Dear Christina:
I know, so well, how you feel. I know the darkness of depression
and the
helplessness that it creates in our minds. I want you to know
that I am
praying for you and don't let it get the best of you. Keep making
moves and
don't let it debilitate you. Your doctor can help, and sometimes,
as Mommys
of kids that have so many needs, we tend to shove our needs to the
back
burner. Don't forget the fact that the best care you can give
Zoey is only
obtainable after you have taken the best care of yourself.
I also know, so well, how you feel with the surgery being postponed.
When
Shirley went in for her very first surgery, we were scared to death.
We went
through the whole pre-op process, they put her to sleep, we went to
wait,
worry, and pray. After about an hour, we went to the hospital
cafeteria.
While we were there, we were called to the phone and asked to come
to the
surgery waiting room by Shirley's doctors. My whole insides sunk
to the
floor! I knew it was too soon for the surgery to be over.
All I could think
was that we had lost her.
As it turned out, they had tried, for over an hour, to run her lines
and just
could not get into an artery. All this was after the surgery
had been
postponed, once before, because Shirley was sick the first time it
was
scheduled. It's terrible! You go through all the emotions
of preparing to
hand your precious baby over to someone you hardly know, to take her
whole
head apart or her hands or whatever, not to mention being brought very
close
to death by the anesthesiologist, and then, after all that, you get
told that
it is not going to happen today. And you get to start going through
the
whole process all over again!
Just know that you are not alone, we all care, and I will pray for you.
Much love,
Alice in Orlando, Fl.
=========================================================================
Date: Sat, 15 May 1999
10:10:19 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: surgery
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Hi!
Sorry, that I didn't write in Monday, about our news. It was
a very
emotional day. Courtney had to be sedated for her CT scan, but
she was
asleep 20 before they began the testing. Then, when we took her in
the
sedation room ( where u rock the child to sleep in a dark room), rocked
her to sleep,the nurse burst through the dor and says loudly "is she
asleep"? So, Courtney sits upright and eyes wide open looking
around. I
was so mad, I was in tears! However, we received some good news!
We
don't need a shunt! YEAH! I was so relieved. We will
go ahead with
surgery on Wednesday for Courtney's cleft palate. Surgery or
her second
bi-canthel advancement will be June 30th. This Myrtle Beach vacation
couldn't have come at a better time! I am so excited! I
can't wait to
meet everyone!
Mechelle
=========================================================================
Date: Sat, 15 May 1999
11:08:26 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Content-Type: Text/Plain; Charset=US-ASCII
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CONGRATULATIONS!
To the new arrivals! Also, to Cristy and Clyde (Slick)!
Christine, I have never been through a canceled surgery, May God be
with
you in this time of need. He has answered so many of my prayers!
Our
prayers are with you.
Mechelle
=========================================================================
Date: Sat, 15 May 1999
12:27:24 EDT
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From: GSieb91515@AOL.COM
Subject: Re: being out of sight, shoes,
etc
MIME-Version: 1.0
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Marianne--
Sorry to hear you guys have been having a rough time. Isn't it
amazing how
wonderful our kids are through even the bad times. They really
should be a
lesson to all of us. Hope everyone is doing better and that Evan's
shunt
checkup is A-ok.
Brenda
Houston
=========================================================================
Date: Sat, 15 May 1999
16:08:19 EDT
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From: Marjorie Harmon
<MHTeach102@AOL.COM>
Subject: Re: being out of sight, shoes,
etc
MIME-Version: 1.0
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Howdy from the Ranch
I want to thank everyone for their great support for me and my family
over
the past week. And thank you Don for putting BJ's page back up, it
was nice
to remember happier times. I am doing better this week and i hope everything
is going well with each of you.
I do have a question, does anyone know of an agency or group we can
donate
BJ's old equipment to. We have 2 hospital beds, an electric wheelchair,
ventalator, as well as other things. I think BJ would like to see them
go to
someone who could get some use out of them and I can't bear to sale
them.
Once again thanks for the support, it really does mean more than you
can ever
know. One more thing we planted a new oak tree this past weekend as
a tribute
to BJ.
Loves and Hugs,
The Harmon's
=========================================================================
Date: Sat, 15 May 1999
17:13:29 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: being out of sight, shoes,
etc
MIME-Version: 1.0
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Marjorie,
Have you considered your local Easter Seal, they usually have
alot of
special needs children and adults for that matter that do not have
alot of
extra money.
what you are going to do is such a selfless thing to do. I really
admire
you.
I would also like to thank you for letting us all remember B.J. by putting
his page back up and for keeping in touch with all of us!!
Judy
----- Original Message -----
From: Marjorie Harmon <MHTeach102@AOL.COM>
To: <APERT@LISTSERV.AOL.COM>
Sent: Saturday, May 15, 1999 3:08 PM
Subject: Re: being out of sight, shoes, etc
> Howdy from the Ranch
>
> I want to thank everyone for their great support for me and my family
over
> the past week. And thank you Don for putting BJ's page back up, it
was
nice
> to remember happier times. I am doing better this week and i hope
everything
> is going well with each of you.
>
> I do have a question, does anyone know of an agency or group we can
donate
> BJ's old equipment to. We have 2 hospital beds, an electric wheelchair,
> ventalator, as well as other things. I think BJ would like to see
them go
to
> someone who could get some use out of them and I can't bear to sale
them.
>
> Once again thanks for the support, it really does mean more than
you can
ever
> know. One more thing we planted a new oak tree this past weekend
as a
tribute
> to BJ.
>
> Loves and Hugs,
> The Harmon's
>
=========================================================================
Date: Sun, 16 May 1999
11:33:09 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Been there and done that.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dear Alice. You wrote exactly how it felt for us too. Evajessie
has had
two cancellations. The first one for her orbital osteotomy and
we had
prepped for months. But there had been some sort of horrible
accident just
beofre and all the ICU beds were taken and they had no more so our
surgery
was postponed. We found that out when we got to the opsital that
morning at
six oclock to take her to the OR. It was a hit to stomach.
I couldn't
breathe or think clearly.
Christina, Alice is right on here. You do need to take good care
of you.
it's hard to climb out of the black hole your mind sinks into
when things
are out of your control elsewhere. But the best thing to do is
keep moving.
Going through the motions if you have to just to keep going.
And
occasionally, make yourself a little treat at the end of the day
-- I like
a pot of tea myself -- and then just stop for a few minutes and savour
the
taste or the aroma or any small thing that can bring you some relaxation.
Zoey and you have been through so much. I hope she's feeling better
soon
and that you can get through the surgery soon and get it behind you.
you
have more than enough on your plate. Is there anyone who can
help out a bit
at home for you?
TAke good care of you so you can take care of your girls.
Pat, mom to the Peach
=========================================================================
Date: Sun, 16 May 1999
23:16:47 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: surgery
MIME-Version: 1.0
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Mechelle,
I wish your daughter luck
with the palate surgery. I would have had
the same reaction as you. That nurse needs not to be in a children's
hospital. I had a nurse like her when I had my surgery she bardged
in am
demanded I do what she said. I was trying to sleep prior to my
jaw surgery
and semi-sedated. Needless to say I refused and we faught.
I won and she
was not thrilled. Eventhough I was an adult in a children's hospital,
I
stood my ground and the girl in the bed next to me was in shock.
