Hello to All,
Well I have just got out of hospital with Ashleigh this morning.
2 nights
ago she was sitting on my lap and she had a high temp all day went
to vomit
and then it was all crazy she couldnt get her breath turned blue went
limp
and as I panicked rang the ambulance as my husband attended to her.
He
breathing came back shallow and the ambulance soon arrived. when
they got
here this happened again this time I couldnt take it became histerical
went
outside and walked around like a crazy persin not making any sense
while my
husband and the ambulance officers attended to her. They put
her on oxygen
and then tok her to the hospital i found i couldnt cope with any of
this.
Within hours after the next dose of Panadol Asheligh was like a brand
new
child as if nothing had happened. I have been a mess since and
am trying to
seek councelling to help me get through this as I am not coping at
all. I
am alwys crying and having visions of what happened. Being 39
weeks
pregnant and very hormonal is probably not helping.
I thought I had lost her and now am very scared. What do I do?????????????
Not copeing at all
Carol
=========================================================================
Date: Thu, 15 Oct 1998
03:54:13 EDT
Reply-To: Information exchange and Internet
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Febrile Convulsions
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In a message dated 10/14/98 11:27:10 PM Pacific Daylight Time,
carolh@HOTKEY.NET.AU writes:
<< new >>
hi my name is liz saylan i have apert's syndrome and have for 30 years.
don't
panic things will in time get better just have faith and think positive
your
daughter feeds off your strength and she needs you to be strong not
only for
her but yourself and your baby that is on the way
liz saylan
=========================================================================
Date: Thu, 15 Oct 1998
03:58:52 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
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GREETINGS MY NAME IS LIZ AND MY CONFIRMATION GOT CANCELLED WHEN I HAD
SENT A
MEMO BACK SO I AM TRYING AGAIN PLEASE HELP ME.
=========================================================================
Date: Thu, 15 Oct 1998
07:07:29 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Febrile Convulsions
In-Reply-To: <001801bdf804$e609c700$0b038aca@carolh>
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> I thought I had lost her and now am very scared. What do I do?????????????
>
> Not copeing at all
>
Carol,
I'd say you're coping pretty well, considering.
After all, you
managed to arrange for counseling and to post here. This does
sound
like a "typical" febrile convulsion. I wish I could tell you
she
won't do it again, but the truth is that children are either prone
to
them or not -- although they do outgrow them. Before she has
another
fever, you'll want to discuss strategy with her doctor -- how much
panadol, how often, what else would be appropriate if that doesn't
work right away, etc. As you've already observed, once the
temperature is down, it's as if nothing ever happened from the
child's point of view -- but mom is never the same.
My boys never had febrile seizures, but 2 of my younger
sisters
did (on separate occasions, thank goodness). It made quite an
impression on me -- and they're in their 30's now.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Thu, 15 Oct 1998
08:44:19 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Febrile Convulsions
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Hello Carol. I have to agree with Judy; I think seeking counseling
and
posting here say alot for how you are coping. I am not real familiar
with
what a febrile convulsion is; however, Carmen Rae started vomitting
uncontrollably one evening and started passing out. We rushed
her to the
ER and when we got there my husband took charge and I ran through the
parking lot and finally into the ER screaming like crazy. I know
I scared
everyone within a mile half to death. Don't feel bad about not
coping
well. This is your darling little girl and moms are allowed to
be
frightened when these unexpected events occur. I always feel
bad after
something happens and I don't feel like I helped my husband.
He always
gives me a hug and says, "That is why God gave you ME!!!!" I
am also
impressed that you did so well considering that you are almost ready
to
deliver. I did not go through anything like this during my pregnancy
and
trust me, there were times right before Carmen Rae was born that I
was a
basket case (for NO apparent reason). Be kind to yourself and
realize that
your body, as well as your emotions have been through ALOT!!!!!
I will be
thinking of you and praying that you will somehow be able to get that
frightening experience out of your head.
Take Care,
Robin Hill
----------
> From: Jarol <carolh@HOTKEY.NET.AU>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Febrile Convulsions
> Date: Thursday, October 15, 1998 2:27 AM
>
> Hello to All,
>
> Well I have just got out of hospital with Ashleigh this morning.
2
nights
> ago she was sitting on my lap and she had a high temp all day went
to
vomit
> and then it was all crazy she couldnt get her breath turned blue
went
limp
> and as I panicked rang the ambulance as my husband attended to her.
He
> breathing came back shallow and the ambulance soon arrived.
when they
got
> here this happened again this time I couldnt take it became histerical
went
> outside and walked around like a crazy persin not making any sense
while
my
> husband and the ambulance officers attended to her. They put
her on
oxygen
> and then tok her to the hospital i found i couldnt cope with any
of this.
>
> Within hours after the next dose of Panadol Asheligh was like a brand
new
> child as if nothing had happened. I have been a mess since
and am trying
to
> seek councelling to help me get through this as I am not coping at
all.
I
> am alwys crying and having visions of what happened. Being
39 weeks
> pregnant and very hormonal is probably not helping.
>
> I thought I had lost her and now am very scared. What do I
do?????????????
>
> Not copeing at all
> Carol
=========================================================================
Date: Thu, 15 Oct 1998
08:52:47 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Update on Houdini Hill!
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit
Hello everyone! I just thought I would update you on Carmen Rae's
progress. We are out of casts (thank GOD!!!!)!!!! We are
now cleaning
between Carmen's new thumbs and the rest of her fingers each night
and
wrapping her in gauze. The doctor said this is mainly to keep
her hands
out of her mouth another week so the graphts (It's amazing; my daughter
had
something done to her hands and I don't have a clue how to spell it???????)
will heal. She started therapy with a pediatric OT. No
certified hand
therapist. Apparently this only means they have taken some standardized
test and passed it. Not required, so I wondered how many wonderful
OT's
there were out there that just hadn't sat for the test. Anyway,
alot of
the CHTs were not experienced with treating children. I decided
it was
more important that the person working with my child was experienced
with
children rather than passing a test. ANYWAY, so far WE LOVE HER!!!!!!
I
was amazed that Carmen let her touch her hands so much; she is usually
funny about anyone messing with her hands. We have found that
Jennifer is
right. Carmen is already moving those thumbs around and trying
to grab
anything in her sight. We are so excited; it brings tears to
my eyes.
Hope everyone is doing well.
Robin Hill
Newnan, GA
=========================================================================
Date: Thu, 15 Oct 1998
09:52:43 -0500
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Seth update:
MIME-Version: 1.0
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Dear Friends,
First, I want to tell Christine how happy I am that things are looking
up.
I am glad that Zoey is home. Home is the best place.
Second, welcome to Liz and the Lee family. I look forward to hearing
more
about each of you. I am sorry to greet you with the following
news but
after some thought I have decided that I need to share this with my
friends. I wanted to wait until things were looking up and I
could be
positive.
Third, an update on Seth. We have had a very rough two weeks.
It all
started with an infection in the right distraction device. That
side
continued to drain for more than a week after the surgery and on September
25 the drainage changed from a bloody fluid to a purulent paste.
He was
put on oral antibiotics. The drainage worsened and Seth began
to complain
of pain. We saw his cranial surgeon on Friday October 2 and a
culture was
taken. On Monday the 5th Seth went in to OR to have the sight
drained and
cleaned and to have the trach removed. By the middle of that
night his
temperature spiked, he was delirious (saying very strange things),
his head
hurt, was light sensitive and had a sore neck. A spinal tap confirmed
meningitis. He was put on a high dose of intravenous antibiotics.
