: All-purpose cleaning fluid especially good on kids' faces.
>
>SPOILED ROTTEN: What the kids become after as little as 15 minutes
with
>Grandma.
>
>SWEATER: Magically charmed article of clothing that can ward away
colds,
>flu and even pneumonia.
>
>SUNDAY BEST: Attractive, expensive children's clothing made of a fabric
>which attracts melted chocolate and grape juice.
>
>TEACHER CONFERENCE: A meeting between Mom and that person who has
yet to
>understand her child's "special needs."
>
>TERRIBLE TWO'S: Having both kids at home all summer.
>
>"THAT WAY": How kids shouldn't look at moms if they know what's good
for
>them. Also applies to how they talk.
>
>TOWELS: See "FLOOR COVERINGS"
>
>TROUBLE: Area of nonspecific space a child can always be sure to be
in.
>
>UMPTEENTH: Highly conservative estimate of the number of times Mom
must
>instruct her offspring to do something before it actually gets done.
>
>UNDERWEAR: An article of clothing, the cleanliness of which ensures
the
>wearer will never have an accident.
>
>UTOPIA: See "BUBBLE BATH"
>
>VACATION: Where you take the family to get away from it all, only
to find
>it there, too.
>
>VITAMINS: Tiny facsimiles of cave people Mom forces you to swallow
each
>morning as part of her sinister plot to have you grow up to be "Just
like
>Daddy."
>
>WALLS: Complete set of drawing paper for kids that comes with every
room.
>
>WASHING MACHINE: Household appliance used to clean blue jeans, permanent
>ink markers, loose change, homework, tissues and wads of gum.
>
>"WHEN YOUR FATHER GETS HOME": Standard measurement of time between
crime
>and punishment.
>
>XOXOXOXO: Mom salutation guaranteed to make the already embarrassing
note
>in a kid's lunch box even more mortifying.
>
>XYLOPHONE: Small toy musical instrument often given as gifts to children
>who show their appreciation by playing the stupid thing constantly,
over
and
>over, all day long! See also "DRUMS"
>
>YARD SALE: Heart-wrenching emotional process wherein Mom plans to
sell
>kid's outdated toys and clothing that she decides at the last minute
are
>treasured mementos she can't bear to part with.
>
>"YIPPEE!": What Mom would jump up and shout if the school year was
changed
>to 12 months. See also "YAHOO!"
>
>ZILLION: Amount of times Mom must have gone to the supermarket already
this
>week.
>
>ZUCCHINI: Vegetable which can be baked, boiled, fried or steamed before
>kids refuse to eat it.
>
>That Boy Aint Right
>
>The doctors said I am in good enough shape to return a semi-normal
life
>again as long as I take my meds. The voices in my head should tone
down a
>bit then. You have no idea what it is like in there sometimes.
>
>Download NeoPlanet!
>
>
=========================================================================
Date: Tue, 17 Nov 1998
12:40:03 -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: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Joanne: Best wishes: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good afternoon, Joanne:
So sorry to hear about your
painful stomach. You are in
my prayers and you have all
my good wishes.
All the best,
Scott
=========================================================================
Date: Tue, 17 Nov 1998
22:28:52 -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: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Adjusting to School
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Rose,
Thanks for the responses, What a scare!!! with your first surgery.
We
almost lost our Allie post op after her last midface. Her blood
pressure dropped dangerously low, but thank god the nurses were on
top
of things and they gave her about 5-6 emergency boluses sp?(push of
iv
fluids)then of course, she blew up like a balloon, I dont think her
skin
could of stretched any further. She was so swollen. We
never leave her
alone in the hospital, family members take turns... So you probably
know
some of the same nurses from the pediatric ICU at Sunset Kaiser?? or
were you at West LA. We insisted on Sunset because they have the PICU.
I
am sure glad we did, a regular peds unit would not have been prepared
to
deal with her type of emergency that she did have. They were
a fabulous
team of nurses, Especially the post op nurses. We have experienced
our
share of surgeries and have never observed better team work than we
saw
at Sunset recovery/post op. Did have one nurse who wasnt up to
par in
the unit, but just requested that he not care for our daughter anymore.
Not a problem for me to speak up when it comes to her care. First
lesson you learn is that you are the best advocate for your child.
Im sure you are right about Dr. Kawamoto doing the tarsophy, just not
ready to pursue it yet.
With Allie,and school I believe it really helped that I gave little
talks in the classes. Just about everyone knows her and they dont even
think twice about her appearance or treat her differently. She
has been
in the same school since Kindergarten which I believe really helps.
What type of class setting was Roxy in prior to 4th grade? Thats
a
really cute name, Roxy. Well I better close, nice to hear from you
again!
Thanks,
Claudia
=========================================================================
Date: Wed, 18 Nov 1998
06:10:44 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: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: question?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hey Everyone!