She was
there for a day or two before me and hinted that she was not a very
nice
person. To make this short and sweet, the medical personel needs
to keep the
fears of children and their parents in the fore front. They need
to
understand that it is not an easy task to keep a child calm when they
are in
a hospital. Mary, Fl.
=========================================================================
Date: Mon, 17 May 1999
05:41:28 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Andrea?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Has anyone heard from Andrea Gartner? I thought that she was scheduled
for mid-face advancement surgery in Miami on May 5th.
Dori
=========================================================================
Date: Mon, 17 May 1999
08:00:05 -0400
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Andrea?
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Dori,
I haven't heard anything and was thinking that exact same thing.
I hope
everything is going well with her. (no cancellations) I'm
sure she will
pop up when she gets a chance. Do you know her e-mail address?
Lynn
Dora Jefferson wrote:
> Has anyone heard from Andrea Gartner? I thought that she was
scheduled
> for mid-face advancement surgery in Miami on May 5th.
>
> Dori
=========================================================================
Date: Mon, 17 May 1999
08:14:49 -0400
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: A little something!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hello everyone,
I read something in my American Baby magazine that I wanted to share
with all of you.
MOTHER by: Rachel Snyder (mom in CO)
Just one look, and its clear you're a mother.
Your cheeks have been
stained with a mother's tears, and your baby knows the sweet delight
of
a mother's kiss. You move like a mother, standing in the grocery-store
line and gently rocking side to side. You kneel down in the grass
to
shade your baby from the sun.
You use a mother's language, radiating pride and
joy as you tell
others of your baby's first word, first step, first tooth. You
have a
mother's eyes, watching your little one grow more beautiful minute
by
minute. And, of course, you also have a mother's touch, caressing
your
baby's skin and soothing his baby fears.
You begin your day with a mother's prayer and end
it with a mother's
dreams. You know there's no love like a mother's love, and no heart
like
the heart of a mother. From head to toe, every day of the year,
you're
a mother, you're a woman. You're you.
Hope you all enjoyed that.
Lynn Thornquist
=========================================================================
Date: Mon, 17 May 1999
08:49:15 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Hello! It's been a
long time!
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Christina:
Know how you are feeling.
Hang in there! There really is a light at
the end of the tunnel.
Joni
Mom of Joseph, 6-years-old and
doing great (and he has been
through more than 26 surgeries)
=========================================================================
Date: Mon, 17 May 1999
08:06:07 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Andrea?
MIME-Version: 1.0
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Dori,
According to the chat room calendar, it is the 28th.
----- Original Message -----
From: Dora Jefferson <dajeff@SIU.EDU>
To: <APERT@LISTSERV.AOL.COM>
Sent: Monday, May 17, 1999 5:41 AM
Subject: Re: Andrea?
> Has anyone heard from Andrea Gartner? I thought that she was
scheduled
> for mid-face advancement surgery in Miami on May 5th.
>
> Dori
>
=========================================================================
Date: Mon, 17 May 1999
11:44:24 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: No Subject
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Mechelle,
Is this your new address? Glad to hear Courtney didn't need a
shunt. We will
be thinking of you all on Wednesday.
Love to all,
Cristy and Carlee
=========================================================================
Date: Mon, 17 May 1999
12:29:51 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Andrea?
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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NO I HAVEN'T HEARD FROM HER AND SHE IS ON A LOT I FORGOT THE DATE OF
HER
SURGERY .I SURE HOPE SHE IS DOING OK. ANDREA IF YOU READ THIS WRITE
US WE ARE
WORRIED ABOUT YOU. MARILYN
=========================================================================
Date: Mon, 17 May 1999
19:26:39 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: latex allergies
MIME-Version: 1.0
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Hello all
I was just wondering if any other kids/people out there have
developed a
latex allergy. Some blood work Jacob just had done for allergy
testing
showed he is allergic to eggs and showed a latex allergy (just one
more
thing to add to the list!!!). I suspected the egg allergy and
even
considered the latex allergy after a few incidents recently.
We will meet
with another allergist to discuss the latex allergy and what all it
will
mean avoiding. If anyone has any info on the subject, please
let me know.
Of course my first statement to the Doctor was to red flag his chart!!!
Still up in the air on the hand infection issue too. Thanks for
all the
thoughts and prayers. Hope everyone else is well and getting
ready for
summer.
Take care
Colleen Jones and gang
coljones@ptdprolog.net
=========================================================================
Date: Mon, 17 May 1999
20:31:08 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: down
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hi everyone.
I've been "out of it lately". Just don't have the umph to get up and
go.
I forgot the person's name that said she was feeling depressed.
I'm in
the same boat for different reasons. I have an appointment to
see my
doctor this week. I want to sleep a lot and have no energy to
fix decent
meals, which is like a vicious circle. I'm lacking the energy
I need
from food, but don't have the energy to cook anything. Please
pray.
Joanne
=========================================================================
Date: Mon, 17 May 1999
21:22:14 -0400
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Andrea
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_00AF_01BEA0AB.553F0DC0"
This is a multi-part message in MIME format.
------=_NextPart_000_00AF_01BEA0AB.553F0DC0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi guys,
I have been reading the postings daily. My midface advancement
surgery =
is next Thursday the 27th. I'm a little nervous about it but
not that =
much. (That will probably change next week) I keep telling
myself I'll =
be in good hands both in the operating room and above. The only
thing =
Im nervous about is going under and coming up. It's not fun.
I'll then =
be in the hospital for 3-5 days, depending on how fast I recover.
It's =
going to be the first hospital stay I can remember.
I have received some wonderful pictures. I'm putting them on
a =
bullentin board in my room. I will be sending mine out after
the =
surgery. I'm also going to update and create my page that will
include =
baby pictures and a graduation picture. I graduated from Edison
=
Community College with an Associate of Arts degree April 30th.
I just =
got one word to say to that. Finally! Now in August, I'm
off to =
Florida Gulf Coast University for my bachelor's in psychology.
I've =
actually going into Child Life Therapy. I'll also be living on
campus, =
even though home is an hour away. I need a more active social
life. =
It's gonna be a great experiance.
To all others having surgery, best of luck
To those who are recovering, I hope you have a quick and happy recovery.
To all those going to Myrtle Beach, have fun! I would've came
if I =
didn't have this surgery. Next year, whereever it is, count me
in!
With Love,
Andrea
------=_NextPart_000_00AF_01BEA0AB.553F0DC0
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 guys,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I have been reading the postings
=
daily. =20
</FONT><FONT color=3D#000000 size=3D2>My midface advancement
surgery is =
next=20
Thursday the 27th. I'm a little nervous about it but not
that =
much. =20
(That will probably change next week) I keep telling myself
I'll =
be in=20
good hands both in the operating room and above. The only
thing Im =
nervous=20
about is going under and coming up. It's not fun.
I'll then =
be in=20
the hospital for 3-5 days, depending on how fast I recover.
It's =
going to=20
be the first hospital stay I can remember.</FONT></DIV>
<DIV><FONT size=3D2>I have received some wonderful pictures.