He was
very, very sick and we were very frightened. After a second spinal
tap on
Friday that showed a significant improvement on the white blood cell
count,
14 as compared to 3,140 on Tuesday, we came home on Saturday.
A home
health care nurse met us at the door with all the equipment we would
need
to administer IV antibiotics over the next three weeks.
Seth seems to have finally turned the corner. This morning he
said that it
felt good to finally feel like himself. He is eating and drinking
and
spending less time on the couch staring at the ceiling.
On the bright side, the trach is out and he is able to breath at night
with
his mouth closed. The distraction is complete and the cables
have been
cut. He is scheduled to have the distraction devices removed
on December
10, l998. Another surgery, oh my, I can't wait. I feel
that I have aged
10 years in the last week and a half.
By the way, Stephanie Tingley called last night and said that Caroline's
surgery was cancelled because she had a cold. She is rescheduled
for
October 30. It was really hard for me to tell her about Seth,
I had to
call her back after a few minutes of wondering what was the right thing
to
do, because, of course, she wanted to know how Seth was and I had been
evasive during our first conversation.
Thank your prayers and well wishes.
Peace, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Thu, 15 Oct 1998
10:24:14 EDT
Reply-To: Information exchange and Internet
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: First time on!
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Hi everyone. My name is Shirley Tanner, my husband is Larry. We
have 5
children (his, mine & ours). Ours being a wonderful little boy,
6-1/2 yrs old,
with Aperts. His name is Forrest Collin & goes by "Collin".
So far he has had
1 craniofacial surgery @ 4mos old, 2 hand surgeries to seperate his
fingers, 1
hand surgery to put "permanent" bends in his fingers & straighten
his thumb on
his right hand & straighten his little toe that curled under &
was causing
pain. He also has had tubes put in his ears 3 seperate times, had a
benign
tumor removed from his tush & has had his tonsils removed, under
an emergency
situation. If I'm not mistaken, that is all to date, but like
the others, I
tend to forget how many he's had. His major surgeries have been
done @
Medical City Dallas Hospital in Dallas, TX. The doctors there are wonderful.
They have done an excellent job on Collins fingers. He uses them very
well.
The "bends" give him a much better pinch (index to thumb). He can even
pick up
an icicle off the floor! As a matter of fact, there isn't much he can't
do
with them. Just like any other kid, he gets into his share of
mischief!
Collin is nearly "non-verbal". He can
say a few words (simple words) &
we have heard him say words like "marshmallow" (his favorite) and "shovel"
but
only once. So far we have had every test imaginable & cannot find
a reason for
his lack of speech. The doctors say he will talk when he gets
ready but I
wonder. For years we have been waiting for him to get "ready". Does
anyone
have any ideas on who to take him to? About the only kind of
dr. we haven't
taken him to is a Neurologist, except the one he sees before surgery
in
Dallas. Collin also has ADHD & is on Ritalin, which helps him alot.
He has a
very short attention span, even on the Ritalin. His teacher (kindergarten)
says he'll sit for about 5 minutes to do seatwork before he wants to
get up &
move onto something else. His "receptive" skills are wonderful.
He is a whiz
on the computer-works that mouse just like a pro! He has just
started using a
"picture board" for communication, mostly @ school, as he can certainly
get
his point across very well for what he wants. He is Very independent.
He
loves to "swing" things, especially a homemade toy out of shoe laces,
rubber
band & a clothes pin! Who needs Toys-R-Us?!
Collin's older siblings are Angel, 26,
Stacey,25, Dennis,23 & Donnie, 21
& when they lived @ home they spoiled him rotten. Needless
to say, he is a
great con-man. Gets pretty much anything he wants. This may have
contributed
to the lack of speech, as he never had to "ask". Someone was
always getting
for him & doing for him. To all those new parents with (or
without) Apert
kiddos - let them do as much as they can on their own. It is
hard when they
are wrapped up in bandages, but I believe it will help them as they
get older.
I know this was supposed to be
a "Short" introduction & I promise not
to make my msgs so long from now on. This listserv is wonderful.
I had some
support when Collin was born, but not like this.
Shirley Tanner (Hartford, AL)
tanranch@aol.com
=========================================================================
Date: Thu, 15 Oct 1998
11:19:02 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Seth update:
MIME-Version: 1.0
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I am so sorry to hear about your rough time over the past two weeks.
However, I am glad to hear Seth is doing better. We will
keep all of you
in our thoughts and prayers.
Robin Hill
Newnan, GA
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Seth update:
> Date: Thursday, October 15, 1998 10:52 AM
>
> Dear Friends,
>
> First, I want to tell Christine how happy I am that things are looking
up.
> I am glad that Zoey is home. Home is the best place.
>
> Second, welcome to Liz and the Lee family. I look forward to
hearing
more
> about each of you. I am sorry to greet you with the following
news but
> after some thought I have decided that I need to share this with
my
> friends. I wanted to wait until things were looking up and
I could be
> positive.
>
> Third, an update on Seth. We have had a very rough two weeks.
It all
> started with an infection in the right distraction device.
That side
> continued to drain for more than a week after the surgery and on
September
> 25 the drainage changed from a bloody fluid to a purulent paste.
He was
> put on oral antibiotics. The drainage worsened and Seth began
to
complain
> of pain. We saw his cranial surgeon on Friday October 2 and
a culture
was
> taken. On Monday the 5th Seth went in to OR to have the sight
drained
and
> cleaned and to have the trach removed. By the middle of that
night his
> temperature spiked, he was delirious (saying very strange things),
his
head
> hurt, was light sensitive and had a sore neck. A spinal tap
confirmed
> meningitis. He was put on a high dose of intravenous antibiotics.
He
was
> very, very sick and we were very frightened. After a second
spinal tap
on
> Friday that showed a significant improvement on the white blood cell
count,
> 14 as compared to 3,140 on Tuesday, we came home on Saturday.
A home
> health care nurse met us at the door with all the equipment we would
need
> to administer IV antibiotics over the next three weeks.
>
> Seth seems to have finally turned the corner. This morning
he said that
it
> felt good to finally feel like himself. He is eating and drinking
and
> spending less time on the couch staring at the ceiling.
>
> On the bright side, the trach is out and he is able to breath at
night
with
> his mouth closed. The distraction is complete and the cables
have been
> cut. He is scheduled to have the distraction devices removed
on December
> 10, l998. Another surgery, oh my, I can't wait. I feel
that I have aged
> 10 years in the last week and a half.
>
> By the way, Stephanie Tingley called last night and said that Caroline's
> surgery was cancelled because she had a cold. She is rescheduled
for
> October 30. It was really hard for me to tell her about Seth,
I had to
> call her back after a few minutes of wondering what was the right
thing
to
> do, because, of course, she wanted to know how Seth was and I had
been
> evasive during our first conversation.
>
> Thank your prayers and well wishes.
>
> Peace, Dori
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Thu, 15 Oct 1998
12:23:02 -0400
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: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Information, please!
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone, and a special welcome to those of you who have joined the
listserv in the last couple of months. Our family keeps growing
and
growing, and we are very proud of that.
I decided it's time to update my personal address book, and I'd like
some help from each of you. I want to collect typical personal
information from each of you: family member names, address, phone
numbers, occupation, and then some info about the person in your life
who has Apert - their name, date of birth, and relationship to you.
This information will remain strictly private unless you tell me
otherwise. I will be finishing the rest of the kids' pages this
week
and making some updates to Teeter's main page, so it will be a great
time to make any changes you'd like to your personal information.
