Dear Friends,
Well it seems that the Department have decided to not worry about Tony's
weight issue in regards to the Adoption of Laura.
I rang a spoke to her social worker, and our file is nearly ready to
be
stamped approved. They are just awaiting the referee's which are in
the
office on the desk of the Group leader (head social worker), They are
not
to worried about Tony's weight and have said all they may want is,
Blood
sugar and lipid levels(fat).
The Social worker was extremely helpful and very pleased with our
application, she said our family profile was one of the most informative
that she had seen. She said that she felt Laura would fit into our
family
very well, and that we sounded like a very loving family.
She told me a little more about Laura to, it seems that she is doing
extremely well, has several teeth and is crusing around the funiture.
She is having a little trouble with balance, because her feet are to
small
due to the webbing, she is very happy and is a cuddily child. She is
saying
several words and seems to be okay mentally.
She will be assest this month to have her palate fixed, but I'm hoping
we
have her before they do this, We want to have the say over when and
who
does this.
The Social worker has invited us to come and see some photo's of her
in the
next week or so, and then once we have our approval letter, the home
study
is done, then it moves very quickly to the time she comes home.
We are trying not to get our hopes up to much, only because we don't
want
our hearts crushed if someone at the last minute decideds Tony's weight
is
an issue.
Thanks again to all of you for our support and your caring words,
the vibes must of paid off,
Fingers crossed
Nicki and Tony Zieth, awaiting Laura to add to Lachlan, Jamie and Katie.
Queensland Australia.
=========================================================================
Date: Wed, 14 Apr 1999
23:47:35 -0500
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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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hello everyone!
I know this isn't the most favorable topic that people like to talk
about,
but when you have kids, it's a daily occurrence. Jake (17 mos.)
is having
severe difficulty with bowl movements (constipation). He started
this
problem about 6 months ago and it seems to be getting worse.
He has seen
his pediatrician about this, and has had two rectal exams. Both
turned out
fine. We've cut out most dairy foods and other types of foods
that might
make it hard for him to go. We've increased fiber and other things
in his
diet to help him go. We've given him mineral oil (doctor's suggestion),
Metamucil wafers, prune juice, and when really bad, suppositories.
We've
done everything short of an enema. The poor little guy
cringes in pain
when he's trying to go. It just breaks my heart. I have
not heard that
this is a symptom of Apert's, is it? Has anyone else experienced
this with
their little ones? I'm on the verge of bringing his to a specialist
because
nothing seems to be working.
Please help if you can.
Thanks!
Liz Niemi & Family
=========================================================================
Date: Thu, 15 Apr 1999
10:10:09 EDT
Reply-To: Information exchange and Internet
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From: Jenngram@AOL.COM
Subject: Re: # 2 Problem
MIME-Version: 1.0
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I would suggest ssing a Pediatric GI doc, as they are good about giving
ideas....Jordan has one for reflux (which seems to ahev gone away
finally...YEAH!!!!!) and I brought up this same subject w/ him b/c
it happens
from time to time....He suggested Milk of Magnesia, get a dosage form
a
doctor based on weight, but what seems to work best for Jordan AND
everyone
else in our house, is PLENTY of non caffienated fluids.....Jordan drinks
appx. 32-44 ozs of fluid a day (diluted juice or water), which is quite
a bit
for a guy who weighs 26lbs., but it keeps everything coming.
Dehydration is a big culprit of constipation, not dehydration to the
point of
passing out, but evena s adults we should all drink well over the 6-8
8oz
glasses of water...Just an idea...but the GI doc is probally the person
to
see if you start to get really worried
Jenn(Tampa/St. Pete)
=========================================================================
Date: Thu, 15 Apr 1999
10:22:33 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Fw: Howdy from KY
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Carol,
Sorry it's taken me awhile to respond...about the Red System...We are
going
to see the Dr. on Mon. 4/19. about this Red system...I just don't know
what
we are going to do...I think what makes me nervous is the fact that
they
haven't done this on teenagers...Kris is 15...going on 16 (7/2)...I
don't
remember being this nervous about Kris' other surgeries...or even trying
to
decide!!! This is not easy.
Pray for us...Kris still does not know anything about it...only that
we are
going to see the Dr to TALK about surgery....She says she dooes not
want to
even discuss it..
Back to work.. Big hug to Nicholas.
Ruth Contreras (aka "nervous mom")
----------
> From: Carol Graves <tcgraves@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Fw: Howdy from KY
> Date: Monday, April 12, 1999 2:09 PM
>
> ----- Original Message -----
> From: Carbide Tech <ruth@CARBIDETECH.COM>
> To: <APERT@LISTSERV.AOL.COM>
> Sent: Monday, April 12, 1999 12:01 PM
>
> > To Michael Sparrow (Talitha's dad) I am still very
to this
> > > RED system...I cringe at the thought...I need prayer..big time!!!!!!
> > >
>
>
> Ruth,
> I join you in being apprehensive about the RED System... Nicholas
is
> scheduled for it at the end of July and I already am so nervous !!!
> Carol Graves
=========================================================================
Date: Thu, 15 Apr 1999
13:33:43 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Liz,
The only thing I can suggest is on the food thought. All foods
that begin with
the letter 'P' will give you the runs.....Peas, Pears, Prunes, Peaches
and so
on. Fruit is the best fiber. We have to stay away from
Apple Juice and alot of
grapes, because those two foods give Andrew the runs. Also, remember,
no
bananas or apple sauce. Those two foods will bind you.
That is all the
knowledge I have on the subject.
Lynn
=========================================================================
Date: Thu, 15 Apr 1999
19:45:29 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Alex and RED system
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0004_01BE8778.840814E0"
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charset="iso-8859-1"
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Dear All,=20
As I told you last week,
Alex was diagnosed per sleep study with =
moderate-severe obstructive sleep apnea. Today we visited Cleveland
=
Clinic to see the craniofacial team there for our yearly visit.
Without =
going into all the details, Alex will have midface surgery this summer
=
using the RED system, which Dr. Papay, our craniomaxillofacial surgeon
=
has done twice in the past year. We were excited that we won't have
to =
go so far away for this. The team is VERY concerned about Alex's airway,
=
as it is small and constricted. He will be starting on CPAP (forced
=
oxygen at night) as soon as possible, probably tomorrow, and if that
=
doesn't work they will have to trach him until the surgery is done.
They =
need 1-2 months to prepare everything for the surgery. They took the
=
dental molds and did a panorex x-ray today to start the process. We
go =
back in three weeks for another meeting for further planning. I am
not =
sure I am ready for all of this, but it has to be done for Alex's =
health.
Alex is having another hand surgery tomorrow here in Columbus and I
am =
worried that they will cancel it when the anesthesiologist finds out
=
about the sleep apnea. Anyone have any advice or experience with this?
=
Have any of you had to have surgery cancelled for this reason, or are
=
there extra precautions to take? Anyway, say a prayer for Alex tonight.
=
Alex will be crushed if he can't have the surgery. He wants 5 digits
so =
badly.
Judy, I'm sorry I haven't had a chance to call you
back yet. I will =
after the next few days are over.Send me a message if you want. I would
=
love to here the story you were going to tell me!