I'm =
putting=20
them on a bullentin board in my room. I will be sending mine
out =
after the=20
surgery. I'm also going to update and create my page that
will =
include=20
baby pictures and a graduation picture. I graduated from
Edison =
Community=20
College with an Associate of Arts degree April 30th. I just
got =
one word=20
to say to that. Finally! Now in August, I'm off
to Florida =
Gulf=20
Coast University for my bachelor's in psychology. I've actually
=
going into=20
Child Life Therapy. I'll also be living on campus, even though
=
home is an=20
hour away. I need a more active social life. It's
gonna be a =
great=20
experiance.</FONT></DIV>
<DIV><FONT size=3D2>To all others having surgery, best of =
luck</FONT></DIV>
<DIV><FONT size=3D2>To those who are recovering, I hope you have
a quick =
and happy=20
recovery.</FONT></DIV>
<DIV><FONT size=3D2>To all those going to Myrtle Beach, have
fun! =
I would've=20
came if I didn't have this surgery. Next year, whereever
it is, =
count me=20
in!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>With Love,</FONT></DIV>
<DIV><FONT size=3D2>Andrea</FONT></DIV></BODY></HTML>
------=_NextPart_000_00AF_01BEA0AB.553F0DC0--
=========================================================================
Date: Mon, 17 May 1999
22:41:58 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Andrea
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi STRANGER GLAD TO HEAR FROM YOU, I GUESS YOU'VE BEEN BUSY WITH SCHOOL
AND
ALL I'M VERY PROUD OF YOU AS I KNOW YOUR PARENTS ARE, I'LL BE PRAYING
ABOUT
YOUR SURGERY. YOU LET US KNOW HOW YOU'RE DOING AS SOON AS YOU CAN.
WHAT IS
THE ADDRESS OF THE HOSPITAL YOU ARE GOING TO BE IN? TAKE CARE MARILYN
=========================================================================
Date: Mon, 17 May 1999
22:43:28 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: down
In-Reply-To: <19990517.203115.-78081.2.chanan8@juno.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> I've been "out of it lately". Just don't have the umph to get up and
go.
> I forgot the person's name that said she was feeling depressed.
I'm in
> the same boat for different reasons. I have an appointment
to see my
> doctor this week. I want to sleep a lot and have no energy
to fix decent
> meals, which is like a vicious circle. I'm lacking the energy
I need
> from food, but don't have the energy to cook anything. Please
pray.
I hope this is something simple, like
anemia, that you can get
fixed pretty quickly and be back to your usual self. I'll definitely
pray for you.
Judy
=========================================================================
Date: Mon, 17 May 1999
22:43:28 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: latex allergies
In-Reply-To: <199905180019.UAA03910@listserv.aol.com>
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> I was just wondering if any other kids/people out there have
developed a
> latex allergy. Some blood work Jacob just had done for allergy
testing
> showed he is allergic to eggs and showed a latex allergy (just one
more
> thing to add to the list!!!).
I have skin reactions to latex -- on the job
exposure. ALL
Apert kids are high risk for latex allergies. Many hospitals
are
recognizing that people with chronic health problems (especially
those needing multiple surgeries) are likely to become sensitized.
More and more are going to latex-free environments.
It's a good idea to discuss this with your children's docs
and
nurses. Ask them to minimize exposure if their institution isn't
latex-free yet.
Judy
=========================================================================
Date: Tue, 18 May 1999
15:39:20 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Courtney had to be sedated for her CT scan, but she was
>asleep 20 before they began the testing. Then, when we took her in
the
>sedation room ( where u rock the child to sleep in a dark room), rocked
>her to sleep,the nurse burst through the dor and says loudly "is she
>asleep"?
Maybe this is standard international technique to test if they are actually asleep so they will sleep through the procedure. :-)
Wonderful news about not needing a shunt. The possibility of hydrocephalus and shunts is rather scarey isn't it. Early on with Amy we received a copy of the paediatrician's letter to her GP and he talked about her having hydrocephalus. This puzzled us as noone had mentioned it before. On checking we were advised the typist had left out the word "no" before hydrocephalus.
Makes you wonder...
Keep smiling
Ann
NZ
=========================================================================
Date: Tue, 18 May 1999
02:47:01 EDT
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Sender: Information exchange and
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: MRI & Cleft Palates
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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I just wanted to pass on something that happened to us.
When we went to
have a MRI of Samantha's head I was concentrating mainly on keeping
her calm.
I didn't pay much attention to the nurse who was putting the
medicine in her
mouth or the situation. After she put it in, my husband said "shouldn't
she
be upright with her cleft palate?" The nurse said she should
but didn't
realize she had one. If your child has a cleft palate make
sure that they
are noting this in dark bold letters. We also now will
make sure that it's
in her chart and everyone concerned knows during her surgeries.
Samantha has
almost choaked from too much drool while on her back, so putting medicine
in
especially if she is upset could be dangerous.
We loved receiving our pictures from the Sears, Tingley's and Graham's.
All
are so cute. I think this photo exchange is so wonderful.
Especially when
I read about a child and by having the picture I feel I know them really
well. While I have thought every child on the listserv looks
like my
daughter Samantha, we were blown away by Caroline Tingley's picture.
My
husband and son didn't just think she looked like our daughter they
thought
it was Samantha.
My prayers and thoughts to the mother's who are feeling down this week.
Maybe it's God's way of slowly us down a little and also to let us
review
what's been going on. It's really easy to ignore the emotional
parts of this
and just try to be only brave and strong for the chidlren.
But I think that
the sadness and anger stays buried and doesn't go away and comes out
a little
through exhaustion and down days. I don't know about anyone else,
but I know
I'm still not sure how I'm suppose to act. I don't
know if I'm suppose to
tell my fears and sad incidents. So I walk around and just try
to sound
logical about the syndrome and I guess brave or strong.
At other times I
really just want to talk about regular mommy and baby things.
Sometimes I'm
sick to death about talking about her head and fingers only.
I want to
really talk about her eatting solids and scooting across the floor.
But
people usually correct me and say "No I meant about her upcoming surgeries."
That's where a support group like this is important a safe haven to
remove
the masks we wear at other times. Even if it's just the freedom
to say I'm a
little depressed today.
Love, Lisa Guyette
Mother of Samantha Guyette 6 months
=========================================================================
Date: Tue, 18 May 1999
06:24:16 -0500
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Sender: Information exchange and
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Andrea
MIME-Version: 1.0
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Andrea, Good to hear from you. You will be in our prayers and
thoughts.
Congratulations on receiving your associates degree. I just finished
up
my semester, so I know how busy you have been.
Well, I am just kicking myself. During Seth's surgery to remove
the
distracters I asked the ENT to remove the tubes (grommets) because
he
had had the right one since he was 9 months old and it kept getting
infected at the sight. Now, Seth's ears are driving him crazy,
he bats
at them constantly. He is taking an antibiotic but it really
hasn't
helped. I feel like Rosana Rosana Dana, "if it isn't one thing
it's
another".
Warmly, Dori
=========================================================================
Date: Tue, 18 May 1999
07:49:56 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: latex allergies
MIME-version: 1.0
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Content-transfer-encoding: 7bit
Colleen:
My Joseph has SEVERE allergies
to eggs, but as far as I know has never
had any problems with latex. We are getting ready to have him
re-tested, because we think he has developed more allergies since the
first testing (when he was 1 1/2 years old). I know what you
mean about
adding one more thing to the list. Our list is now quite long!
Praying that the infection
clears up.
Joni Stephens
Mom of Joseph (age 6)
=========================================================================
Date: Tue, 18 May 1999
07:51:17 -0400
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Sender: Information exchange and
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: down
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Joanne:
I'm praying for you.