Please don't use the listserv to respond to this message - email me
directly at catndon@apert.org
This information is ENTIRELY VOLUNTARY and for those of you who choose
not to respond I have absolutely no problem with that. I just
mainly
want as much information as possible about you because I care so much
about this listserv and I want to make every effort to be able to hook
up new members with our more experienced people.
Thank you all in advance,
Don
=========================================================================
Date: Thu, 15 Oct 1998
14:30:16 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: First time on!
MIME-Version: 1.0
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Hello Shirley. We want to welcome your family to our group.
We are Mike
and Robin Hill from Newnan, GA (about 30 miles south of Atlanta).
We have
a wonderful daughter named Carmen Rae who was born with Apert Syndrome
on
January 18, 1998. She has had one cranial surgery, a VP shunt
placement,
and her thumbs released (very recently). This group is a wonderful
network
of support and friendship. We think you will love it here; we
sure do!!!!
Welcome again! Carmen Rae is nine months and making alot of sounds
(her
newest is the good ole, DADA) but is not really at a TALKING age.
Sorry I
don't know much to tell you in that department, but I know there are
others
on the server that will be able to help. Good luck.
Robin Hill
Newnan, GA
CARMENRAE@PRODIGY.NET
----------
> From: Shirley Tanner <TANRANCH@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: First time on!
> Date: Thursday, October 15, 1998 10:24 AM
>
> Hi everyone. My name is Shirley Tanner, my husband is Larry.
We have 5
> children (his, mine & ours). Ours being a wonderful little boy,
6-1/2 yrs
old,
> with Aperts. His name is Forrest Collin & goes by "Collin".
So far he
has had
> 1 craniofacial surgery @ 4mos old, 2 hand surgeries to seperate his
fingers, 1
> hand surgery to put "permanent" bends in his fingers & straighten
his
thumb on
> his right hand & straighten his little toe that curled under
& was
causing
> pain. He also has had tubes put in his ears 3 seperate times, had
a
benign
> tumor removed from his tush & has had his tonsils removed, under
an
emergency
> situation. If I'm not mistaken, that is all to date, but like
the
others, I
> tend to forget how many he's had. His major surgeries have
been done @
> Medical City Dallas Hospital in Dallas, TX. The doctors there are
wonderful.
> They have done an excellent job on Collins fingers. He uses them
very
well.
> The "bends" give him a much better pinch (index to thumb). He can
even
pick up
> an icicle off the floor! As a matter of fact, there isn't much he
can't
do
> with them. Just like any other kid, he gets into his share
of mischief!
> Collin is nearly "non-verbal".
He can say a few words (simple
words) &
> we have heard him say words like "marshmallow" (his favorite) and
"shovel" but
> only once. So far we have had every test imaginable & cannot
find a
reason for
> his lack of speech. The doctors say he will talk when he gets
ready but
I
> wonder. For years we have been waiting for him to get "ready". Does
anyone
> have any ideas on who to take him to? About the only kind of
dr. we
haven't
> taken him to is a Neurologist, except the one he sees before surgery
in
> Dallas. Collin also has ADHD & is on Ritalin, which helps him
alot. He
has a
> very short attention span, even on the Ritalin. His teacher
(kindergarten)
> says he'll sit for about 5 minutes to do seatwork before he wants
to get
up &
> move onto something else. His "receptive" skills are wonderful.
He is a
whiz
> on the computer-works that mouse just like a pro! He has just
started
using a
> "picture board" for communication, mostly @ school, as he can certainly
get
> his point across very well for what he wants. He is Very independent.
He
> loves to "swing" things, especially a homemade toy out of shoe laces,
rubber
> band & a clothes pin! Who needs Toys-R-Us?!
> Collin's older siblings are Angel,
26, Stacey,25, Dennis,23 &
Donnie, 21
> & when they lived @ home they spoiled him rotten. Needless
to say, he is
a
> great con-man. Gets pretty much anything he wants. This may
have
contributed
> to the lack of speech, as he never had to "ask". Someone was
always
getting
> for him & doing for him. To all those new parents with
(or without)
Apert
> kiddos - let them do as much as they can on their own. It is
hard when
they
> are wrapped up in bandages, but I believe it will help them as they
get
older.
> I know this was supposed
to be a "Short" introduction & I promise
not
> to make my msgs so long from now on. This listserv is wonderful.
I had
some
> support when Collin was born, but not like this.
>
> Shirley Tanner (Hartford, AL)
> tanranch@aol.com
=========================================================================
Date: Sat, 15 Aug 1998
04:15:44 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Update on Houdini Hill!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Robin & Carmen,
I hope Carmen enjoys her new hands. I remember when I had my foot
surgery
and had to clean and re gause, oh how fun that was. :>)
Best of luck.
-Andrea
=========================================================================
Date: Thu, 15 Oct 1998
18:13:23 -0400
Reply-To: Information exchange and Internet
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Asher Emeline Lee
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Hello & Welcome!
CONGRATULATIONS!
We are the Bradley's and we live in Algonquin, IL. Our daughter MIchelle
has Apert's and she is almost 8 years old, she is doing great. I know
it's
overwhelming but take it one day at a time. I'm sure that Asher will
be a
great kid.
Ryan, Martha & Michelle
=========================================================================
Date: Thu, 15 Oct 1998
18:13:19 -0400
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Seth update:
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Dori,
We will be praying for Seth, I'm glad he is home.
Martha
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Date: Thu, 15 Oct 1998
18:13:22 -0400
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Febrile Convulsions
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Carol,
I'll be praying for you.
Martha
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Date: Thu, 15 Oct 1998
15:41:15 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Febrile Convulsions
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Carol,
Hang in there, we are here to stand by your side when you need it the
most.
That is what this support group is for. This is not easy
to handle at
all. What a scarey experience! If it were us, I would try
to find out the
underlying reason for Ashleigh's convulsions - or what to do when you
sense
one coming on. This is a serious matter. Counseling will
help you learn
how to handle/deal with all of this stress. - at least it did for me.
Good luck with the delivery of your new little one. Remember
we are here
for a shoulder to lean on when you need it.
Hugs, Robyn J.
>
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Date: Thu, 15 Oct 1998
15:41:16 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Seth update:
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Dori, I am glad to hear that Seth is doing better. Meningitis
- How
scarey! What a tough 2 weeks! You guys will be in our prayers
for a
continued and speedy recovery.
Hugs, Robyn J.
=========================================================================
Date: Thu, 15 Oct 1998
19:40:24 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Febrile Convulsions
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Carol~
Sounds like a truly scary experience. I've never had anything
quite that
scary, but once Zoey's oxygen tank ran out of oxygen (the gage was
broken)
when she first came home from the hospital and HAD to be on oxygen
(she had a
trach) and her oxygen saturation went down into the 60's and 70's and
I had to
call 911. I was crying and pretty hysterical and could hardly
think. I have
no husband, but my mother was there and stayed calm, so it's great
to have
someone else there to help. As long as she stayed calm, I didn't
lose it
completly. I want you to know that I know where you're coming
from and being
as pregnant as you are, no mother in this world (in my opinion) would
have
been able to stay calm. Hang in there.
Christina
San Antonio
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Date: Thu, 15 Oct 1998
19:44:48 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Seth update:
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Dori~
I also wanted to tell you that I'm sorry you had to go through that...how
aweful. I'm so glad that he's doing better and is home.
That trach coming
out is absolutely wonderful...I sure can't wait until it's Zoey's turn.