My best wishes and prayers go out to you all and
especially those =
having surgery. Take care. Amy Irvin
------=_NextPart_000_0004_01BE8778.840814E0
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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>Dear All, </FONT></DIV>
<DIV><FONT color=3D#000000 =
size=3D2>
As I=20
told you last week, Alex was diagnosed per sleep study with =
moderate-severe=20
obstructive sleep apnea. Today we visited Cleveland Clinic to
see =
the=20
craniofacial team there for our yearly visit. Without going into all
the =
details, Alex will have midface surgery this summer using the RED =
system, which=20
Dr. Papay, our craniomaxillofacial surgeon has done twice in the past
=
year. We=20
were excited that we won't have to go so far away for this. The team
is =
VERY=20
concerned about Alex's airway, as it is small and constricted. He will
=
be=20
starting on CPAP (forced oxygen at night) as soon as possible, probably=20
tomorrow, and if that doesn't work they will have to trach him until
the =
surgery=20
is done. They need 1-2 months to prepare everything for the surgery.
=
They took=20
the dental molds and did a panorex x-ray today to start the process.
We =
go back=20
in three weeks for another meeting for further planning. I am not sure
I =
am=20
ready for all of this, but it has to be done for Alex's =
health.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Alex is having another hand
surgery =
tomorrow=20
here in Columbus and I am worried that they will cancel it when the=20
anesthesiologist finds out about the sleep apnea. Anyone have any advice
=
or=20
experience with this? Have any of you had to have surgery cancelled
for =
this=20
reason, or are there extra precautions to take? Anyway, say a prayer
for =
Alex=20
tonight. Alex will be crushed if he can't have the surgery. He wants
5 =
digits so=20
badly.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
Judy, I'm sorry I =
haven't had=20
a chance to call you back yet. I will after the next few days are =
over.Send me a=20
message if you want. I would love to here the story you were going
to =
tell=20
me!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
My best wishes =
and prayers go=20
out to you all and especially those having surgery. Take care. Amy=20
Irvin</FONT></DIV></BODY></HTML>
------=_NextPart_000_0004_01BE8778.840814E0--
=========================================================================
Date: Thu, 15 Apr 1999
20:31:50 -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
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Red System
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi everyone,
I'm sorry that I am asking this question, because I know that e-mails
were going back and forth a while back on the subject. But that
must
have been one of the times that I was in la la land and didn't pay
attention. Well here it goes. What exactly is the Red System???
O.k.
don't you all yell at me at once. I'll wait patiently for your
response.
Thanks all..
Raquel....
=========================================================================
Date: Thu, 15 Apr 1999
23:35:38 +0000
Reply-To: Information exchange and Internet
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: # 2 Problem
In-Reply-To: <59989EE00CC0D0118F7B0008C7F4687801D2C0D4@m303.nmb.norwest.com>
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Liz,
Increasing fluid intake can sometimes do wonders for constipated
kids. I recommend apple juice -- it can have the
effect of causing diarrhea in many small children, so it might be
just the thing for him. Sugar free candy with sorbital
can have the same effect (my kids had the opposite
problem from Jake, can you tell). Fresh fruit (except bananas)
generally helps, but I wouldn't count on anything in a baby food jar
to have much effect (well, maybe prunes). It all has so much
added
water that there's not much fiber there.
Unfortunately, one bad bout of constipation
can make little guys
reluctant to try again, for fear it will hurt. Any rectal
manipulation contributes to this, but you reach a point where there's
no choice sometimes.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Fri, 16 Apr 1999
01:55:33 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Irmocat2@AOL.COM
Subject: Re: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Liz,
Teeter had a really bad problem with constipation when she was 3 or
4. We
tried everything for about 6 months. She even got hemorroids
from it (which
she still has). We noticed that she loved sweet iced tea and
drank that all
the time instead of apple juice. When we quit with the tea and
gave her only
apple juice, the problem cleared up. We had a time trying to
figure that one
out, even her doctor didn't know what to do for her. I just hated
that she
had to go through all that and I hate that Jake is having problems
with it
now. Hope the information from all of us helps him.
Cathie
=========================================================================
Date: Fri, 16 Apr 1999
19:28:21 +1200
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: We are getting ready to
Celebrate!!!!!!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hey, sounding Gooood!
Keep up the good work.
Cheers
Ann, Howard and Amy
NZ
=========================================================================
Date: Fri, 16 Apr 1999
05:29:24 -0500
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: Carol Graves
<tcgraves@BELLSOUTH.NET>
Subject: Re: RED system
MIME-Version: 1.0
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boundary="----=_NextPart_000_001C_01BE87CA.169416A0"
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Nicholas also will be having the RED System surgery done this summer
=
(July 22). And a surgery to correct overlapping of his fingers
next =
month (May 10). Amy, I know how you feel about not bing ready
for =
this... I have never been really as nervous about any of his surgeries
=
as I am about the RED System ....=20
Carol
----- Original Message -----=20
From: Amy=20
To: APERT@LISTSERV.AOL.COM=20
Sent: Thursday, April 15, 1999 6:45 PM
Subject: Alex and RED system
Dear All,=20
As I told you
last week, Alex was diagnosed per sleep study =
with moderate-severe obstructive sleep apnea. Today we visited Cleveland
=
Clinic to see the craniofacial team there for our yearly visit.
Without =
going into all the details, Alex will have midface surgery this summer
=
using the RED system, which Dr. Papay, our craniomaxillofacial surgeon
=
has done twice in the past year. We were excited that we won't have
to =
go so far away for this. The team is VERY concerned about Alex's airway,
=
as it is small and constricted. He will be starting on CPAP (forced
=
oxygen at night) as soon as possible, probably tomorrow, and if that
=
doesn't work they will have to trach him until the surgery is done.
They =
need 1-2 months to prepare everything for the surgery. They took the
=
dental molds and did a panorex x-ray today to start the process. We
go =
back in three weeks for another meeting for further planning. I am
not =
sure I am ready for all of this, but it has to be done for Alex's =
health.
Alex is having another hand surgery tomorrow here in Columbus
and I am =
worried that they will cancel it when the anesthesiologist finds out
=
about the sleep apnea. Anyone have any advice or experience with this?
=
Have any of you had to have surgery cancelled for this reason, or are
=
there extra precautions to take? Anyway, say a prayer for Alex tonight.
=
Alex will be crushed if he can't have the surgery. He wants 5 digits
so =
badly.
Judy, I'm sorry I haven't had a chance
to call you back yet. I =
will after the next few days are over.Send me a message if you want.
I =
would love to here the story you were going to tell me!
My best wishes and prayers go out to
you all and especially those =
having surgery. Take care. Amy Irvin
------=_NextPart_000_001C_01BE87CA.169416A0
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charset="iso-8859-1"
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<!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 size=3D2>Nicholas also will be having the RED System
surgery =
done this=20
summer (July 22). And a surgery to correct overlapping of
his =
fingers next=20
month (May 10). Amy, I know how you feel about not bing ready
for =
this...=20
I have never been really as nervous about any of his surgeries as I
am =
about the=20
RED System .... </FONT></DIV>
<DIV><FONT size=3D2>Carol</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:AIRVIN@COLUMBUS.RR.COM" =
title=3DAIRVIN@COLUMBUS.RR.COM>Amy</A>=20
</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> Thursday,
April 15, 1999 =
6:45=20
PM</DIV>
<DIV style=3D"FONT: 10pt arial"><B>Subject:</B> Alex
and RED =
system</DIV>
<DIV><BR></DIV>
<DIV><FONT color=3D#000000 size=3D2>Dear All, </FONT></DIV>
<DIV><FONT color=3D#000000 =
size=3D2>
As=20
I told you last week, Alex was diagnosed per sleep study with
=
moderate-severe=20
obstructive sleep apnea. Today we visited Cleveland Clinic to
=
see the=20
craniofacial team there for our yearly visit. Without going
into all =
the=20
details, Alex will have midface surgery this summer using the
RED =
system,=20
which Dr. Papay, our craniomaxillofacial surgeon has done twice
in the =
past=20
year. We were excited that we won't have to go so far away for
this. =
The team=20
is VERY concerned about Alex's airway, as it is small and constricted.