Joni
=========================================================================
Date: Tue, 18 May 1999
08:17:19 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Bart & Karla
Kenton <kenton@MAILHOST.DAILYNEWS.NET>
Subject: Re: Andrea
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_000C_01BEA106.D8BA0D20"
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-----Original Message-----
From: Andrea Gartner <agartner@PEGANET.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, May 17, 1999 9:32 PM
Subject: Re: Andrea
=20
=20
Hi guys,
=20
I have been reading the postings daily. My
midface advancement =
surgery is next Thursday the 27th. I'm a little nervous about
it but =
not that much. (That will probably change next week) I
keep telling =
myself I'll be in good hands both in the operating room and above.
The =
only thing Im nervous about is going under and coming up. It's
not fun. =
I'll then be in the hospital for 3-5 days, depending on how fast
I =
recover. It's going to be the first hospital stay I can remember.
I have received some wonderful pictures. I'm
putting them on a =
bullentin board in my room. I will be sending mine out after
the =
surgery. I'm also going to update and create my page that will
include =
baby pictures and a graduation picture. I graduated from Edison
=
Community College with an Associate of Arts degree April 30th.
I just =
got one word to say to that. Finally! Now in August, I'm
off to =
Florida Gulf Coast University for my bachelor's in psychology.
I've =
actually going into Child Life Therapy. I'll also be living on
campus, =
even though home is an hour away. I need a more active social
life. =
It's gonna be a great experiance.
To all others having surgery, best of luck
To those who are recovering, I hope you have a quick
and happy =
recovery.
To all those going to Myrtle Beach, have fun!
I would've came if I =
didn't have this surgery. Next year, whereever it is, count me
in!
=20
With Love,
Andrea
------=_NextPart_000_000C_01BEA106.D8BA0D20
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>Andrea Gartner <<A=20
=
href=3D"mailto:agartner@PEGANET.NET">agartner@PEGANET.NET</A>><BR><B>T=
o:=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Monday, May 17, 1999 9:32 PM<BR><B>Subject:
</B>Re:=20
Andrea<BR><BR></DIV></FONT>
<DIV><FONT color=3D#000000 size=3D2>Hi guys,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I have
been reading the postings =
daily. </FONT><FONT color=3D#000000
size=3D2>My midface =
advancement=20
surgery is next Thursday the 27th. I'm
a little nervous about =
it but=20
not that much. (That will probably change
next week) I =
keep=20
telling myself I'll be in good hands both in the
operating room and=20
above. The only thing Im nervous about
is going under and =
coming=20
up. It's not fun. I'll then
be in the hospital for 3-5 =
days,=20
depending on how fast I recover. It's
going to be the first =
hospital=20
stay I can remember.</FONT></DIV>
<DIV><FONT size=3D2>I have received some wonderful
pictures. =
I'm putting=20
them on a bullentin board in my room.
I will be sending mine =
out after=20
the surgery. I'm also going to update
and create my page that =
will=20
include baby pictures and a graduation picture.
I graduated =
from=20
Edison Community College with an Associate of Arts
degree April =
30th. =20
I just got one word to say to that. Finally!
Now in =
August, I'm=20
off to Florida Gulf Coast University for my bachelor's
in =
psychology. =20
I've actually going into Child Life Therapy.
I'll also be =
living on=20
campus, even though home is an hour away.
I need a more active =
social=20
life. It's gonna be a great experiance.</FONT></DIV>
<DIV><FONT size=3D2>To all others having surgery,
best of =
luck</FONT></DIV>
<DIV><FONT size=3D2>To those who are recovering,
I hope you have a =
quick and=20
happy recovery.</FONT></DIV>
<DIV><FONT size=3D2>To all those going to
Myrtle Beach, have =
fun! I=20
would've came if I didn't have this surgery.
Next year, =
whereever it=20
is, count me in!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>With Love,</FONT></DIV>
<DIV><FONT size=3D2>Andrea</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_000C_01BEA106.D8BA0D20--
=========================================================================
Date: Tue, 18 May 1999
09:10:03 EDT
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From: Yonstein@AOL.COM
Subject: Re: Andrea
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
CONGRATULATIONS on your Graduation. It's quite an accomplishment.
Hope all is going well.
Janine
=========================================================================
Date: Tue, 18 May 1999
10:12:27 -0400
Reply-To: Information exchange and Internet
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Re: latex allergies
MIME-Version: 1.0
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Alex (9years old) was identified as having a latex allergy several years
ago
although he has never been tested for this by an allergist, because
they say
if you are truly allergic to latex the test is dangerous. We first
noticed
it when he was about 4 years old when he was playing with a balloon.
He
started sneezing and coughing and his eyes started to swell. Another
time,
he got hold of a Koosh ball and the same thing happened. Then at the
orthodontist's office the nurse touched his neck with a latex glove
and he
got a rach almost immediately! It was the orthodontist who told us
to notify
everyone that he is sensitive/allergic to latex and get it put on all
of his
records. At first we were overcautious with things like rubber bands
and
erasers, which have latex in them. But we soon learned that Alex can
be
around latex things as long as he doesn't touch them and them touch
his
face. If he touches a latex balloon nothing happens if he washes his
hands
right afterward. He does get a latex free surgical environment for
his
surgeries. He has been lucky so far to not have had any worse reactions.
Alex has learned to be a good self-advocate. Whenever we go to a doctor's
office, he notifies them immediately that he is allergic to latex and
watches carefully to make sure they put on non-latex gloves!
Amy Irvin
-----Original Message-----
From: Colleen Jones <coljones@PTDPROLOG.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, May 17, 1999 8:16 PM
Subject: latex allergies
>Hello all
> I was just wondering if any other kids/people out there have developed
a
>latex allergy. Some blood work Jacob just had done for allergy
testing
>showed he is allergic to eggs and showed a latex allergy (just one
more
>thing to add to the list!!!). I suspected the egg allergy and
even
>considered the latex allergy after a few incidents recently.
We will meet
>with another allergist to discuss the latex allergy and what all it
will
>mean avoiding. If anyone has any info on the subject, please
let me know.
>Of course my first statement to the Doctor was to red flag his chart!!!
>Still up in the air on the hand infection issue too. Thanks
for all the
>thoughts and prayers. Hope everyone else is well and getting
ready for
>summer.
>Take care
>Colleen Jones and gang
>coljones@ptdprolog.net
>
=========================================================================
Date: Tue, 18 May 1999
10:43:09 -0700
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Latex allergy
MIME-Version: 1.0
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Roxanne also has a latex allergy. While it is not life-threatening,
she =
does develop a rash/swollen with direct contact. Benedryl works
great! =
Her dentist and orthodontist use vinyl gloves.
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<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D4>Roxanne also has a latex allergy.
While it is =
not=20
life-threatening, she does develop a rash/swollen with direct =
contact. =20
Benedryl works great! Her dentist and orthodontist use vinyl=20
gloves.</FONT></DIV></BODY></HTML>
------=_NextPart_000_0015_01BEA11B.384E5840--
=========================================================================
Date: Tue, 18 May 1999
14:21:41 EDT
Reply-To: Information exchange and Internet
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From: Yonstein@AOL.COM
Subject: Re: Hello! It's been a
long time!
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Dear Christina:
Sorry to hear Zoey is sick and surgery was cancelled. I do also
know how
that feels. Emily's last surgery on 4-30 was cancelled because
she had a
cold. Now we are scheduled for this Friday, 5-21, and I am keeping
my
fingers crossed.