Zoey
did have a similair experience, however the culprit of her condition
is to
this day unknown. Enemies that you can't find are worse than
anything. I was
so upset. Zoey was in for a respiratory infection and she was
in a few days
then all of a sudden, I came into her room and she was motionless,
just
staring off into nowhere land. I came in and said the usual stuff
in my
"Zoey" voice, and she didn't flinch with any kind of recognition.
I was
scared and I thought that she was going to die...she had NEVER done
anything
like that before. She snapped out of it gradually and we never
did find out
what was wrong with her, but I was just glad that was over and she
was OK.
Again...I'm very glad that Seth is OK. Take care.
Christina
San Antonio
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Date: Thu, 15 Oct 1998
21:38:03 EDT
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From: Yonstein@AOL.COM
Subject: Re: Welcome to our newcomers
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Welcome to Liz and the Lee Family.
We are the Krebs; Brian, Janine, Nicholas and Emily. Emily is
15 months old
with Aperts. She has had 3 surgeries so far and is scheduled
Nov. 4th for her
first hand surgery. She is a wonderful baby with a great disposition.
The
beginning is the most difficult. Just trying to understand the
medical info
is very overwhelming, not to mention the feelings you are going through
after
the birth. Just try to take your time and enjoy your little girl.
Everything
seems to just fall into place. I, too, can't imagine my life
without Emily,
and she has changed mine and so many lives in her short time with us.
To Liz, we live in New York, Nassau County, Long Island. I see
you grew up in
Queens, but are now Iiving in Georgia. Welcome. It's nice
to get some
information from someone who has been through what our children still
have to
go through.
Best wishes,
Janine Krebs
(NY)
=========================================================================
Date: Thu, 15 Oct 1998
21:43:07 EDT
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From: Yonstein@AOL.COM
Subject: Re: Febrile Convulsions
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Dear Carol:
Boy, did you have a scare. How is Ashleigh doing now? Hopefully
she is not
running a fever again. You have every right to panic as you say.
I, too,
think you are dealing ok by taking steps to help yourself. It's
the person
who doesn't take any affirmative action in a situation that is not
coping or
dealing with it. I laughed when I read the Hill's story.
My husband always
says the same thing to me.
Anyway, please don't be so hard on yourself. You are going through
a lot of
changes, emotionally and physically. Besides, when anything happens
to our
kids, we tend to automatically react strongly.
Best wishes,
Janine
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Date: Thu, 15 Oct 1998
21:49:59 EDT
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From: Yonstein@AOL.COM
Subject: Re: First time on!
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Welcome Collin and family to the list. We are the Krebs from New
York. Our
daughter Emily is 15 months and starting to say a couple of words here
and
there and imitating sounds, but I really can't help in the speech department.
Sorry.
Again, welcome. I am sure you will find this list as wonderful as I have.
Best wishes,
Janine
=========================================================================
Date: Thu, 15 Oct 1998
21:51:31 EDT
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From: Yonstein@AOL.COM
Subject: Re: Seth update:
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Dori,
Sorry to hear about Seth, but VERY glad to hear that he has turned a
corner.
That must have been a horrible time for you and for him. I am
praying that he
continues to improve with the antibiotics.
Best wishes,
Janine
=========================================================================
Date: Thu, 15 Oct 1998
23:43:37 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: (no subject)
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GREETINGS FROM LIZ !
I JUST WANT TO SAY THANK YOU TO THOSE WHO HAVE EMAILED ME. IF I HAVEN'T
RESPONDED TO YOU YET, I PROMISE YOU WILL GET ONE SOON! I WANT TO SEND
OUT A
BIG THANK YOU TO DON AND CATHY FOR CREATING THIS LIST AND OF COURSE
TEETER'S
PAGE!
IN CASE YOU HAVE JUST JOINED THIS LIST ALLOW ME TO INTRODUCE MYSELF AGAIN.
MY NAME IS LIZ SAYLAN I LIVE IN ROSWELL, GA. I AM ALMOST 30 YEARS OLD
AND HAVE
HAD APERT'S SINCE BIRTH. I AM THE YOUNGEST OF THREE GIRLS AND THE ONLY
ONE WHO
HAS APERT'S IN MY ENTIRE FAMILY.
I GRADUATED FROM HIGHSCHOOL 10 YEARS AGO, CURRENTLY WORK FULL-TIME FOR
PUBLIX SUPERMARKETS AT THE CUSTOMER SERVICE DESK. I LIVE AT HOME WITH
MY
MOTHER AND MY THREE CATS HUNTER, FROSTY & MONA! I HAVE HAD
NUMEROUS SUGERIES
ON MY HANDS AS WELL AS SOME CRANIOFACIAL WHICH I HAD DONE AT AGE 9.
I DRIVE MY OWN CAR, HAVE FULL USAGE OF MY HANDS, THE ONLY LIMITATIONS I
TRULY HAVE IS NOT BEING ABLE TO MAKE A FIST , SNAP MY FINGERS OR SOMETIMES
OPEN A JAR THAT IS TOO TIGHT. I DO NOT LIKE TO TO USE THE WORD
I CAN'T!! I
HAVE SPENT THE LAST 30 YEARS LIVING MY LIFE AS NORMAL AS POSSIBLE.
I LOOK FORWARD TO LEARNING MORE ABOUT EVERYONE, AS WELL AS BECOMING FRIENDS
FOR LIFE WITH EVERYONE HERE ON THE LIST. I HOPE I CAN NOT ONLY BE OF
HELP TO
ALL OF YOU BUT AN INSPIRATION TO YOUR CHILDREN WITH APERT'S . IF YOU
WOULD
LIKE TO WRITE ME OUTSIDE OF THIS LIST YOU CAN AT LSAYLAN@AOL.COM I
WILL GET
BACK TO YOU SO DON'T WORRY IF I DON'T RESPOND RIGHT AWAY O.K.
IN CLOSING I WANT TO LET THE FAMILIES THAT ARE GOING THROUGH ROUGH TIMES
KNOW THAT MY THOUGHTS & PRAYERS ARE WITH YOU ALL. UNTIL WE MEET
AGAIN I HOPE
YOU KNOW I AM THINKING OF EVERYONE NOT JUST THOSE HAVING A ROUGH TIME
RIGHT
NOW.
SINCERLY,
LIZ
=========================================================================
Date: Fri, 16 Oct 1998
09:51:50 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Listserv archives updated
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Hi everyone -
Thanks to all of you who have responded with your personal info -
keep'em coming! I updated the listserv archives yesterday through
the
second week of October. For those of you who are new to the list,
all
of our conversations are available at http://www.apert.org/archives.htm
and these are updated from time to time. Just click on the week
you
want to view - its all been converted to web pages.
Don
=========================================================================
Date: Fri, 16 Oct 1998
10:44:10 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: LSAYLAN@AOL.COM
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STACY THANK YOU FOR WELCOMING ME PLEASE TELL ME MORE ABOUT BROOKE AND
YOUR
FAMILY, I WILL BE GLAD TO HELP YOU IN ANY WAY I CAN. THIS IS A BRIEF
MESSAGE I
WILL WRITE MORE NEXT TIME
LIZ
=========================================================================
Date: Sat, 17 Oct 1998
10:30:54 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
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GOOD MORNING EVERYONE!
I THOUGHT I'D DROP IN AND SEE HOW EVERYONE IS DOING. I HOPE THAT YOU ALL
ARE
DOING FINE. I AM DOING GREAT NOW THAT I CAN REACH OTHERS WITH APERT'S
AND
THEIR FAMILIES. SINCE JOINING THE GROUP I HAVE LEARNED ALOT MORE ABOUT
APERT'S
THAT I DIDN'T HAVE ACCESS TO THROUGH THE LOCAL LIBRARY HERE.