First I want to go ahead
and wish everyone a Happy Thanksgiving! I hope you
all have a wonderful holiday. I am curious to know if anybody got my
picture
that I had attached to an email last week, I haven't heard anything
from any
of you. I was wondering if you did and just haven't had a chance to
respond to
my email yet or if you did not get to download my picture. Jenny please
email
me with some more information about you, I would like to get to know
you more!
Take Care everyone!
Liz Saylan
=========================================================================
Date: Wed, 18 Nov 1998
10:32:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
-----Original Message-----
From: Liz Saylan <LSaylan@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, November 18, 1998 6:10 AM
Subject: Re: question?
>Hey Everyone!
> First I want to go ahead
and wish everyone a Happy Thanksgiving! I
hope you
>all have a wonderful holiday. I am curious to know if anybody got
my
picture
>that I had attached to an email last week, I haven't heard anything
from
any
>of you. I was wondering if you did and just haven't had a chance to
respond
to
>my email yet or if you did not get to download my picture. Jenny please
email
>me with some more information about you, I would like to get to know
you
more!
> Take Care everyone!
>
Liz Saylan
Liz,
Sorry to say, but I did not receive the e-mail. I don't know about
anyone
else. Please e-mail it again and I will let you know if I receive
it.
Lynn>
=========================================================================
Date: Wed, 18 Nov 1998
11:06:18 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: Yonstein@AOL.COM
Subject: Re: Chit chat - my Houdini
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello All:
First of all, it's been a couple of days since I've written so I hope
I don't
forget anyone.
Joanne, glad to hear the good news about your tests. Sorry to
hear about your
stomach problems. Hopefully it's just a virus that is going around.
Welcome to Allie and Claudia and family. Glad to have you join
the list.
It's a great place, as I am sure you have already found out.
To Jake, Jordan, Nicole and any of the other kids recovering, hope you
are all
coming along and healing nicely.
To all of you, thank you for responding to my surgery letdown.
I will say
that things are finally starting to look up. Since I last wrote,
Emily had
her stomach virus, which then turned into a double ear infection.
My son
Nicholas (4 and a half) developed a mild case of the stomach virus
as well.
Then my Houdini managed to take her cast off on Monday (less than two
weeks
after surgery). Fortunately, when we took her back to the doctor,
he said it
looked good and only bandaged it and didn't have to put another cast
on.
However, this morning she had taken the bandage off and I had to bandage
it
for the first time.
As to seeing the hand after the surgery(this is our first) I totally
agree.
It didn't look anything like I expected. Although our surgeon
just separated
the bones at the tips and didn't do a complete digit separation.
What I saw
was dried blood and the stitches in between. He was very pleased
with the way
it looked, though. The best news was that he said he will be
able to get all
five fingers on her hand.
Well, I hope I haven't forgotten anyone. My apologies if I did.
Oh, Happy Birthday to Liz!!
Best wishes,
JANINE KREBS
=========================================================================
Date: Wed, 18 Nov 1998
12:25:37 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: question?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Liz: Sorry but your bmp file couldn't be downloaded by my machine.
It
jammed up and I had to call support and have them delete the bmp file
because al my other mail was backed upbehind it. I can read jpg
tho; they
come across just fine. But bmp cratered at this end.
;-)
Pat
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity. HD Thoreau
Civil Disobedience
=========================================================================
Date: Wed, 18 Nov 1998
11:47:40 -0600
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
I didn't receive the email with attachment either...
-----Original Message-----
From: Richard Thornquist <rlthorn@EARTHLINK.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, November 18, 1998 9:32 AM
Subject: Re: question?
>-----Original Message-----
>From: Liz Saylan <LSaylan@AOL.COM>
>To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
>Date: Wednesday, November 18, 1998 6:10 AM
>Subject: Re: question?
>
>
>>Hey Everyone!
>> First I want to go ahead
and wish everyone a Happy Thanksgiving! I
>hope you
>>all have a wonderful holiday. I am curious to know if anybody got
my
>picture
>>that I had attached to an email last week, I haven't heard anything
from
>any
>>of you. I was wondering if you did and just haven't had a chance
to
respond
>to
>>my email yet or if you did not get to download my picture. Jenny
please
>email
>>me with some more information about you, I would like to get to know
you
>more!
>> Take Care everyone!
>>
Liz Saylan
>
>
>
>Liz,
>
>Sorry to say, but I did not receive the e-mail. I don't know
about anyone
>else. Please e-mail it again and I will let you know if I receive
it.
>
>Lynn>
>
=========================================================================
Date: Wed, 18 Nov 1998
15:07:38 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: HAROLD E TYRE
<HETSRT@PRODIGY.NET>
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Liz, This is Carmen Rae's grandmother, Sherry.
We enjoyed getting
your picture. Looks like you were at Six Flags. I hope
to get to meet you
sometime since I go to see our granddaughter in Newnan often.