As for you, please do try to keep busy and just know that maybe her
little
body wasn't ready for the surgery and she needed more time. That's
what
everyone told me about Emily. It's quite a letdown, though, isn't
it.
Take some special time for yourself.
Best wishes,
Janine
=========================================================================
Date: Tue, 18 May 1999
14:27:21 EDT
Reply-To: Information exchange and Internet
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From: Yonstein@AOL.COM
Subject: Re: latex allergies
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This is a very interesting topic. In February when Emily had a
hand surgery,
the anesthes. resident asked us if Emily was latex allergic.
He said there
was a red flag on her chart. That was the first time I had ever
heard of it.
Not that I knew of. They did the surgery as if she was
allergic.
I was told that the resident pulled the wrong chart at the OR and had
the
wrong child.
Good thing, because that was news to me.
Would the symptoms be a rash or something more severe?
Janine
=========================================================================
Date: Tue, 18 May 1999
17:31:33 EDT
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From: Debbie Shepherd
<Dshep9141@AOL.COM>
Subject: Re: latex allergies
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Hi everyone! My name is Debbie my daughter is Jillian. I am usually
a
"lurker". I have been following about the latex allergies.
I wasn't aware
that aperts children were more sensitive. But it makes sense. I am
also a RN.
and very familiar with issues on latex allergies. It can be avery serious
even life threating problem if the health care workers are not aware
of the
allergy. Even if a sensitivity is diagnosed the child or persons should
wear
a medical alert bracelet so exposure can be prevented. Latex allergies
become
more severe the more exposure you have. Most if not all hospitals,
now have
latex free areas or carts. But the problems can arise if you are not
with
your child and something happens that they have to be taken in an ambulance
(which most are not latex free) or taken to a smaller community hospital
where they are unaware or unable to handle such a situation. There
is so much
information available now on latex allergies . Most hospitals are now
doing
at least yearly seminars on the topic because of its seriousness.
Hope this
helps!
d
Debbie Shepherd
Jillians mom
PS. Love the picures!! I am working on getting Jillians out soon!!
=========================================================================
Date: Tue, 18 May 1999
17:37:24 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: latex allergies
In-Reply-To: <a07a5029.24730b09@aol.com>
MIME-Version: 1.0
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> Would the symptoms be a rash or something more severe?
Reactions to latex can be anything from a skin rash
to
anaphylactic shock (life threatening). People with mild symptoms
really need to avoid further latex exposure whenever possible, as
symptoms can get worse very suddenly.
Except in rare cases, most people don't react to
more solid forms
of latex -- pencil erasers, balls, nipples, etc -- because the
proteins that cause allergies are present in much smaller
concentrations. Latex balloons, gloves, catheters, etc are higher
risk. Things that remain in prolonged exposure are higher risk --
like gloves during surgery, latex catheters, etc.
Latex nipples aren't one of the higher risk items, but
IMHO, they
are best avoided for kids who can expect frequent hospitalizations
&
especially frequent invasive procedures.
Judy
=========================================================================
Date: Tue, 18 May 1999
20:45:31 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: latex
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Hello,
I am a parent of a 9 year old with Aperts. (Lisa Picht). We have
always =
been told that kids like Lisa (any kid with medical problems)
should =
not be around Latex. When Lisa had her head surgery in 1997 the
=
hospital would not allow us to have latex balloons in her room.
They =
said that kids that have alot of medical problems should not be around
=
them. =20
I don't even let her have regular balloons at home. Maybe I shouldn't
=
be like that but I feel we have seen enough of hospitals and doctors
=
that I will take this precaution to keep her safe.
I do think she has some allergies but how do they test for them?
How do =
they pinpoint what allergy a person has?
Lisa always has a runny nose. Year round. I bet I have sent
5 or 6 =
boxes of Kleenex to school this year. This is a minor expense
but I =
would like to know if there is an easy test to see if she does have
=
allergies and what is she allergic to?
I feel she has got to have some type of allergy.
If anyone has any comments please send them my way. It would be
nice to =
not have to take kleenex everywhere we go.
Thanks
Deb Picht
------=_NextPart_000_002A_01BEA16F.5EED3BC0
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 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I am a parent of a 9 year
old with =
Aperts. (Lisa=20
Picht). We have always been told that kids like Lisa (any
kid with =
medical=20
problems) should not be around Latex. When Lisa
had her head =
surgery=20
in 1997 the hospital would not allow us to have latex balloons in her=20
room. They said that kids that have alot of medical problems
=
should not be=20
around them. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I don't even let her have
regular =
balloons at=20
home. Maybe I shouldn't be like that but I feel we have seen
=
enough of=20
hospitals and doctors that I will take this precaution to keep her=20
safe.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I do think she has some allergies
=
but how do=20
they test for them? How do they pinpoint what allergy a person=20
has?</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Lisa always has a runny nose.
=
Year=20
round. I bet I have sent 5 or 6 boxes of Kleenex to school
this=20
year. This is a minor expense but I would like to know if
there is =
an easy=20
test to see if she does have allergies and what is she allergic =
to?</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>I feel she has got to have
some type =
of=20
allergy.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>If anyone has any comments
please =
send them my=20
way. It would be nice to not have to take kleenex everywhere
we=20
go.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Deb Picht</FONT></DIV></BODY></HTML>
------=_NextPart_000_002A_01BEA16F.5EED3BC0--
=========================================================================
Date: Wed, 19 May 1999
13:48:34 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Grommets et al (was Andrea)
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Now, Seth's ears are driving him crazy, he bats
>at them constantly. He is taking an antibiotic but it really
hasn't
>helped. I feel like Rosana Rosana Dana, "if it isn't one thing
it's
>another".
Hi Dori, I can understand you wanting them to take out the grommets if they have been in there THAT long! I thought they were meant to fall out within a couple of years. Maybe Seth needed new ones anyway. Hope it settles down soon.
I have my crew lining up for their drops now - Howard stabbed himself in the eye at the weekend and has spent the last couple of days in a darkened room, so he has eye drops, Amy is still on her ear drops, the dog has an ear infection so has to have ear drops, and the cat got into a fight last night and is lying on my bed feeling very sorry for himself - won't even purr.
Just as well Mum stays healthy!
Take care
Ann
NZ
>
>Warmly, Dori
>
>
=========================================================================
Date: Wed, 19 May 1999
13:48:32 +1200
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Photo Exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
We have four (5?) lovely sets of photos - thanks to Chelsea and Courtney Holt, Samantha Guyette (a look-alike to our Amy at that age!), Carlee Williams and Caroline and Taylor Tingley for letting your Mums and Dads send us your photos.
I thought we had also received a photo of Emily Krebs because I have a distinct recollection of comparing it with the previous one. Have I put it in a "Safe Place" or is my memory going?
I hope to get an up-to-date one of We Three soon and get copies out to those on the list.
We need a bigger hallway - we have a world map surrounded by photos of our Listserver "Family".
Cheers
Ann
NZ
=========================================================================
Date: Wed, 19 May 1999
13:54:21 +1200
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: latex
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Lisa always has a runny nose. Year round. I bet I have
sent 5 or 6 boxes of Kleenex to school this year. This is a minor
expense but I would like to know if there is an easy test to see if she
does have allergies and what is she allergic to?