=
He will=20
be starting on CPAP (forced oxygen at night) as soon as possible,
=
probably=20
tomorrow, and if that doesn't work they will have to trach him
until =
the=20
surgery is done. They need 1-2 months to prepare everything
for the =
surgery.=20
They took the dental molds and did a panorex x-ray today to
start the =
process.=20
We go back in three weeks for another meeting for further planning.
I =
am not=20
sure I am ready for all of this, but it has to be done for Alex's=20
health.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Alex is having another
hand =
surgery tomorrow=20
here in Columbus and I am worried that they will cancel it when
the=20
anesthesiologist finds out about the sleep apnea. Anyone have
any =
advice or=20
experience with this? Have any of you had to have surgery cancelled
=
for this=20
reason, or are there extra precautions to take? Anyway, say
a prayer =
for Alex=20
tonight. Alex will be crushed if he can't have the surgery.
He wants 5 =
digits=20
so badly.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
Judy, I'm sorry =
I haven't=20
had a chance to call you back yet. I will after the next few
days are=20
over.Send me a message if you want. I would love to here the
story you =
were=20
going to tell me!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
My best wishes =
and prayers=20
go out to you all and especially those having surgery. Take
care. Amy=20
Irvin</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_001C_01BE87CA.169416A0--
=========================================================================
Date: Fri, 16 Apr 1999
09:12:50 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carol Graves
<tcgraves@BELLSOUTH.NET>
Subject: Attitude
MIME-Version: 1.0
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I woke up early today, excited over all I get to do before the clock
strikes midnight. I have responsibilities to fulfill today.
I am
important. My job is to choose what kind of day I am going to
have.
Today I can complain because the weather is rainy or ...
I can be thankful that the grass is getting watered for free.
Today I can feel sad that I don't have more money or ...
I can be glad that my finances encourage me to plan my purchases wisely
and guide me away from waste.
Today I can grumble about my health or ...
I can rejoice that I am alive.
Today I can lament over all that my parents didn't give me when
I was
growing up or ...
I can feel grateful that they allowed me to be born.
Today I can cry because roses have thorns or ...
I can celebrate that thorns have roses.
Today I can mourn my lack of friends or ...
I can excitedly embark upon a quest to discover new relationships.
Today I can whine because I have to go to work or ...
I can shout for joy because I have a job to do.
Today I can complain because I have to go to school or ...
eagerly open my mind and fill it with rich new tidbits of knowledge.
Today I can murmur dejectedly because I have to do housework or...
I can feel honored because the Lord has provided shelter for my mind,
body and soul.
Today stretches ahead of me, waiting to be shaped.
And here I am, the sculptor who gets to do the shaping.
What today will be like is up to me. I get to choose what kind of day
I
will have!
Have a GREAT DAY ... unless you have other plans.
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<DIV><FONT size=3D2>I woke up early today, excited over all I
get to do =
before the=20
clock<BR>strikes midnight. I have responsibilities to
fulfill =
today. =20
I am<BR>important. My job is to choose what kind of day I am going
=
to =20
have.<BR><BR>Today I can complain because the weather is rainy
or =
...<BR>I can=20
be thankful that the grass is getting watered for free.<BR><BR>Today
I =
can feel=20
sad that I don't have more money or ...<BR>I can be glad that my
=
finances=20
encourage me to plan my purchases wisely<BR>and guide me away from=20
waste.<BR><BR>Today I can grumble about my health or ...<BR>I
can =
rejoice that I=20
am alive.<BR><BR>Today I can lament over all that my parents
didn't give =
me=20
when I was<BR>growing up or ...<BR>I can
feel grateful that =
they=20
allowed me to be born.<BR><BR>Today I can cry because roses have
thorns =
or=20
...<BR>I can celebrate that thorns have roses.<BR><BR>Today
I can mourn =
my lack=20
of friends or ...<BR>I can excitedly embark upon a quest to discover
new =
relationships.<BR><BR>Today I can whine because I have to go to
work or =
...<BR>I=20
can shout for joy because I have a job to do.<BR><BR>Today I
can =
complain=20
because I have to go to school or ...<BR>eagerly open my mind and
fill =
it with=20
rich new tidbits of knowledge.<BR><BR>Today I can murmur dejectedly
=
because I=20
have to do housework or...<BR>I can feel honored because the Lord
has =
provided=20
shelter for my mind,<BR>body and soul.<BR><BR>Today stretches
ahead of =
me,=20
waiting to be shaped.<BR>And here I am, the sculptor who gets to
do the=20
shaping.<BR><BR>What today will be like is up to me. I get to
choose =
what kind=20
of day I<BR>will have!<BR><BR>Have a GREAT DAY ... unless
you have other =
plans.<BR><BR><BR></FONT></DIV></BODY></HTML>
------=_NextPart_000_0048_01BE87E9.4D675560--
=========================================================================
Date: Fri, 16 Apr 1999
11:48:07 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: # 2 Problem
In-Reply-To: <60982f74.24482ad5@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
> When we quit with the tea and gave her only
> apple juice, the problem cleared up. We had a time trying to
figure that one
> out, even her doctor didn't know what to do for her. I just
hated that she
> had to go through all that and I hate that Jake is having problems
with it
> now. Hope the information from all of us helps him.
Tea has a diuretic effect -- makes you urinate, so the
fluid isn't
available to keep the bowel contents soft. Apple juice has sugars
in
it that are hard for little people to digest, so it draws fluid into
the bowel and increases transit time at the same time.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Fri, 16 Apr 1999
13:58:30 -0500
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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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Alex and RED system
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit
Amy,
I can understand your feelings about Alex's airway. This is something
we've
had to deal with since Jake's been born. He was trached the day
after he
was born due to severe apnea. Right now, we are going through
several sleep
studies to find out whether or not we can remove his trach. His
ariway had
been lasered a couple of times (1st time was to remove tissue above
the
trach, and second was last Friday to open his airway even more).
In the beginning, the trach was very difficult to deal with. Even
now, some
days are hard, but we know it was in Jake's best interest having him
trached. We ARE planning on a mid-face advancement at the age
of 4-5, but
would really like to remove the trach before then - only if it's safe
to do
so.
Alex is in our thoughts and prayers. I remember talking with you
right
after Jake was born. It's nice to be able to talk again via the
Listserv.
Take care,
Liz Niemi
-----Original Message-----
From: Amy [SMTP:AIRVIN@COLUMBUS.RR.COM]
Sent: Thursday,
April 15, 1999 6:45 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Alex and RED system
Dear All,
As I told you last week, Alex was diagnosed per sleep study
with moderate-severe obstructive sleep apnea. Today we visited Cleveland
Clinic to see the craniofacial team there for our yearly visit.