We live in
Augusta, Ga. Carmen Rae is here staying with us while Robin and
Mike are
at a conference in North Carolina. They will be back today (they
left Sun
from here) I have really enjoyed having Carmen all to myself
all day for
three days. Of course I have to share her with her Grandpa evenings.
I
have enjoyed hearing about you on the listserve and am glad you want
to
help others with Apert Syndrome. Sounds like you have done well
and can be
a help as well as an insperation to others. Take care.
Sherry Tyre
----------
> From: Liz Saylan <LSaylan@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: question?
> Date: Wednesday, November 18, 1998 6:10 AM
>
> Hey Everyone!
> First I want to go
ahead and wish everyone a Happy Thanksgiving!
I hope you
> all have a wonderful holiday. I am curious to know if anybody got
my
picture
> that I had attached to an email last week, I haven't heard anything
from
any
> of you. I was wondering if you did and just haven't had a chance
to
respond to
> my email yet or if you did not get to download my picture. Jenny
please
email
> me with some more information about you, I would like to get to know
you
more!
> Take Care everyone!
>
Liz Saylan
=========================================================================
Date: Wed, 18 Nov 1998
13:47:09 -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: [Fwd: Fwd: [Fwd: FW: (Fwd) Re:
FW: please please read this...
(fwd)-Forwarded]]
MIME-Version: 1.0
=========================================================================
Date: Wed, 18 Nov 1998
17:02:38 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: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: question?
Mime-Version: 1.0
Content-type: multipart/mixed; boundary="part0_911426558_boundary"
This is a multi-part message in MIME format.
--part0_911426558_boundary
Content-ID: <0_911426558@inet_out.mail.aol.com.1>
Content-type: text/plain; charset=US-ASCII
Hi this is Liz I am sending a picture of myself in attachment, there
will be
more soon ! I am gathering pictures to send to don for my own page
and story.
So until I get it all together here is a year old picture and most
recently
taken of me at six flags over Georgia. Please let me know if you are
not able
to download the picture.
Thanks,
Liz Saylan
=========================================================================
Date: Wed, 18 Nov 1998
17:33:35 EST
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Re: question?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Yes, Liz, I had no problem downloading your picture. You are beautiful
!! and
as stated before, an inspiration to us all. Thanks for sending
that one and
please send more.
Alice in Central Florida where it's still 85 degrees!
=========================================================================
Date: Wed, 18 Nov 1998
17:40:06 EST
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: question?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Thank you alice and sherry for letting me know you got it! I don't know
how to
send it in jpg. I will try to get the rest of my pictures together
real soon.
Until then I hope everyone is doing well. I am for the most part except
I have
no self control on the time I spend on the computer and I need to do
so ! I
haven't been getting enough sleep. mainly because I have found some
new
friends I like chatting with every night.
I will write again soon!
Love,
Liz
=========================================================================
Date: Wed, 18 Nov 1998
21:01:59 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marilyn Williams
<marpratt@BELLSOUTH.NET>
Subject: note
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
HI Everyone, my name is Marilyn and I have agranddaughter born June
4,1998 with aperts and just got on line and enjoy the information I
get
for this apert exchange. Is anyone from Northeast Fl.? I live about
50
miles from Jacksonville and my son and family live in Orange park and
would like to meet other families in the area who have a child with
aperts. Carlee had her first hand surgery Oct. 8 to release her thumbs,
she did well but she has had trouble with infection where her nails
are
growing in to the flesh . has anyone had this problem and what did
your
dr. do for it? thanks for listening I write again.Marilyn
=========================================================================
Date: Wed, 18 Nov 1998
18:22:59 -0800
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Liz,
Looks like you were having a good time at six flags.... This world
wide
web can be addicting...Have fun!
Claudia Salazar
San Diego
Liz Saylan wrote:
>
> Thank you alice and sherry for letting me know you got it! I don't
know how to
> send it in jpg. I will try to get the rest of my pictures together
real soon.
> Until then I hope everyone is doing well. I am for the most part
except I have
> no self control on the time I spend on the computer and I need to
do so ! I
> haven't been getting enough sleep. mainly because I have found some
new
> friends I like chatting with every night.
> I will write again soon!
>
Love,
>
>
Liz
=========================================================================
Date: Wed, 18 Nov 1998
18:54:45 -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: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: note
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Welcome Marilyn,
I just joined this past week and the members are very willing to help.
My daughter has Pfeiffers which is a different type of craniosynotosis
syndrome. She is eight years old and had her fair share of surgeries.
Her hands are not involved. Wish I could help but have no experience
with that type of surgery. Best wishes for your granddaughter.