>I feel she has got to have some type of allergy.
A friend of ours has taken their son off a range of products she felt he was allergic to (she is training as a naturopath) and he copes much better at school now. She talked with the endocrinologist who informed her (without doing any checks) that her son was not allergic to anything, he just wasn't being fed enough, and told her to go and buy him Mcdonalds. (I'm still wondering who scraped him off the walls)
Stick to your guns - if you think your child has allergies chose the right person who will take your concerns seriously and not treat you like a "neurotic mother". We know our children, they don't.
Regards
Ann
NZ
=========================================================================
Date: Tue, 18 May 1999
21:56:54 EDT
Reply-To: Information exchange and Internet
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From: Nodrmat26@AOL.COM
Subject: Down; Zoey
MIME-Version: 1.0
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Hi All~
Not only was surgery cancelled, my precious baby developed pneumonia,
so now
she's in the hospital. Despite that, I suppose I'm feeling a
little better.
Zoey's in pretty good spirits, if you can believe it.
This surgery wasn't Zoey's first to be cancelled either. Her first
head
surgery was cancelled (cold) and the the second to remove her distractors
was
cancelled once, too (cold). It's very frustrating. This
surgery was
supposed to be the one to help remove her trach afterwards. This
darn trach
drives me nuts!
Someone mentioned to take time for yourself when you're feeling blue.
I
certainly wish tea was something that I enjoyed...that would make it
easier
for me. What I like to do, is to go see a show..all by myself.
But there's
never any time to do that. when Zoey's home during the week,
the nurse
doesn't come until 10 pm and I have to work the next day. On
the weekends, I
don't get a nurse at all and I can't ask my mother to watch Zoey just
for a
movie (my Dad would get mad). Besides, I have my 6 yr old to
worry about. I
swear, I've seen A Bug's Life and The Prince Of Egypt 10 times a piece!!!
For those who aren't aware, I live with my parents because of
my financial
situation. I have to keep my income low enough for SSI and Medicaid
to
support Zoey. So, anyways. I'll be out of the Army this
summer and I think
alot of the stress will be relieved.
Thanks to everybody who wrote me and prayed for me. It has helped.
Goodnight everyone!
Christina (San Antonio)
=========================================================================
Date: Tue, 18 May 1999
21:57:25 -0500
Reply-To: Information exchange and Internet
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: latex
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0008_01BEA179.6A2559A0"
This is a multi-part message in MIME format.
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Lisa,
I had the same problem with Nick when he was younger, his nose
would =
run for a few days then he would get an infection.
this happened one time when we went to Michigan and I took him to the
=
ped. that my niece worked for.
He immediately told me that Nick had allergies. He said that yoy could
=
tell by the blueish color under his eyes.
At that time he was really too young to be tested but since then we
have =
found out that he is mildly allergic to timothy weed.
Nick gave me quite a scare tonight. We just got home from the
e.r.
He was at the park and fell about four feet onto his back. He
turned =
bright red and started sweating terriby. It knocked the wind
out of him =
and he had a hard time walking straight. He apparently has some
bruised =
ribs and will probably pretty sore for the next few days.
The little stinker, the nurse went to give him some Motrin and he =
knocked it right out of her hands. Needless to say, he and I
both got a =
bath in it.
Well I sure hope he is back to norm in a day or two, when he hurts,
I =
hurt as well.
Deb, hope this helps.
Judy
----- Original Message -----=20
From: Randy & Deb Picht=20
To: APERT@LISTSERV.AOL.COM=20
Sent: Tuesday, May 18, 1999 8:45 PM
Subject: latex
Hello,
=20
I am a parent of a 9 year old with Aperts. (Lisa Picht).
We have =
always been told that kids like Lisa (any kid with medical problems)
=
should not be around Latex. When Lisa had her head surgery in
1997 the =
hospital would not allow us to have latex balloons in her room.
They =
said that kids that have alot of medical problems should not be around
=
them. =20
=20
I don't even let her have regular balloons at home. Maybe
I shouldn't =
be like that but I feel we have seen enough of hospitals and doctors
=
that I will take this precaution to keep her safe.
=20
I do think she has some allergies but how do they test for them?
How =
do they pinpoint what allergy a person has?
=20
Lisa always has a runny nose. Year round. I bet
I have sent 5 or 6 =
boxes of Kleenex to school this year. This is a minor expense
but I =
would like to know if there is an easy test to see if she does have
=
allergies and what is she allergic to?
I feel she has got to have some type of allergy.
If anyone has any comments please send them my way. It
would be nice =
to not have to take kleenex everywhere we go.
=20
Thanks
Deb Picht
------=_NextPart_000_0008_01BEA179.6A2559A0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Lisa,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I had the same problem with
Nick when =
he was=20
younger, his nose would run for a few days then he would
get an=20
infection.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>this happened one time when
we went to =
Michigan and=20
I took him to the ped. that my niece worked for.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>He immediately told me that
Nick had =
allergies. He=20
said that yoy could tell by the blueish color under his =
eyes.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>At that time he was really too
young to =
be tested=20
but since then we have found out that he is mildly allergic to timothy=20
weed.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Nick gave me quite a scare =
tonight. We just=20
got home from the e.r.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>He was at the park and fell
about four =
feet onto=20
his back. He turned bright red and started sweating terriby.
=
It=20
knocked the wind out of him and he had a hard time walking =
straight. He=20
apparently has some bruised ribs and will probably pretty sore for
the =
next few=20
days.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>The little stinker, the nurse
went to =
give him some=20
Motrin and he knocked it right out of her hands. Needless
to say, =
he and I=20
both got a bath in it.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Well I sure hope he is back
to norm in =
a day or=20
two, when he hurts, I hurt as well.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Deb, hope this helps.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 2px solid; MARGIN-LEFT: 5px; MARGIN-RIGHT:
=
0px; PADDING-LEFT: 5px; PADDING-RIGHT: 0px">
<DIV style=3D"FONT: 10pt arial">----- Original Message -----
</DIV>
<DIV=20
style=3D"BACKGROUND: #e4e4e4; FONT: 10pt arial; font-color:
=
black"><B>From:</B>=20
<A href=3D"mailto:rldpicht@INFO.STARPOINT.NET"=20
title=3Drldpicht@INFO.STARPOINT.NET>Randy & Deb Picht</A>
</DIV>
<DIV style=3D"FONT: 10pt arial"><B>To:</B> <A=20
href=3D"mailto:APERT@LISTSERV.AOL.COM"=20
title=3DAPERT@LISTSERV.AOL.COM>APERT@LISTSERV.AOL.COM</A>
</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Sent:</B> Tuesday,
May 18, 1999 =
8:45 PM</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Subject:</B> latex</DIV>
<DIV><BR></DIV>
<DIV><FONT color=3D#000000 size=3D2>Hello,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I am a parent of a
9 year old with =
Aperts.=20
(Lisa Picht). We have always been told that kids like
Lisa (any =
kid with=20
medical problems) should not be around Latex.