Without
going into all the details, Alex will have midface surgery this summer
using
the RED system, which Dr. Papay, our craniomaxillofacial surgeon has
done
twice in the past year. We were excited that we won't have to go so
far away
for this. The team is VERY concerned about Alex's airway, as it is
small and
constricted. He will be starting on CPAP (forced oxygen at night) as
soon as
possible, probably tomorrow, and if that doesn't work they will have
to
trach him until the surgery is done. They need 1-2 months to prepare
everything for the surgery. They took the dental molds and did a panorex
x-ray today to start the process. We go back in three weeks for another
meeting for further planning. I am not sure I am ready for all of this,
but
it has to be done for Alex's health.
Alex is having another hand
surgery tomorrow here in Columbus and I
am worried that they will cancel it when the anesthesiologist finds
out
about the sleep apnea. Anyone have any advice or experience with this?
Have
any of you had to have surgery cancelled for this reason, or are there
extra
precautions to take? Anyway, say a prayer for Alex tonight. Alex will
be
crushed if he can't have the surgery. He wants 5 digits so badly.
Judy, I'm sorry I haven't had a chance to call you back yet. I
will after the next few days are over.Send me a message if you want.
I would
love to here the story you were going to tell me!
My best wishes and prayers go out to you all and especially
those having surgery. Take care. Amy Irvin
=========================================================================
Date: Fri, 16 Apr 1999
14:05:03 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Thank you so much for all the feedback regarding Jake's #2 problem.
We HAVE
been trying a lot of your suggestions already, but it sounds like pushing
the Apple Juice is the way to go. I'm going to try that, and
maybe more
bran muffins. We'll get this figured out. It just hurts
me to see him lift
his little legs and turn bright red when he's trying to go:-(!!
Thanks again everyone!
Liz
-----Original Message-----
From: jgibson2@EROLS.COM
[SMTP:jgibson2@EROLS.COM]
Sent: Friday,
April 16, 1999 6:48 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: # 2 Problem
> When we quit with
the tea and gave her only
> apple juice, the problem
cleared up. We had a time trying to
figure that one
> out, even her doctor didn't
know what to do for her. I just hated
that she
> had to go through all
that and I hate that Jake is having problems
with it
> now. Hope the information
from all of us helps him.
Tea has
a diuretic effect -- makes you urinate, so the fluid
isn't
available to keep the bowel
contents soft. Apple juice has sugars
in
it that are hard for little
people to digest, so it draws fluid into
the bowel and increases
transit time at the same time.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Fri, 16 Apr 1999
18:37:35 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: We are getting ready to
Celebrate!!!!!!
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Congratulations to the Zeith Family! I am really excited for you!
Keep
us informed on what's going on!
Joanne
=========================================================================
Date: Fri, 16 Apr 1999
21:07:42 EDT
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: Yonstein@AOL.COM
Subject: Re: We are getting ready to
Celebrate!!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Congratulations!! We will keep our fingers crossed that things go smoothly.
Keep us posted.
Janine Krebs
=========================================================================
Date: Fri, 16 Apr 1999
21:11:35 EDT
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: Yonstein@AOL.COM
Subject: Re: Alex and RED system
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
In a message dated 4/15/99 7:53:10 PM Eastern Daylight Time,
AIRVIN@COLUMBUS.RR.COM writes:
<< Dr >>
=========================================================================
Date: Fri, 16 Apr 1999
21:13:28 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Yonstein@AOL.COM
Subject: Re: Alex and RED system
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear Amy:
Oops, sorry about the other message.
How old is Alex now? The RED does sound scary. I guess it's
a good thing
because the breathing will be taken care of, but it is such a complex
procedure.
Will be thinking of you.
Janine Krebs
=========================================================================
Date: Fri, 16 Apr 1999
21:14:15 EDT
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Attitude
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Carol:
Love the poem on attitude. It's really true, it's all how we look at things!!
Thanks for sharing.
Janine
=========================================================================
Date: Fri, 16 Apr 1999
22:04:47 EDT
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HI ALL, CARLEE MAY GO HOME TOMORROW YEAH!!!!!!!! IT SURE IS TIRING TO
GO BACK
AND FORTH EVERY DAY TO THE HOSPITAL. SHE WAS DOING
PRETTY GOOD TO DAY.THE
EYES LOOK REAL GOOD NO BRUISING AT ALL WAS.SHE IS STILL A GOOD BABY.ALTHOUGH
THEY LET HER GET A PRESSURE SORE ON THE BACK OF HER HEAD, THE
PLASTIC
SURGEONS (INTERNS) SAID TAT THEY SHOULD have NEVER LET IT HAPPEN. WILL
WRITE
MORE LATER. LOVE MARILYN
=========================================================================
Date: Sat, 17 Apr 1999
15:09:29 +1200
Reply-To: Information exchange and Internet
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: RED system
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dear Amy and Carol and all those others in the queue
Our Amy is also in line for surgery - don't know whether it will be the RED system or standard distraction. Our surgeons have JUST done their second midface distraction procedure, so they aren't actually getting daily experience (1xApert, 1xCrouzon). Our turn, we think, will be end of this year/early next, and with all this talk about hands I am also having a closer look at her hands and realising something really should be done about them as well - but that can wait.
When this was first mooted last year I was thrown back into those ghastly nights at hospital where one gets little sleep, is divorced from real life, has little control on what is happening and feels one is just not coping. So I have been going to a counsellor who is letting me work through it all and helping me learn to concentrate on what I CAN do to cope, not the bits where I didn't feel I coped. I am sure it is helping, but the real test won't be until Amy has her op.
Anyway, what this is all about is that I can recommend you find someone skilled to help you work through all the historical stuff so that you are coping with here and now.
Thinking of you.
Ann
NZ
=========================================================================
Date: Sat, 17 Apr 1999
15:09:39 +1200
Reply-To: Information exchange and Internet
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Engineers
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I couldn't resist passing this on. From memory there are a number of engineer-fathers on this Listserve - this is for your wives.
*********************************************
Comprehending Engineers - Take One
*********************************************
Two engineering students were walking across campus when one said,
"Where did you get such a great bike?"
The second engineer replied, "Well, I was walking along yesterday minding my own business when a beautiful woman rode up on this bike. She threw the bike to the ground, took off all her clothes and said, "Take what you want."
The second engineer nodded approvingly, "Good choice; The clothes probably wouldn't have fit."
*********************************************
Comprehending Engineers - Take Two
*********************************************
An architect, an artist and an engineer were discussing whether it
was better to spend time with the wife or a mistress.
The architect said he enjoyed time with his wife, building a solid foundation for an enduring relationship.
The artist said he enjoyed time with his mistress, because of the passion and mystery he found there.
The engineer said, "I like both."
"Both?"
Engineer: "Yeah. If you have a wife and a mistress, they will each assume you are spending time with the other woman, and you can go to the plant and get some work done."
********************************************
Comprehending Engineers - Take Three
********************************************
What is the difference between Mechanical Engineers and Civil Engineers?
Mechanical Engineers build weapons, Civil Engineers build targets.
********************************************
Comprehending Engineers - Take Four
********************************************
The graduate with a Science degree asks, "Why does it work?"
The graduate with an Engineering degree asks, "How does it work?"
The graduate with an Accounting degree asks, "How much will it cost?"