Claudia, and Allie Salazar
Marilyn Williams wrote:
>
> HI Everyone, my name is Marilyn and I have agranddaughter born June
> 4,1998 with aperts and just got on line and enjoy the information
I get
> for this apert exchange. Is anyone from Northeast Fl.? I live about
50
> miles from Jacksonville and my son and family live in Orange park
and
> would like to meet other families in the area who have a child with
> aperts. Carlee had her first hand surgery Oct. 8 to release her thumbs,
> she did well but she has had trouble with infection where her nails
are
> growing in to the flesh . has anyone had this problem and what did
your
> dr. do for it? thanks for listening I write again.Marilyn
=========================================================================
Date: Wed, 18 Nov 1998
22:28:16 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: question?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Liz!
For some reason, I wasn't able to access your picture. It may
be my computer,
I haven't been able to access a few pictures I've gotten lately.
Christina
San Antonio
Nodrmat26@aol.com
=========================================================================
Date: Wed, 18 Nov 1998
23:17:03 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: NephiRose@AOL.COM
Subject: Re: TRAVEL OUT OF STATE
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello all...
Still bent on doing some research on the "best" doctor through out the
nation.
Got quite a few referrals before. I'm impressed. However, just
out of
curiousity...
How many of you travel out of state for medical care for your
child for
his/her craniofacial or hand surgeries? If you do so, would you
mind e-
mailing me that you do and who you go to? I am contemplating
the idea of
traveling outside of Utah to just that, but I need some idea of the
pros and
cons here. Thanks
Belinda
=========================================================================
Date: Wed, 18 Nov 1998
21:33:33 -1000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I find it very difficult and frustrating to download some
picture
files that are in a format that takes up a tremendous amount of memory,
and then not possible to open once downloaded.
Could we please try to send compressed files somehow that are in an
easier format to share?
Thanks,
Joana
=========================================================================
Date: Thu, 19 Nov 1998
09:41:50 -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: George Starr
<daystar@IGLOU.COM>
Subject: Liz's Picture in jpg format
MIME-Version: 1.0
Content-Type: multipart/mixed;
boundary="----=_NextPart_000_002F_01BE13A0.D59BB880"
This is a multi-part message in MIME format.
------=_NextPart_000_002F_01BE13A0.D59BB880
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Smaller, and same quality (to my eyes at least) Hope you all get this
one.
Should be better. Hope Liz Doesn't mind I changed the format and reposted.
the other file was over 1.6 mb this one is only 88k which = .088 mb
Later,
George
=========================================================================
Date: Thu, 19 Nov 1998
09:57:55 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Pictures through the listserv:
new rule
MIME-Version: 1.0
Content-Type: text/plain
I think that Joana has a valid point. Our listserv is made up
of many
different people, all of whom have different connection speeds,
equipment, and needs. I know that there are some email programs
which
do not give you a choice as to whether you want to download attached
files - you must let them come through in the order they are sent to
get
the rest of your mail.
Here's what I will propose: For those of you with pictures to
share,
instead of sending them through the listserv, send them directly to
me
here at catndon@apert.org and I will post them to a very special place
-
we'll call it the ClubHouse. I'll then let you know when the
pictures
are available, and you can make your announcement on the listserv.
I
will make this page today and put out some of the more recent pictures
posted to the listserv. As I get time, I will move these from
the
ClubHouse to the person's own home page.
I know I am behind on some of the kid's pages, and intend to focus on
that too. The web address will be:
http://www.apert.org/clubhouse
and I will be working on it this morning. I hope this is a solution
that makes everyone happy, and speeds along our main listserv goal
of
easy and open communication between all of us.
Love to you all,
Don
=========================================================================
Date: Wed, 18 Nov 1998
15:23:25 -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: Doug Lee <DOUGLEE@JWHOMES.COM>
Subject: Re: question?
MIME-Version: 1.0
Content-Type: text/plain
I got your picture Liz. I'm not computer savvy enough to know
why it
worked for me and not others.
Doug Lee
-----Original Message-----
From: Liz Saylan [mailto:LSaylan@AOL.COM]
Sent: Wednesday, November 18, 1998 6:11 AM
To: APERT@LISTSERV.AOL.COM
Subject: Re: question?
Hey Everyone!
First I want to go ahead
and wish everyone a Happy Thanksgiving!
I hope you
all have a wonderful holiday. I am curious to know if anybody got my
picture
that I had attached to an email last week, I haven't heard anything
from
any
of you. I was wondering if you did and just haven't had a chance to
respond to
my email yet or if you did not get to download my picture. Jenny please
email
me with some more information about you, I would like to get to know
you
more!
Take Care everyone!
Liz Saylan
=========================================================================
Date: Thu, 19 Nov 1998
12:54:22 -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: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: The ClubHouse is now open!!!!
MIME-Version: 1.0
Content-Type: text/plain
Check out the latest greatest photos at http://www.apert.org/clubhouse
=========================================================================
Date: Thu, 19 Nov 1998
15:05:04 -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: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Thanksgiving
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
HOW TO OBSERVE THANKSGIVING
Count your blessings instead of your crosses;
Count your gains instead of your losses.