When Lisa =
had her=20
head surgery in 1997 the hospital would not allow us to have
latex =
balloons in=20
her room. They said that kids that have alot of medical
problems =
should=20
not be around them. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I don't even let her
have regular =
balloons at=20
home. Maybe I shouldn't be like that but I feel we
have seen =
enough of=20
hospitals and doctors that I will take this precaution to keep
her=20
safe.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I do think she has
some allergies =
but how do=20
they test for them? How do they pinpoint what allergy
a person=20
has?</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Lisa always has a
runny =
nose. Year=20
round. I bet I have sent 5 or 6 boxes of Kleenex to
school this=20
year. This is a minor expense but I would like to
know if there =
is an=20
easy test to see if she does have allergies and what is she
allergic=20
to?</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>I feel she has got
to have some =
type of=20
allergy.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>If anyone has any
comments please =
send them my=20
way. It would be nice to not have to take kleenex
everywhere we=20
go.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Deb=20
Picht</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_0008_01BEA179.6A2559A0--
=========================================================================
Date: Tue, 18 May 1999
22:59:16 +0000
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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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: latex
In-Reply-To: <002d01bea199$492b5f40$b1c520d1@oemcomputer01>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> I am a parent of a 9 year old with Aperts. (Lisa Picht). We
have always been told that kids like Lisa
> (any kid with medical problems) should not be around Latex.
When
Lisa had her head surgery in >
> I don't even let her have regular balloons at home. Maybe I
shouldn't be like that
You're doing exactly the right thing. Latex balloons
are a dipped
latex product -- the highest risk sort of latex for a person with
latex sensitivities (or potential for them) to be around. Latex
gloves are the other really highest risk product. I try
not to have
them in my house (I'm the sensitive person here), and I absolutely
do
not blow them up.
> I do think she has some allergies but how do they test for them?
Three ways (although one is controversial). For food allergies,
the most reliable test is an elimination diet. For several days,
you
feed the child a VERY restricted diet. I forget exactly, but
it's
something like lamb, rice, and water. No kidding -- no fun.
An
allergist could give you more detailed instructions. After several
days on the restricted diet, you add back potential allergens one at
a time. This is a VERY slow process, but if you suspect many food
allergies, it can be worth the effort.
If you only suspect a few, eliminate those from the diet
completely and don't be so restrictive about other foods. If
symptoms improve, add back the suspected foods one at a time until
she reacts to something. If she has any food allergies, they're
probably to her favorites......luck tends to run that way.
For respiratory allergies, there are 2 types of tests (also
sometimes used for foods, but less reliable for that than the
elimination diet). One is the skin prick test. Using this
to test
for latex allergy in an individual you think has reacted
significantly in the past can be pretty dangerous -- it should only
be done by a board certified allergy/immunology doc.
The more controversial test is a blood test for allergens.
It's
expensive and doctors disagree about its reliability. It is called
the RAST test. I'd opt for this one as a test for latex allergy
if
one is needed. The big problem being that a negative doesn't
necessarily mean no allergy as it's not 100% reliable. Doesn't matter
anyway -- if you suspect latex allergy, you should be avoiding it in
any case.
My husband has been getting allergy shots for nearly
20 years.
Most people only need them for a few, if they need them at all. An
allergist can provide much relief without desensitization injections
with all the new antihistamines and nasal sprays around.
Judy
=========================================================================
Date: Tue, 18 May 1999
23:52:18 -0600
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: cgraham <cgraham@INFOAVE.NET>
Subject: photo exchange
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Has anyone not received Daryl Graham's pictures yet? If not, let
me know
and I will make sure I had your adress. Thanks for the pictures
I have
received so far...Courtney Holt, Carlee, Samantha, Caroline, and one
of a
precious little girl with blonde ringlets and glasses. I forgot
to write
her name on the back of the pictures. Sorry! I hope everyone
is doing
O.K.
Joanne, I will keep you
in our prayers!
Andrea, Good luck on your upcoming surgery.
My husband recently worked
on my computer and accidentally deleted
ALL of my e-mail adresses and e-mails that I had saved for over the
last 2
years. If I haven't written some of you lately, that is the reason
why.
If i was supposed to respond to some of you, let me know what about
again,
and i will make sure to keep Chad away from the computer next time!
God Bless!
Denise Graham
=========================================================================
Date: Wed, 19 May 1999
06:55:58 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: allergies
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Friends,
Seth has sever allergies to peanuts and codeine. He wears an ID
tag on
the lace of his shoe because he refuses to wear a bracelet or necklace.
He had a slight egg allergy when he was younger but seems to have out
grown it. He can now eat eggs without any noticeable reactions.
I wish
the peanut allergy would go away. It is amazing how many products
there
are that have peanuts in them. He is so allergic that he has a reaction
to the smell of peanuts, so he can't be in a room where people are
eating them. He has learned to read labels and is quite vocal about
the
allergy.
Dear Ann, I do believe that you need a sabbatical. Dogs don't
purr
under the best of circumstances!!! I feel deep sympathy for Howard.
I
wore my contacts too long once twelve years ago and had to have my
eyes
bandaged for 24 hours, the pain was horrible. It was so bad that
I quit
wearing contacts. Seth hates ear drops and that will be our next
step
if the oral meds don't work. He is almost too big for me to hold
down.
I am enjoying looking at the wonderful pictures I have received and
will
send Seth's out in June. I just have to get through Delaney's
wedding.
My, my aren't I chatty today!! Guess I had better get busy making
center pieces for the reception.
Warmly, Dori
=========================================================================
Date: Wed, 19 May 1999
14:45:23 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: BBarn60368@AOL.COM
Subject: Re: Andrea
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Andrea:
Good luck with your surgery. I will be praying for you, the surgeons,
and
all the rest involved.
You'll never know how proud I am of you, even though I have never met
you.
Congrats on your associate's degree and I wish you the best in accomplishing
your goals for your next degree AND living away from home. I've
been there
and done that on both accounts and you are right... it is a wonderful
experience.
May God bless,
Alice in Orlando, Fl.
=========================================================================
Date: Wed, 19 May 1999
14:50:52 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: BBarn60368@AOL.COM
Subject: Re: MRI & Cleft Palates
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Lisa:
What you have to say always seems so insightful and so well put.
Thanks, I
truly enjoy your input.
Much love,
Alice in Orlando
=========================================================================
Date: Wed, 19 May 1999
18:55:56 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: photo exchange
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DEAR DENISE, I GOT DARYL'S PIC AND WROTE AND THANKED YOU BUT IN CASE
YOU
DIDN'T GET IT, THANK YOU SO MUCH HE IS A CUTE KID AND SO IS HIS BIG
SISTER. I
LOVE ALL THE PICTURES I HAVE GOTTEN AND, I AM MAKING A SPECIAL
ALBUM FOR
THEM AND CARLEE.THANKS AGAIN MARILYN
=========================================================================
Date: Wed, 19 May 1999
19:47:30 EDT
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safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: down
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Joanne,
I sure will keep you in my thoughts and prayers. I hope you get
back to
yourself soon. Take care and keep in touch.
Cristy and Carlee
in Florida
=========================================================================
Date: Wed, 19 May 1999
22:29:01 -0400
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From: foster <foster@ICONTECH.COM>
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It has been a while since I wrote anything but I have been reading
everything that is going on.
Andrea our prayers are with you and we are also very pround of you
on your
graduation. You are a hard worker and it shows in all that you do.
Sorry to hear that Zoey is in the hospital and that Mom is so down.
Hopefully she will be home soon and she can get her surgery real soon.
Sometimes a nice warm long bath with door locked can help relax me.
I say
door locked because whenever I don't lock the door there is no relaxing
at all.
Today Billy was suppose to have his last release down on his fingers.