The graduate with an Arts degree asks, "Do you want fries with that?"
********************************************
Comprehending Engineers - Take Five
********************************************
To the optimist, the glass is half full.
To the pessimist, the glass is half empty.
To the engineer, the glass is twice as big as it needs to be.
=========================================================================
Date: Sat, 17 Apr 1999
15:09:41 +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: Re: CARLEE'S SURGERY
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Great news. Congratulations to you all.
Regards
Ann, Howard and Amy
NZ
At 10:04 PM 16/04/99 EDT, you wrote:
>HI ALL, CARLEE MAY GO HOME TOMORROW YEAH!!!!!!!! IT SURE IS TIRING
TO GO BACK
>AND FORTH EVERY DAY TO THE HOSPITAL. SHE WAS DOING
PRETTY GOOD TO DAY.THE
>EYES LOOK REAL GOOD NO BRUISING AT ALL WAS.SHE IS STILL A GOOD BABY.ALTHOUGH
>THEY LET HER GET A PRESSURE SORE ON THE BACK OF HER HEAD, THE
PLASTIC
>SURGEONS (INTERNS) SAID TAT THEY SHOULD have NEVER LET IT HAPPEN.
WILL WRITE
>MORE LATER. LOVE MARILYN
>
>
=========================================================================
Date: Sat, 17 Apr 1999
08:40:17 EDT
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From: Jenngram@AOL.COM
Subject: Re: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Just another thought, my husband brough up a point after his Peds rotation
that I didn't even think about....Make sure their feet are on the ground
b/c
to get the bowels to relax and work, you have to relax the muscles
involved
which is best done by having your feet on the ground, or books stacked
up so
they reach the big potty.
Jenn (Tampa/St. Pete)
=========================================================================
Date: Sat, 17 Apr 1999
12:21:36 -0400
Reply-To: Information exchange and Internet
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Re: Alex and RED system
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Janine, Alex is 9 years old now.Thankd for the note. Amy
-----Original Message-----
From: Yonstein@AOL.COM <Yonstein@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, April 16, 1999 9:11 PM
Subject: Re: Alex and RED system
>Dear Amy:
>
>Oops, sorry about the other message.
>
>How old is Alex now? The RED does sound scary. I guess
it's a good thing
>because the breathing will be taken care of, but it is such a complex
>procedure.
>
>Will be thinking of you.
>
>Janine Krebs
>
=========================================================================
Date: Sat, 17 Apr 1999
16:33:25 EDT
Reply-To: Information exchange and Internet
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: (no subject)
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hi Everyone.
Ive just joined listserv, i have enjoyed reading all the mail. Its
really
nice to hear from other parents in the same situation. Aperts is not
well
known about in Wales , United Kingdom (thats were we're from) .
We have three children all boys , ages 12yrs,10yrs & 8yrs old, Richard
has
Aperts / Phieffiers syndrome. Richard has had quite a few operations
since he
was born , he is due to have another in the near future , on his leg
, due to
his knee cap/joint not growing properlly.
Richard is a sweet , loving boy and is coping very well with his condition.
Well bye for now.
Congrats on having the aperts pages(i wish there was more like this
over here)
Bye for now.
Sandra Andrew & Boys
=========================================================================
Date: Sat, 17 Apr 1999
23:57:18 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: RED system
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Same Here! Collin will be having the RED system surgery on June 2nd
in
Dallas. I am more nervous about this one than any before but
also excited
about the end results. We just got back from our "marathon" doctor
appointments (assessment with the team doctors) in Dallas. It is the
first
time we have seen Dr Fearon since 1997 (Collins last surgery)
Anyway, Collin
had to go to the Orthodontist for his "fitting" for the RED device.
They
took x-rays, pictures of the teeth & impressions. If any of you
has ever had
a crown you know they put the gook in your mouth that sets up &
when they
pull it out it feels like they are taking your teeth with them---well
they
had to do the top teeth twice and the bottom once. It was absolutely
horrible. Collin hates the dentist anyway so we literally had to hold
him
down to get the impressions. This was the worst thing we have ever
had to do.
Felt like we were betraying the little guy!! But he didn't hold it
against
us. He was fine after we left. Glad that is over. Then he had
the CAT scan,
eyes dilated & checked (for pressure behind the eyes-all fine here),
media,
anthrapology and Dr Fearon (surgeon). I think thats it. It was a long
2 days
especially after driving 14 hrs the day before. Never so glad to get
back
home in my own bed!!
Dr Fearon has done 12 RED's to date and is
very excited with the results
he is getting. What he does is bring the mid face out a little
too far
(overcompensating) so the lower jaw will catch up to it and hopefully
the
child won't ever have to have this done again. I saw pictures
of two of his
patients who have had it done & they look wonderful. WE also met
with the
Howingtons whose daughter has had this done. She is so beautiful. THe
system
has changed her looks tremendously, which is one of the things Melanie
(Howington) warned me about. She advices to prepare for the significant
change in their looks.
My prayers are with all that have had or are
going in for surgery!
Shirley Tanner
=========================================================================
Date: Sun, 18 Apr 1999
16:05:40 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: No Subject
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hello Everyone,
Just wanted to give a big Thank YOu for everyone praying for Carlee.
She did
very well on her first cranial surgery. We are glad to be home from
the
hospital. Were there for 6 days. Carlee is still a little swollen
but
looking much better. She is a little trooper, her Dr. said. HAHA!!
They were unable to do the back of her skull at this time. The neurosurgeon
said it was just to much to do at one time. Which we are glad they
didn't if
it was risky. Well again Thank You all so mach and we will pray
for all of
you as surgery times come.
Love,
The Williams Family
Slick, Cristy, and Carlee
=========================================================================
Date: Mon, 19 Apr 1999
12:36:29 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Pictures
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Lisa and Samantha!
We got your pictures in the mail!! Thank you for sending them.
I'm in the
process of getting some re-prints of Jake and will send them as soon
as
possible. Samantha is a little darling! Please write back
and give me you
e-mail address.
It's great that they share the same birthday!
I'll get those pictures out ASAP!
Thanks so much!
Liz & Jake Niemi
Liz.Niemi@nmb.norwest.com <mailto:Liz.Niemi@nmb.norwest.com>
=========================================================================
Date: Mon, 19 Apr 1999
20:31:04 EDT
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From: Yonstein@AOL.COM
Subject: Fwd: Hi
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Thought ALL mothers might enjoy this with Mother's Day so close to us all.
Best wishes and enjoy,
Janine
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Return-path: Chatrbx45@aol.com
From: Chatrbx45@aol.com
Full-name: Chatrbx45
Message-ID: <1720f78c.244a3626@aol.com>
Date: Sat, 17 Apr 1999 15:08:22 EDT
Subject: Hi
To: Yonstein@aol.com
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X-Mailer: AOL 4.0 for Windows 95 sub 246
Reply-To: Chatrbx45@aol.com
Thought U might like this...Its just in time for Mothers Day
Subject: Why mothers cry!
Why are your crying?" he asked his mom.
"Because I'm a mother" she told him
"I don't understand," he said
His mom just hugged him and said, "You never will"
Later the little boy asked his father why Mother seemed to cry
for no
reason.
"All mothers cry for no reason" was all his dad could say.
The little boy grew up and became a man, still wondering why mothers
cry. So he finally put in a call to God and when God got
on the phone
the man said "God, why do mothers cry so easily."