PLEASE FEEL FREE TO SEND ME EMAIL I WILL RESPOND, JUST DON'T WORRY IF IT
TAKES ME AWHILE. I WILL BE SENDING DON&CATHY MY STORY & PICTURES
SO THAT THEY
CAN CREATE A PAGE FOR ME, YOU CAN LEARN MORE ABOUT ME AS WELL.
SO IN CLOSING I HOPE EVERYONE HAS A GREAT DAY AND THAT THE SUN SHINES
BRIGHTLY ON ALL OF YOU!
SINCERLY,
LIZ
=========================================================================
Date: Sun, 18 Oct 1998
10:57:13 -0700
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: LSAYLAN@AOL.COM
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Liz Saylan wrote:
>
> In a message dated 10/13/98 7:33:43 PM Pacific Daylight Time,
> macdonal@GOLDEN.NET writes:
>
> <<
> >>
> HEY THANKS FOR THE EMAIL!
> NO I HAVEN'T WATCHED FOOTBALL IN A LONG TIME AND I HAVE NEVER SEEN
CFL. TELL
> ME MORE ABOUT YOUR DAUGHTER AND WOULD YOU LIKE TO KNOW MORE ABOUT
ME
>
>
TALK TO YOU SOON!
>
LIZ
Sorry for the delay...our daughter is six and goes to kindergarden
again
this year..but this year it is all day. She wasn't quite ready
for
grade one yet. She has all of the operations to date for her age..and
tomorrow we see a physician to check when the next set of operations
are
due?
She is a happy child..with great sense of humour and love for anything
that any other six year old loves including tv, ice cream and swimming.
Thanks for your interest!
Robin MacDonald
=========================================================================
Date: Sun, 18 Oct 1998
19:29:04 -0500
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From: jamerman@UTI.COM
Subject: need to vent
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HI gang,
I just got back from Walmart and I'm still smokin'.
As I was at the deli, Nick was a few feet away. Some snack company had
a
snack display along with a big
toy periscope at the display. Nick was playing with the periscope
and I
happened to look as a little boy walked up to where Nick was.
He looked at Nick and said "I know you, You're that stupid kid".
I walked over to the little boy who was probably 8 years old and said.
"I
heard what you said and he is not stupid". He then denied saying
that. I
told him again that I heard him and asked where his mother was.
He started mumbling and waving his hands to show me he did't know where
she
was.
A few minutes later as we were looking for crackers I seen him with
his
mother.
He looked up and seen me too and seeing me made him real nervous.
I walked
up to his mother and asked if he was her little boy. She said Yes and
I
said. As you can see I have a special needs child and I just
overheard
your son calling him stupid. She was not very happy and I proceeded
to
explain to her son that it ws not Nick's fault that he was in special
education and that he looked just a little different than him
He just stood there with his lip stuck out with tears in his eyes.
Hopefully that kid learned to keep his rotten thoughts to himself next
time
because I really think he is going to be in trouble when he gets home.
This is the second time in two weeks that Nick has a rotton experience
with
this type of thing.
On oct. 3, we went to a family reunion in Tennessee. While Nick
and his
cousin, Sean, were playing on the trampoline, a little girl and a little
boy told Nick that because his hands were different that he could not
play
on the trampoline.
Sean and Nick came running over real upset and told me what had happened.
I marched over to the trampoline and as soon as the kids saw me coming
with
Nick and Sean in tow. they started in "we never said anything". Well,
there
was the guilt itself as I had not even said anything yet.
I went up to them and said "Come here. They looked scared to death
and I
repeated myself. "Come here"
They slowly inched over to me and I said to them. "What color
is my hair?
They both said Blonde. I said. That's right. I asked them, What color
is
your hair? They both said "brown".
Then I aked them. Why isn't your hair blonde like mine? The boy
said," I
was born like this" I said "Exactly". At that point, they
started
catching on.
I politely let them know that although we don't look alike does not
mean
that different is bad and that they hurt Nick's feelings by treating
them
like that. Needles to say, we had no more problems after that and
Nick and Sean continued to play on the tramoline with incident.
Thanks for letting me vent. I feel better already. Hopefully this
will be
my last battle for awhile.
Judy
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Date: Sun, 18 Oct 1998
19:35:48 -0500
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From: jamerman@UTI.COM
Subject: addition to needing to vent
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I forgot to mention that in the first incident that this little boy
goes to
Nick's school and knows that he is in a special education class.
The second incident, I said at the end "With incident and meant "without
incident"
Thanks again for listening.
Judy
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Date: Sun, 18 Oct 1998
21:04:03 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Febrile Convulsions
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Carol-
You had a very frightening experience and I'm sure it will take a while
to not
be affected by it. Especially since your 39 weeks pregnant.
Jonathan was
born at 38 weeks but by that time I was crying about everything.
I think
counseling is always a great thing to do when you are feeling so sad.
But
keep your chin up and get as much rest as you can now, you will certainly
need
it. Thank goodness Ashleigh is doing well now.
Brenda
Houston
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Date: Sun, 18 Oct 1998
21:18:02 EDT
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From: GSieb91515@AOL.COM
Subject: Re: First time on!
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Welcome Shirley, Larry and Collin-
We are the Siebert's (George, Brenda, Melissa and Jonathan) in Houston.
Jonathan is 22 months old and has had 5 surgeries to date with the
next
hand/ear tubes scheduled for 11/23. We too have had our cranial
surgeries in
Dallas and are extremely happy with the surgeons there. Our OT
had mentioned
having Jonathan's fingers slightly bent when he has them released.
However, I
didn't really think the surgeon's would do that. I would love
to hear more
about this. Our Jonathan is not really speaking yet either and
I'm a little
concerned even though he has all the prelanguage stuff. I'm hoping
the tubes
will help and have decided to quit my job and stay home so that I can
work
with him more in this area. I agree it is very hard not to do
for them when
they are struggling but I know it is in his best interest if I don't
intervene
too quickly. Welcome and we hope to hear from you more.
Brenda
Houston
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Date: Sun, 18 Oct 1998
21:36:59 EDT
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From: GSieb91515@AOL.COM
Subject: various
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To: Liz, Doug, Ondra and Asher-
Welcome, we are the Sieberts in Houston (George, Brenda, Melissa and
Jonathan). jonathan was born on 12/6/96 and has had 5 surgeries
to date.
Doug and Ondra, the first year is the toughest in my opinion so far,
with
getting all of the drs. appts. scheduled and figureing out who you
feel
comfortable with. Enjoy Asher as much as you can now, they grow
so fast. I
already miss those precious first months even though J is only 22 months
old.
LIZ, you are a great source of inspiration. It sounds like nothing
holds you
back and we appreciate your encouraging words.
Dori- I am so sorry to hear what a time you guys have been through.
What a
great relief that Seth is doing so much better and on the mend.
I know you
will be glad to get that distraction device out as soon as possible.
Please
know that we continue to pray for his continued recovery.
Also, please let
Stephanie know that we will have little Caroline in our prayers as
well for
her first surgery on 10/30.
Brenda
Houston
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Date: Sun, 18 Oct 1998
23:19:27 EDT
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From: NephiRose@AOL.COM
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Judy,
Go, girl! The world is hard enough as it is without our kids
having to deal
with that kind of destruction on their self esteem. Your son
needed that.
Hope I'll be just like that when my Sarah is around that age.