It was
cancelled by us at the last minute. He did get a good checkup at the
doctors
yesterday except he had a slight fever which could not be explained.
So we
were going to see what happened before the surgery. The hospital is
two
hours away so the trip was set for a three a.m. start. Well, our sixteen
year old daughter took off with her male friend for the second time
this
week. She also took off last Saturday. We were driving around for thirteen
hours straight and did not find her until Sunday afternoon.Last night
we
were able to find her by twelve o clock. It is a new and frightening
experience for us not to know where our baby was. Cops were called
and we
did everything possible. This is a boy who is getting ready to turn
20 years
old in June and our daughter is only 16. Could the cops do anything
to this
guy?? NO.NO.NO. Even though he was with her the whole time there was
nothing
we could do to him. He is someone she met at work and said he was 17.
When
we found out the truth we refused to allow her to see him. This is
why she
has done this heart breaking thing . Anyway we decided this was not
a good
time for Billys surgeries. We have had to cancell things in the past
for the
girls because Billy needed surgery or a visit to his surgeon. This
is the
first time it was the other way around. It made us feel badly but as
all of
you guys know who have other kids,we love them all the same and have
to be
there for everything.Anyway, I have been talking to all kinds of people
in
the hope that someone would be able to help us have something legally
done
to this guy but, so far no luck.
I know this is not the normally what I write about and it is a family
thing
but this has been hard on all of us and I for one needed to talk to
someone
about it so why not everyone.
One more thing this guy has a record. Still nothing so far can be done.
I
have an appointment with the Distric Att.office on friday and I am
praying
they can help. Hope someone can help before my husband takes care of
it
himself. Dad and daughters are a very close thing.
Anyway, early this morning Billy had no fever at all. This afternoon
he
started running a fever of 101.6 and seems to have a stomache virus.So,
if
he had his surgery this morning thing could have been very bad. Things
happen and some how we just don,t know why.Glad we didn"t go a head
with the
surgery but wish it was for a different reason.
So, this is so long but I needed to conplain to someone. Anyone
out there
with any advise please write.
Hope everyone is well and Our Prayers as always are with you all. These
days
we just need more time to fit in all of our prayers.
Thanks for listening
Karen (PA)
P.S. Colleen, I will talk to you soon.
=========================================================================
Date: Wed, 19 May 1999
22:53:18 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: JobeCST@AOL.COM
Subject: Re: photo exchange
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Hi Denise Graham,
Thank you for the wonderful, cute picture of Daryl. It gave my
day a boost
to see him holding that bat. Were having a hard time getting
Tyler to use
his fingers to pick up anything but crackers. He goes down town on
crackers.
It's nice to see older kids doing things tyler's therapest say's that
he
probally won't do!!!! I'm still waiting on the reprints of Tyler
to send.
Just had too many irons in the fire !
Congradulations on the new baby's and grad's and we
pray for all the kids
and parents going threw sick and bad days. The sun will shine
on you in the
morning.
God Bless You All
Chris, Stacey & Tyler Jobe
Cisco Tx.
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Date: Wed, 19 May 1999
22:51:48 +0000
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> So, this is so long but I needed to conplain to someone. Anyone
out there
> with any advise please write.
If you haven't already pursued it, you might want
to consider
family counselling and/or individual or group counselling for your
daughter. I can only begin to imagine how upset you must have
been
-- I have 2 teenagers, both boys. Kids that age tend to be self
centered -- even the best ones. They have their good moments,
but
it's a developmental stage and not unlike having tall 2 and 3 year
olds. Since I also have a 3 year old, I've noticed that the
similarity can be striking.
It's a difficult balance between emerging independence
and a need
for guidance. My oldest used to think we were terribly unreasonable
because we made him clean his room and do a few household chores.
He
was also having difficulty adjusting to school at the time, so we
arranged for him to join a counseling program at the school. It was
a
real eye-opener for him to find out that everyone else in the group
had an alcoholic or genuinely abusive parent.
You do have to be selective about counselors -- a
few will tell
your daughter that you have no right to discipline her. A good one
will help her see that you're not such villains after all.
Judy
=========================================================================
Date: Tue, 18 May 1999
23:52:16 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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Comments: RFC822 error: <W> Incorrect or
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ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Andrea & Latex
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I think just to be safe Im going to ask everyone involved in my midface
to
wear nonlatex gloves. I know of another girl with Apert who had
an allergic
reaction to latex when she had her midface. I think she had an
infection
because of it, not sure exactly. She did have to stay in the
hospital
longer. I'm planning on contacting her again.
Marilyn and everyone else. My midface will be done by Dr. S. Anthony
Wolfe
at the Miami Children's Hospital
(3100 S.W. 62nd Avenue Miami, Florida 33155)
Im going to keep a journal of the experiance, I know someone is having
it
done soon after me.. Was it Kelly?
=========================================================================
Date: Thu, 20 May 1999
02:49:15 EDT
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safe haven for Apert Syndrome
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: This and That
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Karen: We just went through the teenage boy side of your situation.
My
stepson is l8 1/2 and recently just tested that by not coming home
at night.
We told him he had to call us but he continued. Then he decided
at the last
minute (or said this) that he and friends were going to Laughlin on
Easter.
His father said he had to call us when he got there. He said
he would be
back tuesday. We did not hear anything until he walked in on
Thursday.
After long talks and showing him what an adult means it seems to be
better.
I know he has a girlfriend who is 16 and I often wonder if her parents
know
that she's out late with him. We don't know who she is
really to check.
I'm sorry that you have the girl side of this situation. I think
you are
doing right to make sure this doesn't continue. I'm just sorry
you have to
go through it.
Shirley thanks for your note, it means a lot.
I've been concerned this past week that Samantha's head has grown quite
a lot
in last two months. The hats I bought her two months ago can't
even fit on
her head. Why I'm concerned is that I feel that we might
be heading towards
a head surgery before the finger surgery June l8th. My husband
said theire
is no medical studies on the "hat theory." So let's call it a
mother's
intuition. MRI of head on June l0th.
Everyone have a wonderful weekend.
Love, Lisa Guyette
=========================================================================
Date: Thu, 20 May 1999
10:43:59 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: photo exchange
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Can anyone send me the names on the photo exchange list in Word format??
I
have Jake's pictures all ready to go, I just need the names.
I do not have
direct access to the Internet, just an e-mail address. Please
send the list
as soon as you can.
Thanks!!
Liz Niemi and Family
-----Original Message-----
From: cgraham
[SMTP:cgraham@INFOAVE.NET]
Sent: Wednesday,
May 19, 1999 12:52 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
photo exchange
Has anyone not received Daryl
Graham's pictures yet? If not, let me
know
and I will make sure I had
your adress. Thanks for the pictures I
have
received so far...Courtney
Holt, Carlee, Samantha, Caroline, and one
of a
precious little girl with
blonde ringlets and glasses. I forgot to
write
her name on the back of
the pictures. Sorry! I hope everyone is
doing
O.K.
Joanne, I will keep you in our prayers!
Andrea, Good luck on your upcoming surgery.
My husband recently worked on my computer and accidentally
deleted
ALL of my e-mail adresses
and e-mails that I had saved for over the
last 2
years. If I haven't
written some of you lately, that is the reason
why.
If i was supposed to respond
to some of you, let me know what about
again,
and i will make sure to
keep Chad away from the computer next time!
God Bless!
&nb