Count your joys instead of your woes;
Count your friends instead of your foes.
Count your smiles instead of your tears;
Count your courage instead of your fears.
Count your full years instead of your lean;
Count your kind deeds instead of your mean.
Count your health instead of your wealth;
Count on God instead of yourself.
=========================================================================
Date: Thu, 19 Nov 1998
13:57:09 -00800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Liz <LSAYLAN@AOL.COM>
Subject: Turkey Dance for All My Friends
Their Family - from Liz
Guess what!! You have just received an animated greeting card from Liz
You can pick up your personal greeting by connecting to the following
WWW Address
<A HREF="http://www.bluemountain.com/cards/box3762z/nmv7ykdmmevjzn.htm">http://www.bluemountain.com/cards/box3762z/nmv7ykdmmevjzn.htm</A>
(Your greeting card will be available for the next 60 days)
This service is FREE! :) HAVE a good day and have fun!
____________________________________________________________
Accessing your card indicates your agreement with our Website Rules
posted at the bottom of the following Web location: (You're welcome
to send a
free card to someone at this location) http://www.bluemountain.com
=========================================================================
Date: Sat, 19 Sep 1998
05:49:16 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: note
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Marilyn,
My name is Andrea Gartner. I am a 20 yr old with Apert Syndrome.
I'm in
FL too. I live in Cape Coral (near Fort Myers). Im glad
you joined the
list. The people on here are great. I know theres others
around FL as
well. You can find more about me on Teeter's Page (www.apert.org).
I
changed my major to Psychology. If you have any questions, I'll
be more
than happy to answer them.
Best Wishes,
Andrea Gartner
agartner@peganet.com
=========================================================================
Date: Thu, 19 Nov 1998
18:12:21 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: BBarn60368@AOL.COM
Subject: Re: note
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Marilyn:
Welcome to the group. My name is Alice and my daughter, Shirley,
has Apert.
She is 5 and we live in Lake Mary, Florida (just north of Orlando).
Should
your son and family ever get over this way we would love to meet them.
Shirley has not had the nail problem. Sometimes hers look as
if they are
growing into her skin, but she has not had the infection.
Alice in Central Florida
=========================================================================
Date: Thu, 19 Nov 1998
19:09:05 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: WCMurph@AOL.COM
Subject: Surgery Question
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello to all,
Our son, Sammy, is almost 11 months old now and hasn't had a cranial
surgery,
yet. His doctors say that he is progressing "normally" and there
is no need
for surgery just yet as he hasn't shown any signs of inter-cranial
pressure.
In fact, they are overwhelmed by how well he has done up to now.
Sammy has
met all the "normal kid" milestones so far, so we're not too concerned
about
retardation. My wife and I were just curious to find out if anyone
else has
delayed their kid's cranial surgery this long. Right now, he's
planned for a
suture release in February--he'll be 14 months by that time.
Every article
I've read has said that he needs surgery by the time he's 1 yr old.
Has
anyone else waited this long?
Second question. Anyone have any recommendations for shoes in
infant size 2
1/2 to 3? Sam has a thick instep (from the floor to the top of
his foot)
which makes finding the right fitting shoe a problem--the fact that
he has
funny toes doesn't help either. Has anyone found good shoes for
a thick
insole?
Thanks in advance,
Bill Murphey
Little Rock, AR
wcmurph@aol.com
=========================================================================
Date: Thu, 19 Nov 1998
14:37:39 -1000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Dr. Joana Magno"
<magnomd@ALOHA.NET>
Subject: Re: Surgery Question
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Each child is different and really has unique needs in terms of surgery,
timing, etc. I think that in general, the surgeons
like to get surgery
going when the child is old enough and big enough to tolerate
the surgery
---- occasionally, we have heard of children that need
their first
cranial surgery in the first few months of life. Other times,
when there
is no compelling need, delaying surgery will be perfectly appropriate.
Sounds like your child is doing well, and that delaying surgery
a few
months after his first birthday is perfectly reasonable. It makes sense,
too, to combine surgeries whenever feasible from a medical standpoint
(like doing hand surgery, etc with the cranial surgery).
We recently had a five year old child from Korea with Apert's
have her
first cranial surgery done, and indeed, her brain was squished
into a
skull that was a few sizes too small, but she did not have any
developmental delays because of it. The surgeons all were saying
however,
that if she had waited too much longer that problems could possibly
have
become evident....
With regard to the shoes, we really liked the Elefanten
brand made in
Germany. They were quite expensive ($30 - 40 and
up) but were quite
good for our Margaret, who wore them from the time she started
walking to
about the age of four. I know that Nordstroms had a good variety
of their
shoes. Especially good were the sandal type shoes that had three
buckles
across the front. Very supportive, and great for those
wide little Apert
feet. Didn't matter that the big toe was shorter than the rest,
and the
adjustable buckles allowed some flexibility in fit, to make them
last a
little longer than conventional shoes.
Now, when we can we buy shoes that come in wide widths.
Over time, and
training with shoes, I think Margaret's forefoot has slimmed
down --- used
to have toes that spread out, and now they are much straighter.
Joana Magno
----------
> From: WCMurph@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Surgery Question
> Date: Thursday, November 19, 1998 2:09 PM
>
> Hello to all,
>
> Our son, Sammy, is almost 11 months old now and hasn't had a cranial
surgery,
> yet. His doctors say that he is progressing "normally" and
there is no
need
> for surgery just yet as he hasn't shown any signs of inter-cranial
pressure.
> In fact, they are overwhelmed by how well he has done up to now.
Sammy
has
> met all the "normal kid" milestones so far, so we're not too concerned
about
> retardation. My wife and I were just curious to find out if
anyone else
has
> delayed their kid's cranial surgery this long. Right now, he's
planned
for a
> suture release in February--he'll be 14 months by that time.
Every
article
> I've read has said that he needs surgery by the time he's 1 yr old.
Has
> anyone else waited this long?
>
> Second question. Anyone have any recommendations for shoes
in infant
size 2
> 1/2 to 3? Sam has a thick instep (from the floor to the top
of his foot)
> which makes finding the right fitting shoe a problem--the fact that
he
has
> funny toes doesn't help either. Has anyone found good shoes
for a thick
> insole?
>
> Thanks in advance,
>
> Bill Murphey
> Little Rock, AR
> wcmurph@aol.com
=========================================================================
Date: Thu, 19 Nov 1998
19:40:21 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Tom Head <tlh@NETDOOR.COM>
Subject: Re: question?
In-Reply-To: <64f16d0e.36539050@aol.com>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
On Wed, 18 Nov 1998 Nodrmat26@AOL.COM wrote:
> For some reason, I wasn't able to access your picture. It may
be my computer,
> I haven't been able to access a few pictures I've gotten lately.
Hiya, Christina!
I hope this doesn't sound insultingly obvious, but (if you're using
Eudora
or Outlook Express) have you checked the "Maximum Message Size" box
in the
Properties?
Peace,
Tom Head
tlh@netdoor.com
http://www2.netdoor.com/~tlh
"The Earth is degenerating these days. Bribery and corruption
abound. Children no longer mind their parents, every man
wants
to write a book, and it is evident that the end of the world
is
fast approaching."
-- anonymous clay tablet, c. 2800 BC
"Being properly distracted for a moment is child's play; being
rightly distracted for a lifetime is an art."
-- Douglas Adams
=========================================================================
Date: Thu, 19 Nov 1998
18:55:01 -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: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: TRAVEL OUT OF STATE
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Belinda,
How are you? Difficult decision you have to face. We did
not travel
out of state, but have traveled from San Diego to Los Angeles for
several of Allies cranial surgeries, including the Le Fort midface.
This
is not a surgery that you want someone who is inexperienced.
For that
matter, no surgery is. It is worth traveling for. We have cranialfacial
teams here in San Diego, but opted to travel in order to have the Dr
who
we felt was the most qualified to perform Allies surgeries. The
Dr. we
chose was Dr. Henry Kawamoto, he works with Kaiser patients and out
of
UCLA.. He is one of the most experienced Drs in this field. His results
are fabulous, and low infection rate. In addition to being a plastic
surgeon, he is a dentist. He studied with Tessier who pioneered
the
surgery. The other important factor is that you want a TEAM who
is
experienced in working together. When we were deciding whether to stay
in San Diego we were torn as what to do. Leave our other two sons?
Less
of a support system, expense? We prayed about it and I decided
to talk
to Dr. Kawamoto about it, he put it this way. Many surgeons are
capable
of performing the surgery, but few have the experience to know what
to
do when things go wrong. When he said that, it was like a burden
lifted
and we knew we had to go.
In Los Angeles they also have a wonderful Ronald McDonald house, which
is a lifesaver, not so much for the money it saves, which of coarse
is a
factor, but the best part is the support that is there. It is
safer at
the Ronald McDonald house, and they have a large kitchen that everyone
shares, so not every meal is eaten out. It gets old quickly having
to
eat all meals out. Difficult part is your family support group
may not
be able to travel that far, thats why the Ronald Mcdonald house is
so
good. There are people who are experiencing the same thing as you and
you quickly find that there is always someone whose situation is worse
than yours, no matter how difficult your situation seems.
Most importantly, you must feel comfortable with the Dr. you have
chosen. I hope this helps.
Best regards,
Claudia Salazar
Allies mom
NephiRose@AOL.COM wrote:
>
> Hello all...
>
> Still bent on doing some research on the "best" doctor through out
the nation.
> Got quite a few referrals before. I'm impressed. However, just
out of
> curiousity...
>
> How many of you travel out of state for medical care for your
child for
> his/her craniofacial or hand surgeries? If you do so, would
you mind e-
> mailing me that you do and who you go to? I am contemplating
the idea of
> traveling outside of Utah to just that, but I need some idea of the
pros and
> cons here. Thanks
>
> Belinda
=========================================================================
Date: Thu, 19 Nov 1998
19:02:29 -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: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Liz's Picture in jpg format
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Thanks George,
Much faster and Better, can you share how to do that? I dont
have a
clue! Or is it something that takes years of practice, school etc.
Let
us know. thanks,
Claudia
George Starr wrote:
>
> Smaller, and same quality (to my eyes at least) Hope you all get
this one.
> Should be better. Hope Liz Doesn't mind I changed the format and
reposted.
> the other file was over 1.6 mb this one is only 88k which = .088
mb
>
> Later,
> George
>
> ------------------------------------------------------------------------
>
>
Name: Liz.jpg
> Liz.jpg Type:
JPEG Image (image/jpeg)
>
Encoding: base64
=========================================================================
Date: Thu, 19 Nov 1998
19:05:48 -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: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: New Place to send pictures
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Great Idea Don!
=========================================================================
Date: Fri, 20 Nov 1998
16:25:04 +1300
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: note
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Kia Ora Marilyn
Greetings from down under in New Zealand. Congratulations on the safe arrival of your granddaughter Carlee. It sounds as though she had hands like our Amy - rosebuds with no separation at all. Amy also had problems with infection and we just kept the area as clean as possible and used an appropriate cream. Fortunately she chewed her dummy in preference to her hands. As her fingers were released the infections stopped - she now has 5 digits on each hand.
Amy is now nearly 8 years old and is doing just great in most areas. If you want to know more, please ask.
Hope your son and family are coping with the additional pressure - life can be pretty tough for the first few years but it does get easier.
Regards
Ann, Howard and Amy
=========================================================================
Date: Fri, 20 Nov 1998
16:25:06 +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: Re: question?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Liz
>I don't know how to send it in jpg.
We are pleased you don't because we haven't got the programme to open jpg files. Can do bmp with no problem. However your pictures take aaaages to download - any chance of making them a smaller file?
Regards
Ann
NZ
=========================================================================
Date: Fri, 20 Nov 1998
16:29:25 +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: question?
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Whoops, meant to check that before it went. It is GIF files we can't open. I think Don's idea should solve the problem.
Ann
At 04:25 PM 20/11/98 +1300, you wrote:
>Hi Liz
>
>>I don't know how to send it in jpg.
>
>We are pleased you don't because we haven't got the programme to open
jpg files. Can do bmp with no problem. However your pictures
take aaaages to download - any chance of making them a smaller file?
>
>Regards
>Ann
>NZ
>
>
=========================================================================
Date: Fri, 20 Nov 1998
07:27:15 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: Jenngram@AOL.COM
Subject: Re: Surgery Question
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For Jordans shoes, we went to a shoe store that was family owneda dn
ahd been
here a long time. They specialize in "hard to fit feet". I loved
the place.
They knew so much about feet and told me as much as the doctors had
about how
his feet would grow and function over time. I just felt it was better
than
going to a shoe store where the employees change on a weekly basis
and really
had no knowledge of how shoes are suppose to fit and their purpose.
PLUS, if
he outgrows them in less than 3 mos. we get another pair at no cost.
And
Jordan loves his shoes and they fit quite well.
Jenn(TAmpa/St. Pete)
=========================================================================
Date: Fri, 20 Nov 1998
09:07:27 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: "Qing (Anna)
Gong" <qing.gong@PS.GE.COM>
Organization: LTI
Subject: Re: Surgery Question
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WCMurph@AOL.COM wrote:
> he'll be 14 months by that time. Every article
> I've read has said that he needs surgery by the time he's 1 yr old.
Has
> anyone else waited this long?
Hi,
My daughter vivi (3yrs old) had her first craniofacial (forehead
advancement) at 10 1/2 months old. At our last check up at
the Children's in Boston, the doctor said that her forehead looked
so good that it's unlikely that she would ever need a 2nd advancement
like most other apert kids. This is probably because that she had
her first surgery late compared to the 3-6 months recommended
time window. Developmentally Vivi has been above her
age group. She started walking at 14 months old.
At 3 yrs old, she is speaking full sentences (working on
articulation), knows all the colors, shapes, alphabets, numbers,
started reading simple words, can count to 30 (and count backwards from 20),
and she uses computer like a pro. She is a funny and happy child full
of life.
Hope this helps.