Thanks for
sharing it with us.
Belinda Vicars
(Utah)
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Date: Mon, 19 Oct 1998
02:16:40 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: memo from liz
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To Judy & the rest of the Parents of children with Apert's Syndrome
!
Briefly I want to share
some of my personal story with you, in relation to
what Judy & Nick , and or anyone else in the group has already
experienced
with today's society. First I'd like to let you know I was raised by
a single
parent(my mother),because my parent's divorced when I was just about
5 years
old. I was raised by my mother and when my mother was at work my sisters
both
took care of me.
It was hard on my mother
who was trying to raise three girls and at the same
time take me to all the doctor's appointments at the clinic, meanwhile
trying
to hold down a job all at the same time. You can imagine how hard this
was on
her, especially when I had to go into the hospital for surgery. When
my
sisters went off to college my mother had take care of me all alone,
except
when my sisters were home from college. My grandparents live in New
York and
they couldn't always come down to help her. My father lived out of
state and
wasn't apart of my life except by telephone on rare occassions.
So now you know that I was
raised by a single working parent who had alot to
take on with raising a child with Apert's. I have alot of gratitude
for Don &
the rest of the fathers who are very much apart of their children's
lives. I
am not bitter towards my father for not being apart of my life, but
if there
is anything I wish I could turn back the clock on, it would have been
to have
had a father who could be the wind beneath my wings along side my mother.
My
mother was truly the wind beneath my wings growing up, I was fortunate
enough
to have a loving family(entire immediate) who gave love and support.
When I think back to my
childhood, I was put into a handicap class because
the school system didn't want to put me into a regular class. They
thought I
belonged in a handicap class because I had a dissability therefore
classifying
me as handicap. My mother tried to fight the school system, but didn't
succeed. I spent three years in a handicap class, although I was a
slow
learner I honestly can say now that I don't think I needed to be in
that
class.
Yes I got the attention
I needed from the teacher's and had friends, but when
we moved away to another school district my life changed. My handicap
class
teacher help my mother get me into a regular class at my new school,
the only
downfall was that they had to hold me back in order to do so. I went
into the
3rd grade again instead of advancing to 4th like other kids my age
were.
Sometimes I look back and think about the plus's and minus's of having
to be
held back caused me.
I'm getting on a roll here,
but I don't want to bore you with my life story
right now. I want to let you know what helped me get through my youth
and
young adult life. First and for most love and support from my family
helped,
being told that no matter what anyone tells me I am really no different
than
they are. I may look different and act different but none the less
I am not
less than them. It was hard getting over all the teasing and being
made fun of
all the time. It was hard to make friends without having to worry if
the were
my friends because they felt sorry for me.
I became a strong willed
little girl who grew up as a tomboy, did all the
things little kids like to do. I eventually learned how to ignore the
kids who
thought it was funny to make fun of me. When my mother and I moved
again I
once again had to fight what I thought was a losing battle with the
other
kids. But then I learned how to be tough and not let them get the best
of me.
During p.e. in school I loved to play sports(kickball, baseball, dodge
ball)just to name a few games, it was during these times that I showed
the
other kids that I am strong and that I too could kick a ball far and
throw a
ball or even hit a ball with a bat. All these things I did by myself
I didn't
need anyone's help. I was constantly told by my mother not to let the
other
kids make me feel less than, that no matter how different I looked
to them
that I was just as normal as they were.
I kept reminding myself
of what my mother had always told me, I knew she was
right, because mom's knew best! When I reached the 8th grade all the
judgements came to an end and finally I could go to school with out
having my
daily dose of harrassment. I learned how to determine which kids were
real
friends and which ones were pretending to be my friend. I can remember
being
stared at when I would go shopping with my mother or having some little
kid
make fun of me, I remember how it hurt my feelings.
So what I would like to
express to all of you is this, if you teach your
child at an early age that they are normal even though they look different
and
that people who tease them or stare at them don't understand why they
are
different and that is why they feel the need to poke fun at someone
who is
different looking to them. Love them the same way you always have,
treat them
as normal as possible(I'm not saying you don't already do this). Give
them the
strength and courage to stand up to the people who think they have
the right
to be judgemental towards them. Let them know that if they stand up
tall and
show that person that they can't get the best of them that hopefully
the
person who is being rude will eventually stop.
I know it is painfull not
only for your children, but for all of you as well,
believe me I know!!!! But my advise to all of you is teach your children
to be
strong and give them the courage to overcome any obstacles that cross
their
paths, they too can survive as I have in the last 30 years. I know
you all
have a rough road ahead of you with society accepting your child who
has
apert's syndrome, if they can't accept that we are different that is
not our
problem now is it! Keep your chin up and remember your child feeds
off of your
strength and courage, help them build up their courage and become strong
unique individuals. Let them know they can do anything their little
heart
desires, never let anyone tell them they can't. I have made a promise
to
myself and would suggest this be a given to all my new little friends
and
older ones, never say the word's I can't because if you allow yourself
to
think you can't do something then your allowing other's to be better
than you.
No one is better than the
next, although we may have to find different ways
to do simple tasks we can do them sometimes better than someone who
is fully
capable of doing the same tasks. I am fast at ringing up customers
and
sometimes I am faster than some of my co-workers, isn't that interesting!
I
hope I haven't bored anyone, but most of all I hope I have helped in
some way
by sharing a little of my life with all of you. As I bring this long
email to
a close I would just like to add one last thing Encourage your children
to
dream and let them know that dreams really do come true! I know this
to be
true, because many of my dreams have come true. Having a computer now,
has
enabled me to for fill one of my dreams, which is to reach out to the
young
children of today who have apert's syndrome and their families. I want
to be a
source of support and share my experiences so that you can help your
children
live a normal life. I look forward to having lasting friendships with
all of
you and your children.
May god bless all of you
and your families! Remember you can either reach me
through this list or email me at LSAYLAN@AOL.COM If I don't respond
right
away, please don't get discouraged. Sometimes I may not always get
my mail on
a daily bases, that is why it may take me awhile to get back to all
who email
me. Thank you for allowing me to express my thoughts in this long letter.
Sincerly,
Liz
=========================================================================
Date: Mon, 19 Oct 1998
09:42:34 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: memo from liz
MIME-Version: 1.0
Content-Type: text/plain
Thank you, Liz, for taking the time to give us all this wonderful,
inspirational message.
Don
> -----Original Message-----
> From: Liz Saylan [SMTP:LSaylan@AOL.COM]
> Sent: Monday, October 19, 1998 2:17 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: memo from liz
>
>
=========================================================================
Date: Mon, 19 Oct 1998
08:31:38 -1000
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From: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: memo from liz
MIME-Version: 1.0
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Bravo, Liz, for your willingness to be so open and to
share your
experiences with us!!
Aloha,
Margaret Iucker
Joana Magno
=========================================================================
Date: Mon, 19 Oct 1998
15:29:55 -0500
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From: jamerman@UTI.COM
Subject: Re: memo from Liz
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Liz,
I would like to thank you for your response to my vent!
What happened is not an every day occurence, thank God but does happen.
The thing is, Nick really doesn't understand why these kids are so
cruel
sometimes. Even though he is eight years old he is still very
innocent
sometimes. His feelings get hurt but he also seems to take it
in stride.,
where I am the mother hen trying to protect my son from unneccesary
hurts
and it really makes me angry.
But even when I'm angry, I try to politely shame that person so they
can
understand a little more how people's feelings get hurt by their actions.