God said, "You see son, when I made mothers they had to be special.
I
made their shoulders strong enough to carry the weight of the
world,
yet gentle enough to give comfort. I gave them an inner
strength to
endure childbirth and the rejection that many times come from
their
children. "I gave them a hardiness that allows them to
keep going
when everyone else gives up, and to
take care of their families through sickness and fatigue
without
complaining. I gave them the sensitivity to love their children
under
all circumstances, even when their child has hurt them very badly.
This same sensitivity helps them to make a child's boo-boo feel
better
and helps them share a teenager's anxieties and fears.
I gave them a
tear to shed. It's theirs exclusively to use whenever it
is needed.
It's their only weakness. It's a tear for mankind".
Send this page to another Mother
--part1_1720f78c.244d24c8_boundary--
=========================================================================
Date: Mon, 19 Apr 1999
20:52:49 EDT
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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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Emily
MIME-Version: 1.0
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Hello all:
Well, we just had our team meeting today. While all of you guys
are
discussing the RED system, I didn't think I would have to think about
another
cranial surgery until midface. But, Emily's doctors want to do
a cranial
vault remodeling. The soft spots have not closed and to reshape
her head.
Of course, to us her head is shaped just fine the way it is.
The only good
thing is they said within the next year. That gives us some time,
however,
we will still be dealing with her hand surgeries since we started late
and
since our doctor does one finger, one side at a time.
Anyway, I thought writing this would help me digest it. Now I
think I will
put it on the back burner for a while and deal with our next surgery,
4-30,
which is eye muscle and hand together.
Glad to hear Carlee is doing well.
Best wishes to all going to and recovering from surgery.
Janine Krebs
PS. You should all be getting photos within the next day or so.
Overseas is
going out tomorrow. Enjoy them.
=========================================================================
Date: Mon, 19 Apr 1999
21:28:01 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Pictures
MIME-Version: 1.0
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To the Krebs Family,
I just wanted to Thank You for the pictures we received today. Emily
sure is
a cutie pie. We are still getting some copied to send to everyone.
We have
been kind of busy, since Carlee's cranial surgery was last Monday.
We look
forward to everyone else's pictures also for Carlee's scrap book.
Cristy and Carlee
in Florida
=========================================================================
Date: Mon, 19 Apr 1999
22:03:47 +0000
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: Emily
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hello everyone!
Plans for my trip to Florida are still in the making. I'm free
after the
middle of May, so sometime soon there after, I should be heading down.
I recieved Emily's picture today - I love her curls! I have to
pay for
mine! You are a beautiful family! Thanks for the group
shot! If anyone
out there received my picture in the first go around, I have not changed
much. I will probably send pictures to those who have not gotten
one
yet. If I stumble on some cold cash I might haul Coal to the
photographer and have a "family" picture taken, then I will have a
valid
reason to send everyone a picture. You just have to "see" this
cutie of
mine!
Joanne
=========================================================================
Date: Mon, 19 Apr 1999
23:22:37 -0500
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: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Emily
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Janine!
We received your pictures! They're great! Thank you so much.
I'm in the
process of getting re-prints done of Jake. I'll try to send them
ASAP!
Thanks again,
Liz Niemi and Family
-----Original Message-----
From: Yonstein@AOL.COM
[SMTP:Yonstein@AOL.COM]
Sent: Monday,
April 19, 1999 7:53 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Emily
Hello all:
Well, we just had our team
meeting today. While all of you guys are
discussing the RED system,
I didn't think I would have to think
about another
cranial surgery until midface.
But, Emily's doctors want to do a
cranial
vault remodeling.
The soft spots have not closed and to reshape her
head.
Of course, to us her head
is shaped just fine the way it is. The
only good
thing is they said within
the next year. That gives us some time,
however,
we will still be dealing
with her hand surgeries since we started
late and
since our doctor does one
finger, one side at a time.
Anyway, I thought writing
this would help me digest it. Now I think
I will
put it on the back burner
for a while and deal with our next
surgery, 4-30,
which is eye muscle and
hand together.
Glad to hear Carlee is doing well.
Best wishes to all going to and recovering from surgery.
Janine Krebs
PS. You should all
be getting photos within the next day or so.
Overseas is
going out tomorrow.
Enjoy them.
=========================================================================
Date: Mon, 19 Apr 1999
23:26:11 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: # 2 Problem
MIME-Version: 1.0
Content-Type: text/plain
Don & Cathie,
Would you please e-mail me the list of names for the picture exchange?
I do
not have direct access to the Internet, therefore I need it in WORD
format,
or something else comparable.
Thanks so much!
Liz Niemi
-----Original Message-----
From: Irmocat2@AOL.COM
[SMTP:Irmocat2@AOL.COM]
Sent: Friday,
April 16, 1999 12:56 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: # 2 Problem
Hi Liz,
Teeter had a really bad
problem with constipation when she was 3 or
4. We
tried everything for about
6 months. She even got hemorroids from
it (which
she still has). We
noticed that she loved sweet iced tea and drank
that all
the time instead of apple
juice. When we quit with the tea and gave
her only
apple juice, the problem
cleared up. We had a time trying to figure
that one
out, even her doctor didn't
know what to do for her. I just hated
that she
had to go through all that
and I hate that Jake is having problems
with it
now. Hope the information
from all of us helps him.
Cathie
=========================================================================
Date: Tue, 20 Apr 1999
10:00:36 -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: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Respose to Joanne
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Christine:
We hope you are feeling better. We too enjoy your newsletters and look
forward to receiving them.
The Bradley's
Algonquin, IL
=========================================================================
Date: Tue, 20 Apr 1999
10:24:27 -0400
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: (no subject)
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Sandra & boys:
Welcome to the listserv.
The Bradley's
Algonquin, IL
=========================================================================
Date: Tue, 20 Apr 1999
19:37:20 -0500
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Sender: Information exchange and
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Pictures of Lisa
MIME-Version: 1.0
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boundary="----=_NextPart_000_0017_01BE8B65.34B22340"
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charset="iso-8859-1"
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This is Deb Picht from Minnesota. I too have sent out some pictures
but =
am also getting more copies made. The picture of Lisa is a studio
=
picture and they told me it would be 2 weeks.
Will get them mailed as soon as I get them. I had another 40+
made
------=_NextPart_000_0017_01BE8B65.34B22340
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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>This is Deb Picht from =
Minnesota. I too=20
have sent out some pictures but am also getting more copies made.
=
The=20
picture of Lisa is a studio picture and they told me it would be 2=20
weeks.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Will get them mailed as soon
as I =
get=20
them. I had another 40+ made</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV> </DIV></BODY></HTML>
------=_NextPart_000_0017_01BE8B65.34B22340--
=========================================================================
Date: Tue, 20 Apr 1999
22:19:43 EDT
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: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Emily
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Janine,
Got your pictures of Emily & family.
She is a beautiful little girl. I
will be sending Collins out soon. Have been quite busy with our
travels &
now company is coming.
I will keep Emily in my prayers for her upcoming surgery.
Take care,
Shirley Tanner
=========================================================================
Date: Tue, 20 Apr 1999
22:23:49 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: No Subject
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hi Christy,
Glad to hear Carlee is doing well & the
surgery is over. It is always
such a stressful time!