Qing Gong
Logic Technology Inc.
qing.gong@ps.ge.com
518-385-8376 (o)
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<HTML>
WCMurph@AOL.COM wrote:
<BLOCKQUOTE TYPE=CITE> he'll be 14 months by that time.
Every
article
<BR>I've read has said that he needs surgery by the time he's 1
yr old.
Has
<BR>anyone else waited this long?</BLOCKQUOTE>
<PRE>Hi,</PRE>
<PRE>My daughter vivi (3yrs old) had her first craniofacial (forehead</PRE>
<PRE>advancement) at 10 1/2 months old. At our last check up at</PRE>
<PRE>the Children's in Boston, the doctor said that her forehead looked</PRE>
<PRE>so good that it's unlikely that she would ever need a 2nd advancement</PRE>
<PRE>like most other apert kids. This is probably because that she had</PRE>
<PRE>her first surgery late compared to the 3-6 months recommended</PRE>
<PRE>time window. Developmentally Vivi has been above her</PRE>
<PRE>age group. She started walking at 14 months old.</PRE>
<PRE>At 3 yrs old, she is speaking full sentences (working on</PRE>
<PRE>articulation), knows all the colors, shapes, alphabets, numbers,</PRE>
<PRE>started reading simple words, can count to 30 (and count backwards from 20),</PRE>
<PRE>and she uses computer like a pro. She is a funny and happy child full</PRE>
<PRE>of life.</PRE>
<PRE>Hope this helps.</PRE>
<PRE>Qing Gong
Logic Technology Inc.
qing.gong@ps.ge.com
518-385-8376 (o)</PRE>
</HTML>
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=========================================================================
Date: Fri, 20 Nov 1998
08:56:36 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Fw: Every day is Thanksgiving
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Subject: Fwd: Every day is Thanksgiving
>
>
>EVERYDAY'S THANKSGIVING
>
>
>
> Even though I clutch my blanket and growl when
> the alarm rings each morning, thank you Lord,
> that I can hear. There are many who are deaf.
>
> Even though I keep my eyes tightly closed
> against the morning light as long as possible,
> thank you Lord, that I can see. There are many who
> are blind.
>
>Even though I huddle in my bed and put off
> the effort of rising, thank you Lord,that I have strength
> to rise. There are many who are bedridden.
>
> Even though
> the first hour of my day is hectic, when socks are lost, toast
> is burned,and tempers are short, thank you Lord, for my family.
> There are many who are lonely.
>
> Even though our breakfast
> table never looks like the pictures in magazines and the menu
> is a times unbalanced, thank you Lord, for the food we have.
> There are many who are hungry.
>
>Even though the routine of
> my job is often monotonous, thank you Lord, for the opportunity
> to work. There are many who have no job.
>
> Even though I grumble
>and bemoan my fate from day to day and wish my circumstances
> were not so modest, thank you Lord, for the gift of LIFE.
>
>
>
>
>
>
>
>
>______________________________________________________
>Get Your Private, Free Email at http://www.hotmail.com
>
=========================================================================
Date: Fri, 20 Nov 1998
10:14:55 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marilyn Williams
<marpratt@BELLSOUTH.NET>
Subject: note
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Hi, this is to all the nice people that replyed to my first note. thanks
now I don't feel so alone with what we are going thru. Carlee, has
be a
blessing since the day she was born.Iknow her mom and dad have a long
road ahead of them ,but with people like you all the way will be easier
and with God in our corner we to will get thru all things to come.thanks
again Marilyn
=========================================================================
Date: Fri, 20 Nov 1998
10:49:38 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
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From: NephiRose@AOL.COM
Subject: Out of State
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Hello all,
Thanks for feedback on getting medical care out of state. This
list serv has
been great service..I've gotten so much information the last 6 months,
than
I've ever had the first 18 months of Sarah V.'s life. All I can
say is the
information you all share with each other is definitely empowering!
The
wonderful things we can do for our children just because we are educated.
Thank you.
Belinda Vicars
=========================================================================
Date: Fri, 20 Nov 1998
10:51:49 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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From: NephiRose@AOL.COM
Subject: Re: Surgery Question
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In a message dated 98-11-20 07:27:30 EST, you write:
<< I just felt it was better than
going to a shoe store where the employees change on a weekly
basis and really
had no knowledge of how shoes are suppose to fit and their purpose.
>>
I've bought so many shoes, it's not even funny. Sarah V. won't
wear them. I
agree, that you need to go someone that knows something about shoes.
For me,
I just had her wearing socks and walking around in them...but with
the snow
coming...I don't think that's going to work anymore. :) Good
luck guys in
finding the right shoes.
Belinda Vicars
=========================================================================
Date: Fri, 20 Nov 1998
11:47:09 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: CPAP
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Hello all. Two quick questions. Is anyone out there using CPAP at night?
If so, is it working. Jacob (2yrs old) has been fitted with the
mask but
we have not started using it. He was doing well