My son is not angel by all means but he does consider others feelings
except when he doesn't wasnt to share his toys. But we're working
on that.
It is so nice to have you on the listserv. You seem to be so open and
I
know you are truly an asset for all of us.
I am also going to be faxing Stephanie Tingley the letters concerning
little Caroline in a few hours so if anyone else would like to send
anything for her, you have roughly two hours.
Judy
=========================================================================
Date: Mon, 19 Oct 1998
18:33:45 EDT
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From: BBarn60368@AOL.COM
Subject: Re: memo from liz
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Dear Liz:
Thank-you so much for your memo. It was such an inspiration!
You are a
wonderful source of support and advice and I certainly appreciate anything
you
care to share. Please don't be concerned with your memos being
too long. It
is all such helpful information. I'm sure we all read your words
with the
same extreme interest. After all you are sharing information
so very helpful
to our little ones.
Again thank you so much,
Alice in Orlando.
=========================================================================
Date: Mon, 19 Oct 1998
15:29:49 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: memo from liz
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Liz,
I am Robyn Johnston mother to Brenna who is now 2 1/2 years old.
I call
her my little Plum for short. She doesn't have Aperts, but has
Crouzons
syndorme. I enjoy this list too because their are a lot of similarities
with the craniofacial aspect of her syndrome. I just wanted to
welcome you
here too and PLEASE don't ever feel as if you are boring us.
I have
learned so much from people like you who are willing to share their
experiences with us. You could write a short novel and I would
love it!
:-) I believe that by being a part of this wonderful internet
family I
have found a lot of answers to my hundreds of questions. <g>
:-) It is
also just nice to know that there are people out there who are willing
to
share their experiences and support each other through both good times
and
bad. Anyways, I appreciate your words of wisdom and encouragement.
Sincerely, Robyn J
from unseasonabley warm Eugene, OR
>
=========================================================================
Date: Mon, 19 Oct 1998
22:03:36 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: First time on!
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In a message dated 10/18/98 8:19:42 PM Central Daylight Time,
GSieb91515@AOL.COM writes:
<< Jonathan is 22 months old and has had 5 surgeries to date with
the next
hand/ear tubes scheduled for 11/23. >>
Hi there, it's Zoey's Mom....just wanted to say that Zoey's having her
next
hand surgery on NOvember 24th here in San ANtonio. Will be thinking
of
Jonathan down here.
Christina
SanANtonio
=========================================================================
Date: Tue, 20 Oct 1998
07:46:00 EDT
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From: Jenngram@AOL.COM
Subject: Re: First time on!
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Seems to be another month of surgeries...I guess every month seems to
be that
way...
Jordan is scheduled for his next finger release on 11-9...this one will
be the
left index....his right index did wonderfully...healed in less than
2 weeks,
and he has been picking up string and shoelaces with the new index
finger and
his thumb. He has wonderful movement.
Hope all is well.....Liz, I enjoy all your e-mails emmensley...they
provide
such insight as to the future, as well as some encouraging words of
wisdom....
Jenn(Tampa/St. Pete)
=========================================================================
Date: Tue, 20 Oct 1998
10:55:29 -0400
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From: George Starr
<daystar@IGLOU.COM>
Subject: Re: need to vent
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I admire the strength you have! That's all I can say!! Keep up the good
work!!
George Starr
-----Original Message-----
>HI gang,
>
>I just got back from Walmart and I'm still smokin'.
>
=========================================================================
Date: Tue, 20 Oct 1998
13:17:49 -0700
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Eye Muscle Surgery
MIME-Version: 1.0
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Hello everyone,
I took Martha to an Ophthalmologist yesterday for a six month follow
up
visit. Dr. Davis is concerned about Martha's eye muscles.
I told her
that Martha would have her mid-face advancement as early as eight
years
of age or when she's a teenager, depending on her growth. Dr.
D feels
this is too long to wait. She said Martha's eye muscles are very
tight
and that's why when Martha looks sideways without turning her head
she
gets "cross-eyed". She would like to operate on the eye muscle
to
release some of the tension.
Have you heard of this being done on other Apert Syndrome children?
Could I get your opinion on this?
Thanks.
Laura
Los Angeles, CA
=========================================================================
Date: Tue, 20 Oct 1998
16:30:44 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: This week
MIME-Version: 1.0
Content-Type: text/plain
Hi all -
I've really enjoyed hearing from so many of you this week, and look
forward to hearing from even more! I want you all to know I'm
looking
at each and every email you send and acting, slowly but surely, to
make
sure all of your pages are properly updated.
I'll be out of the office and at home Wednesday and Thursday (gum
surgery on ME - yuck) so I may not get a chance to respond until later
this week or even into next week. I'll be trying to make all
the
possible changes while I recuperate.
Take care and i'll be back soon -
Love to you all, Don
=========================================================================
Date: Tue, 20 Oct 1998
15:49:43 -0500
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Re: Eye Muscle Surgery
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Laura,
Nicholas had eye muscle surgery when he was 4, it helped tremendously..
we
saw such an immediate improvement.
Carol Graves
-----Original Message-----
From: Pulido, Laura <PulidoL@OR.CSMC.EDU>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, October 20, 1998 3:18 PM
Subject: Eye Muscle Surgery
>Hello everyone,
>
>I took Martha to an Ophthalmologist yesterday for a six month follow
up
>visit. Dr. Davis is concerned about Martha's eye muscles.
I told her
>that Martha would have her mid-face advancement as early as
eight years
>of age or when she's a teenager, depending on her growth. Dr.
D feels
>this is too long to wait. She said Martha's eye muscles are
very tight
>and that's why when Martha looks sideways without turning her head
she
>gets "cross-eyed". She would like to operate on the eye muscle
to
>release some of the tension.
>
>Have you heard of this being done on other Apert Syndrome children?
>Could I get your opinion on this?
>
>Thanks.
>Laura
>Los Angeles, CA
>
=========================================================================
Date: Tue, 20 Oct 1998
21:00:54 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Eye Muscle Surgery
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In a message dated 10/20/98 3:17:59 PM Central Daylight Time,
PulidoL@OR.CSMC.EDU writes:
<< She said Martha's eye muscles are very tight
and that's why when Martha looks sideways without turning her
head she
gets "cross-eyed". >>
Zoey's Mom here. Zoey does/did have something going on with here
eyes, but
her ophthamologist didn't suggest surgery, she just gave Zoey glasses.
Said
that Zoey was far-sighted and when trying to see something close-up
her eyes
crossed. Glasses seem to have done the trick. That's all
the knowledge I
have. Hope it helps.
Christina
San Antonio
=========================================================================
Date: Tue, 20 Oct 1998
21:53:45 EDT
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From: Yonstein@AOL.COM
Subject: Re: Surgeries
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Well, it sure is another month for surgeries. Emily is scheduled
for her very
first hand surgery November 4th. Yes, I am already starting to
get a little
nervous. It's a new doctor and a new hospital for us.
As far as the eye muscle, we did see a new doctor also for her eyes.
She
explained that with Aperts the eyes tend to go in a V pattern.
Emily is
always looking up so that her eyes can focus. She would like
to do surgery on
her within the next year. (She is 15 months now.) She explained
that it
could turn into amblyopia (where the brain can shut down on one side
if it
gets used to it that way) so that it won't know which is the correct
way to
see. She wants to do the surgery before this happens. Emily
also has
glasses, but they haven't seemed to help with this problem.
Liz, it's always nice to hear from you. We are trying to raise
Emily ( and
our son) with that philosophy, like the Little Engine that Could.