Take care,
Shirley Tanner
(mom of Collin)
=========================================================================
Date: Tue, 20 Apr 1999
22:26:12 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Emily
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HI JANINE AND EMILY, GOT THE PICS AND WANT TO THANK YOU VERY MUCH FOR
THEM.
EMILY , YOU ARE A DOLL AND SO IS YOUR BIG BROTHER. TAKE CARE. LOVE
MARILYN
--- OUR PRAYERS ARE WITH YOU ON YOUR SURGERIES, CRANIAL VAULT IS WHAT
CARLEE,
JUST HAD.
=========================================================================
Date: Wed, 21 Apr 1999
14:43:44 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Glad to here that Carlee is doing so well,,,,,,,,, I'm a bit shocked
at the
pressure sore, I'm a Nurse and I have a real thing about pressure sores,
how are they teating it??
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, post hemi fontan for tricuspid atresia,
CDLS,
Reflux etc......
Awaiting the adoption of Laura, 16 months, Apert syndrome, cleft palate.
=========================================================================
Date: Thu, 22 Apr 1999
00:04:58 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: what is the world coming to!!!!!
Comments: To: pdheart letters <pdheart@tchin.org>,
fostercare list
letters <fphp@egroups.com>
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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The news that woke me this am, brought tears to my eyes and left a ache
in
my heart for the families involved in the shooting in colorado, I then
cried my heart out when I saw the visions on the TV this afternoon,
No
child or parent should have to go though this, We pray that all the
people
involved in this tradgey, have the support and faith to make it though
this.
I recently read the Auto Bio By Walter Mikac, the father that lost his
whole family in the Port Authur Shootings, nearly 3 years ago, He is
a
amazing man, That has suffered so much, but continues to love living,
I
hope that some good can come out of something so crazy, and this community,
can get though this.
Why, why, why, did this happen? is it something we are all doing
wrong???????????
Praying our hearts out for all of the families invloved.
Nicki and family, Australia.
=========================================================================
Date: Wed, 21 Apr 1999
08:01:47 -0600
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: SHOOTING IN COLORADO
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
We always have had kids in schools that were not athletes or in the
popular
crowd or were even teased by the in-crowd, but they made it through
without
violence and they became stronger adults with compassion. I feel
a lot of
our problems is we have taken GOD out of our schools! Kids have
no were to
turn like prayer. There are many other contributing factors,
but this is a
big one. What do you think?
Denise
=========================================================================
Date: Wed, 21 Apr 1999
11:20:37 EDT
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Sender: Information exchange and
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From: GSieb91515@AOL.COM
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Denise,
I agree. That is one of the main reasons my daughter attends a
private
christian school. It is a financial burden every year to come
up with the
tuition but I feel very strongly about the christian values she is
learning.
She loves it there and when ever we talk about a time when she may
have to go
to public school she always comments "but mom you can't pray in public
school". That's coming from a 9 year old. I know some of
these troubled
kids must really have a medical (chemical imbalance ?) condition that
has
never been treated that would make them do such a horrible thing to
take
human lives. This should be a time for every family to take a
good look at
what's going on in their own children's lives. What a tragedy.
We pray that
these families can ask God for strength to get through this.
Brenda
Houston
=========================================================================
Date: Wed, 21 Apr 1999
10:47:10 -0500
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Susan Peck <Susan.Peck@PARKVIEW.COM>
Subject: my son ryan
MIME-Version: 1.0
hello, everyone. may name is susan peck and i have a son ryan
who will
be 5 on sunday, april 25, with aperts syndrome. he is an incredible
little
guy who brings us much joy with his enthusiasm and great sense of humor.
we also have 2 daughters, holly and jilliann, ages 8 and 7. ryan has
had
4 craniectomies, 2 syndactylly releases, a t&a, 2 sets of tubes
in his ears
and is having surgery this friday to start expanding his palate. he
was
also born with fused elbows, they are fused at 180 degrees. he fell
two
times last summer and fractured his right arm both times at the elbow
and we were able to fuse it bent at about 110 degrees, which helps
with
him feeding himself. if anyone has any information with help with the
elbows, let me know. a friend who has internet access found all of
you
for me and i am thrilled. i just receive basic e-mail at my work and
would be very interested in being in your picture exchange if you could
tell me how. i know all of our children our very special and
i feel
truely blessed to find such a supportive group. i look forward to hearing
from all of you!!!
=========================================================================
Date: Wed, 21 Apr 1999
10:49:18 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: my son ryan
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Welcome Susan~
so glad you find us. there is alot of different kinds of disscusions
here so
there is something for everyone.
Hope all is well with you and ours :)
Dawn Jennerjohn
=========================================================================
Date: Wed, 21 Apr 1999
14:06:25 -0500
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: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: my son ryan
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Welcome to the family Susan!! Unfortunately, I do not have any
information
regarding the fusion of elbows. Sounds like Ryan is a great little
guy!
Liz Niemi (mom of Jake, 17 mos. w/Apert's)
-----Original Message-----
From: Susan
Peck [SMTP:Susan.Peck@PARKVIEW.COM]
Sent: Wednesday,
April 21, 1999 10:47 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
my son ryan
hello, everyone.
may name is susan peck and i have a son ryan who
will
be 5 on sunday, april 25,
with aperts syndrome. he is an incredible
little
guy who brings us much joy
with his enthusiasm and great sense of
humor.
we also have 2 daughters,
holly and jilliann, ages 8 and 7. ryan has
had
4 craniectomies, 2 syndactylly
releases, a t&a, 2 sets of tubes in
his ears
and is having surgery this
friday to start expanding his palate. he
was
also born with fused elbows,
they are fused at 180 degrees. he fell
two
times last summer and fractured
his right arm both times at the
elbow
and we were able to fuse
it bent at about 110 degrees, which helps
with
him feeding himself. if
anyone has any information with help with
the
elbows, let me know. a friend
who has internet access found all of
you
for me and i am thrilled.
i just receive basic e-mail at my work and
would be very interested
in being in your picture exchange if you
could
tell me how. i know
all of our children our very special and i feel
truely blessed to find such
a supportive group. i look forward to
hearing
from all of you!!!
=========================================================================
Date: Wed, 21 Apr 1999
17:48:40 EDT
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: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I think the problem is that parents & children don't communicate
enough.
Those two kids were making pipe bombs and stockpiling ammunition in
the
parents' garage! How could that happen if the parents & children
were
talking & communicating on a daily basis? If the kids were
mentally ill, the
parents surely should have noticed.
Some kids also told the sheriff about threats these 2 boys made to
them and
the sheriff dept didn't do anything. The sheriff dept could have
informed
the school, the parents, teachers or counselors, yet didn't.
This is what
happens when children are ignored.
Of course, I only have a 2 month old and I have no experience w/ teenagers.
I just remember what it was like. It's hard being in high school.
Karin Pittman
Denver, Colorado
=========================================================================
Date: Wed, 21 Apr 1999
17:26:34 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
I agree! I also heard on the news that one of the boys made up
a "hate"
website using his father's software on his computer! If you were
the
parent, wouldn't you be curious what your child is "in to" on the Internet,
not to mention in the garage?? There are so many problems with
kids having
access to the Internet. Wouldn't you think the parents would
have some
concern or interest as to what their children were doing on the Internet?
Makes me sick. I pray for the parents and families of these children.
There is no sense to this.....and no excuse!
-----Original Message-----
From: Karin
Pittman [SMTP:KMea854818@AOL.COM]
Sent: Wednesday,
April 21, 1999 4:49 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: SHOOTING IN COLORADO
I think the problem is that
parents & children don't communicate
enough.
Those two kids were making
pipe bombs and stockpiling ammunition in
the
parents' garage! How
could that happen if the parents & children
were
talking & communicating
on a daily basis? If the kids were mentally
ill, the
parents surely should have
noticed.
Some kids also told the
sheriff about threats these 2 boys made to
them and
the sheriff dept didn't
do anything. The sheriff dept could have
informed
the school, the parents,
teachers or counselors, yet didn't. This
is what
happens when children are
ignored.
Of course, I only have a
2 month old and I have no experience w/
teenagers.
I just remember what it
was like. It's hard being in high school.
Karin Pittman
Denver, Colorado
=========================================================================
Date: Wed, 21 Apr 1999
19:22:35 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
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Denise,
I agree with you 110% now a days with all this freedom to do this and
freedom
to do that and all this red tap about peoples rights etc., etc.,
has all
amounted to loss of morals, scruples, decency and most of all faith
in the All
Mighty God. If this country would actually practice what it stands
for IN GOD
WE TRUST I can guarantee we would be a whole lot better. Just my two
cents
worth!!!
Raquel Miller
Chad & Denise Graham wrote:
> We always have had kids in schools that were not athletes or in the
popular
> crowd or were even teased by the in-crowd, but they made it through
without
> violence and they became stronger adults with compassion. I
feel a lot of
> our problems is we have taken GOD out of our schools! Kids
have no were to
> turn like prayer. There are many other contributing factors,
but this is a
> big one. What do you think?
>
>
Denise
=========================================================================
Date: Wed, 21 Apr 1999
19:37:39 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome Peck Family
MIME-Version: 1.0
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Hi Susan,
First of all let me introduce myself, my name is Raquel Miller my
husbands name is Jack. We have four children Michelle 15, Steven
11,
Erica 41/2 and Nicole 181/2 months old with Aperts. She is wonderful
and I hate to say very spoiled.
I want to welcome you to our family, you will find this listserv very
helpful as far as support and questions you may have Apert related
or
not. I am very glad we joined over a year ago and could not imagine
not
being in communication with everyone.
Again welcome and don't be a stranger.
Raquel Miller in still dry South Florida...
=========================================================================
Date: Wed, 21 Apr 1999
18:46:52 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
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I agree. This whole act was preventable. The students should
have been
taken out of school and put in some kind of a boys school or something.
So many innocent children killed. Totally senseless.
Just yesterday after this occured we had a bomb threat at a University
here
in our town. Everyone was evacuated and sent over to a mall.
Afternoon and
evening classes were cancelled.
What makes people go over the edge? I don't understand it and
never will.
I am the youngest of 11 children with 7 older brothers. Did I
get teased?
You bet I did but back in my day in school you never ever heard of
anything
like this.
No matter how hard we try protect our children, it is not always
possible.
You never know what is going to happen next.
That's my 2 cents
Deb Picht
-----Original Message-----
From: Chad & Denise Graham <cgraham@INFOAVE.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, April 21, 1999 8:41 AM
Subject: SHOOTING IN COLORADO
>We always have had kids in schools that were not athletes or in the
popular
>crowd or were even teased by the in-crowd, but they made it through
without
>violence and they became stronger adults with compassion. I
feel a lot of
>our problems is we have taken GOD out of our schools! Kids have
no were to
>turn like prayer. There are many other contributing factors,
but this is a
>big one. What do you think?
>
>
>
Denise
>
=========================================================================
Date: Wed, 21 Apr 1999
21:40:03 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: CARLEE'S SURGERY
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Nicki,
We take Carlee back tomorrow for them to look at the pressure
sore again.
They gave us some bandages to put on the area, called DuoDerm. But
it really
looks bad. There is a raised spot that almost looks like the bone is
swollen.
I will know more tomorrow.
Hope all goes well with Laura. Keep us informed.
Cristy and Carlee
In Florida
=========================================================================
Date: Wed, 21 Apr 1999
21:48:53 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: my son ryan
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Welcome Susan and Ryan,
Glad you found this great group of people. We really have appreciated
it. We
are the Williams family. Carlee is our little girl 10 mos. old with
aperts.
She just had her first cranial surgery last Mon. April 12th and is
recovering
great. These kids are amazing. Hope to talk with you more.
Cristy and Carlee
in Florida
=========================================================================
Date: Thu, 22 Apr 1999
11:40:04 +0900
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: "Tim O. Yenney"
<toyenney@URIEL.NET>
Subject: Re: my son ryan
MIME-Version: 1.0
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Hi Susan:
My name is Bea Yenney and we live in Korea. We have a 6 year old
daughter
with Aperts. Both her elbows are fused at about 45 degree angles.
She goes
to school, feeds herself. This listserve has been great.
So much support
from everyone. Our doctor has said they don't hold much
chance in helping
Sarah with her elbows, but you never know. Good luck.
Bea Yenney
-----Original Message-----
From: Susan Peck <Susan.Peck@PARKVIEW.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, April 22, 1999 12:59 AM
Subject: my son ryan
> hello, everyone. may name is susan peck and i have a son ryan
who will
>be 5 on sunday, april 25, with aperts syndrome. he is an incredible
little
>guy who brings us much joy with his enthusiasm and great sense of
humor.
>we also have 2 daughters, holly and jilliann, ages 8 and 7. ryan has
had
>4 craniectomies, 2 syndactylly releases, a t&a, 2 sets of tubes
in his ears
>and is having surgery this friday to start expanding his palate. he
was
>also born with fused elbows, they are fused at 180 degrees. he fell
two
>times last summer and fractured his right arm both times at the elbow
>and we were able to fuse it bent at about 110 degrees, which helps
with
>him feeding himself. if anyone has any information with help with
the
>elbows, let me know. a friend who has internet access found all of
you
>for me and i am thrilled. i just receive basic e-mail at my work and
>would be very interested in being in your picture exchange if you
could
>tell me how. i know all of our children our very special and
i feel
>truely blessed to find such a supportive group. i look forward to
hearing
>from all of you!!!
>
=========================================================================
Date: Wed, 21 Apr 1999
22:28:56 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: foster <foster@ICONTECH.COM>
Subject: Shootings
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What an awful and totally heart breaking thing to have to bare.I don't
think
there is a mother or father anywhere who does not feel this tragedy.
As a
mother I have shed a good amout of tears over this. I agree with most
of the
things I have read. As a mom of three teenagers I worry so much already
with
all of the crazy things that seem to go on these days. But I have to
say
that parents can not know what is happening all of the time and there
is so
much to keep up with. There is so much we can not controll no matter
how
hard you try.I feel that some of the problem is also drugs. No one
in their
right mind could do something this insane without someything else being
envolved. I am not saying this is always the problem but I do think
it is a
factor. A good parent teaches their children all of the right things
and
teaches them the love of God. And send them out into the world knowing
that
they are doing the best they can. Why then do some kids go so wrong?
We will
never know for sure.
I can not express how badly I feel for these kids and parents in Colorado
but when I pray for them I have to also pray for the parents of these
two
boys who have done this terrible thing. I can not even begin to imagine
how
they must feel. How can a parent live with this kind of guilt? They
have
also lost their children and have to carry the the