I think I
can, I think I can. Hopefully Emily will grow up to be as strong
as you.
Hope everyone else is doing well.
Best wishes,
Janine
=========================================================================
Date: Tue, 20 Oct 1998
21:15:49 -0500
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From: jamerman@UTI.COM
Subject: Re: surgeries
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Janine,
Is Emily's surgery to release the thumbs? If so, you will be amazed
at how
quickly she will adjust to them and it will be such a pleasure for
you to
see her using them in no time. It won't be long until she is using
them to
feed herself. I think that was one of our most exciting moments
as far as
the thumbs go, probably because it was one of the first things Nick
learned
to do. (It sure made it easier on every here too)
Laura,
Nick also had an eye surgery, I think he was two or three at the time.
It
was for the same reason as Emily's doctor wants to do hers. Always
looking
up to focus. But Nick does not wear glasses.
Judy
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Date: Tue, 20 Oct 1998
22:54:34 EDT
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From: NephiRose@AOL.COM
Subject: Re: Eye Muscle Surgery
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Sarah V. is is also far-sighted. Without glasses, she tends to
become cross
eyed.
Dr. Hoffman explained it like this, "She's far-sighted enought that
she'll
need glasses anyway. With the glasses on, though, it helps her
eyes relax so
that she doesn't have to focus so hard. When she concentrates
really hard to
focus, her eyes cross. The glasses help her eyes to relax enough
to focus.
She will need glasses all her life. However, in her teens, she
could be
trained to keep her eyes straight without glasses." Thought that
was
interesting. Didn't understand it until I saw him yesterday.
Belinda Vicars
=========================================================================
Date: Wed, 21 Oct 1998
08:05:20 EDT
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From: Jenngram@AOL.COM
Subject: Re: surgeries
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I have to say one of the most delightful things to come fromhand surgeries
is
the ability to hold a cup and feed oneself.....I can actually drive
home form
TArget and give Jordan his juice cup in the car and he can DRINK on
the
go...as opposed to having to totally stop everything and let him chug
away...It has made outings much easier and reduced stress levels immensely
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 21 Oct 1998
07:23:33 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: surgery cancelled
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Daryl's cranial surgery has been cancelled for Nov. 5. The only
other date
they have available is the week before christmas. We said no
way and will
just have to asorb the insurance turnover and do the surgery in the
new
year.
I am still reading all the
e-mails, but I have not responded much
lateyly. Things have been busy (crazy) here and I am in the process
of
trying to slow down my life. Hope everyone's surgeries go smoothly!
Denise Graham
=========================================================================
Date: Wed, 21 Oct 1998
11:20:13 -0400
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From: rhartley@DZIS.COM
Subject: HAND Questions. Rich & Karen
Hartley
Comments: To: APERT@LISTSER.AOL.COM
Mime-Version: 1.0
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Hi everyone, It's been some time. Welcome aboard to all
the new members. Our Andrew (Born 4/30/98) is going for
his pre-op today and has a cold so let's just hope. He is
scheduled for the finger release on both hands this Fri 10/23.
Andrew will have 4 fingers on both hands.
Q- Has anyone any information on Tissue expanders versus
skin grafts, or any papers written on this
subject.? What are
the advantages of either.
Q-Any info on irritation at the site of the skin graft with relation
to diaper irritation etc..
Q-Who wrote about Dr. David Chiu in NY Columbia Presbyterian
Hospital. Apparently he is able to separate
fused bones in the
hands.?
Any information on the above questions will be greatly appreciated.
Has anyone thought about putting together a package of written
information and websites that could be given to the parents of
new born Apert/crouzon (SP!) babies. Imagine how much this would
help parents who are still "in shock".? Well, just a thought.
Take care.
Your friends in Pennsylvania.
Rich & Karen Hartley
118 Hartranft Avenue
East Norriton,PA 19401
=========================================================================
Date: Wed, 21 Oct 1998
11:40:47 EDT
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: HAND Questions. Rich &
Karen Hartley
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I can't help w/ the tissue expander issue..Jordan had skin grafts and
they
have done beautifully, w/ hardly any scarring...although we are sticlers
for
beginning debridement ASAP as I have seen scar management be much more
difficult the longer you wait.
As far as diaper irritationa at the diaper site....we have had no problems
with this. They put a tegraderm dressing over the site (they stich
up his
groin area where the graft is taken, so it looks like an incision,
as opposed
to a huge open wound) and we keep it dry for a week to ten days....bathing
is
no fun, bue we make do.....most of the time the dressing will start
to peel
off on its own after a week or so, a few times we had to pull it off
ourselves, as we were approaching 2 weeks and I felt that it would
get
irriatated if on much longer. Its much easier to manage than the
fingers...that I promise!!!!!
Good luck w/ the upcoming surgey
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 21 Oct 1998
11:42:44 EDT
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safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Jenngram@AOL.COM
Subject: Re: surgery cancelled
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Sorry to hear Daryls surgery was cancelled...And I am w/ you...no surgeries
around holidays if it can be helped....After Jordans on the 9th...we
are
holding off on the last 2 finger releases until after the first of
the
year....
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 21 Oct 1998
14:09:50 -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
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: HAND Questions. Rich &
Karen Hartley
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Hello Rich and Karen. I can't help you any with tissue expanders;
Carmen
had the skin grafts. We did not have any trouble with the graft
site. The
doctor stitched the areas (one on each side for thumbs) with dissolvable
stitches and covered with steri-strips. The strips were supposed
to fall
off in a week; however, they did not. We pulled them off after
two weeks
and I was amazed at how well it had healed. Carmen just has a
small line
(like an incision) on each side. She has not seemed uncomfortable
with the
graft sites and we did not have any trouble with infection, etc.
Now
managing the casts, wraps, etc.......THAT's ANOTHER STORY!!!!
Robin Hill
----------
> From: rhartley@DZIS.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: HAND Questions. Rich & Karen Hartley
> Date: Wednesday, October 21, 1998 11:20 AM
>
> Hi everyone, It's been some time. Welcome aboard to all
> the new members. Our Andrew (Born 4/30/98) is going for
> his pre-op today and has a cold so let's just hope. He is
> scheduled for the finger release on both hands this Fri 10/23.
> Andrew will have 4 fingers on both hands.
>
> Q- Has anyone any information on Tissue expanders versus
> skin grafts, or any papers written
on this subject.? What are
> the advantages of either.
>
> Q-Any info on irritation at the site of the skin graft with relation
> to diaper irritation etc..
>
> Q-Who wrote about Dr. David Chiu in NY Columbia Presbyterian
> Hospital. Apparently he is able to
separate fused bones in the
> hands.?
>
> Any information on the above questions will be greatly appreciated.
>
> Has anyone thought about putting together a package of written
> information and websites that could be given to the parents of
> new born Apert/crouzon (SP!) babies. Imagine how much this would
> help parents who are still "in shock".? Well, just a thought.
>
> Take care.
> Your friends in Pennsylvania.
> Rich & Karen Hartley
> 118 Hartranft Avenue
> East Norriton,PA 19401
=========================================================================
Date: Wed, 21 Oct 1998
14:24:32 -0400
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safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Eye Muscle Surgery
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Dear Laura:
Hi there, we are the Bradleys and we live in Algonquin, IL. Our daughter
Michelle is 71/2 years old and when she was 3 or 4 years old, she has
an
eye surgery for strabismus. She did too look sideways and she was running
into walls. That help a lot. I hope this info helps you.
Martha
Algonquin, IL
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Date: Fri, 21 Aug 1998
04: