Hi Patty!
We have a 17 month old son, Jake with Apert Syndrome. We also
have a 3 ½
year old girl named Taylor. We absolutely LOVE this Listserv!!
It's a
great place, whether your 24 or 4. Please don't hesitate to contact
us when
you need a little support. You sound like a wonderful person!
As parents
with young Apert children, we rely on you for your input and insight.
You
are wanted and needed here. Please don't forget that!
Liz, Steve, Taylor and Jake Niemi
-----Original Message-----
From: Patricia
Mc Donald [SMTP:goofy@WCOIL.COM]
Sent: Thursday,
April 22, 1999 12:59 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Searching for a friend
Hello Everyone!
My name is Patty McDonald. I am 24 years old and have Apert
Sydrome. I have just recently joined the list serv,and have found it
very
interesting. I have read many of your letters talking of different
difficulties as well as accomplishments with Aperts! I feel as though
I know
all those with Aperts..I have gone through almost everything they have.
Now
as I'm older I still find it hard sometimes to live with it. Lonliness
and
depression. So I am looking for anyone around my same age to form a
friendship with. If you are interested please e-mail me at goofy@wcoil.com
<mailto:goofy@wcoil.com> would love to hear from you!
Sincerely,
Patty
McDonald-from Ohio
=========================================================================
Date: Thu, 22 Apr 1999
00:57:18 -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: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Patty...
Just wanted to say hello and welcome to the group.
I am Mark, 35yr old single person with Aperts.please feel
free to =
email me privately if you wish.
Take care...
Mark
I'd also like to extend a welcome to Susan, glad you and Patty
found =
us.
----------
From: Patricia Mc Donald
Sent: Thursday, April 22, 1999 12:58 AM
To: APERT@LISTSERV.AOL.COM
Subject: Searching for a
friend
<<File: ATT00000.htm>>
Hello Everyone!
My name is Patty McDonald.
I am 24 years old and have Apert =
Sydrome. I have just recently joined the list serv,and have found it
=
very interesting. I have read many of your letters talking of different
=
difficulties as well as accomplishments with Aperts! I feel as though
I =
know all those with Aperts..I have gone through almost everything they
=
have. Now as I'm older I still find it hard sometimes to live with
it. =
Lonliness and depression. So I am looking for anyone around my same
age =
to form a friendship with. If you are interested please e-mail me at
=
goofy@wcoil.com would love to hear from you!=20
Sincerely,
Patty =
McDonald-from Ohio
=========================================================================
Date: Thu, 22 Apr 1999
01:13:31 -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: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello....
I feel along with God being excluded in school, another factor
is the =
programming that is on television these days, parents need to
be much =
more selective about what kids see, as there is alot of violence. The
=
movies etc.. "make it all look cool" when quite obviously, that type
of =
behavior has no place in society.
Mabe a five minute session( quiet time...prayer time..which
ever) both =
at the beginning and at the end of the day at school would be the =
answer, so kids could have time just to think or pray..spending the
time =
quietly, but as they choose.
=20
Mark
=20
----------
From: Chad & Denise Graham
Sent: Wednesday, April 21, 1999 9:01 AM
To: APERT@LISTSERV.AOL.COM
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: Thu, 22 Apr 1999
23:33:47 -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: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
I'm intrested in what they say about the sore today, Email me when you
here,
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, post fontan for tricuspid atresia, completion
due following Cath sometime after June 1999. Newly diagnosed CDLS,
Reflux,
peg fed, Nissen fundo op end of March.
Awaiting the arrival of little Laura, 16months, Apert syndrome. count
down
has begun!!!!!!!!!!
=========================================================================
Date: Thu, 22 Apr 1999
23:52:57 -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: tony zieth <zieth@HOTNET.COM.AU>
Subject: Picture exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
now that our adoption of Laura is going ahead, we really want to be
involved with the picture exchange, I have listed our address on the
exhange list, I just can't wait to be able to send Laura, first photo
as
our daughter back to you guys, hopefully this will be by the end of
May or
early June.
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, Awaiting Laura also 16months(apert syndrome)
coming to us though the miracle of adoption.
=========================================================================
Date: Thu, 22 Apr 1999
16:30:39 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: GSieb91515@AOL.COM
Subject: Re: We are home early!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Thanks so much for the info. Hope everyone is doing better and
that Teeter's
ear infections have healed. Jonathan has tubes in his ears and
the left ear
is draining. It is infected but because he has tubes it doesn't
settle
behind the drum but drains out. It has been a few days now on
the antibiotic
and his ear is still draining. I think it's time to go back in
and take a
better look see.
Anyway, I am going to work on reservations this week end and hope to
get in
at the Crown Reef. Hope they aren't filled up yet. We look
forward to
meeting everyone in person. It's going to be a really special
time for all
of us.
Brenda
Houston
=========================================================================
Date: Thu, 22 Apr 1999
14:42:39 -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: jeany pak <shuijeanpak@YAHOO.COM>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi'
My name is Jeany Pak I'm 27 year old girl who live in Canada and has
4
sisters and two brothers I'm youngest and the only one has apert's
syndrome.I hope to hear from you soon.
Jeany Pak
--- Patricia Mc Donald <goofy@WCOIL.COM> wrote:
> Hello Everyone!
> My name is
Patty McDonald. I am 24 years
> old and have Apert Sydrome. I have just recently
> joined the list serv,and have found it very
> interesting. I have read many of your letters
> talking of different difficulties as well as
> accomplishments with Aperts! I feel as though I know
> all those with Aperts..I have gone through almost
> everything they have. Now as I'm older I still find
> it hard sometimes to live with it. Lonliness and
> depression. So I am looking for anyone around my
> same age to form a friendship with. If you are
> interested please e-mail me at goofy@wcoil.com would
> love to hear from you!
>
Sincerely,
>
> Patty McDonald-from Ohio
>
<HR>
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=text/html;charset=iso-8859-1 http-equiv=Content-Type>
<META content='"MSHTML 4.72.3110.7"' name=GENERATOR>
</HEAD>
<BODY bgColor=#ffffff>
<DIV><FONT color=#000000 size=2>Hello Everyone!</FONT></DIV>
<DIV><FONT color=#000000
size=2>
My name is Patty McDonald. I am 24 years old and have Apert Sydrome.
I
have just
recently joined the list serv,and have found it very interesting. I
have read
many of your letters talking of different difficulties as well as
accomplishments with Aperts! I feel as though I know all those with
Aperts..I
have gone through almost everything they have. Now as I'm older I still
find it
hard sometimes to live with it. Lonliness and depression. So I am
looking for
anyone around my same age to form a friendship with. If you are
interested
please e-mail me at <A
href="mailto:goofy@wcoil.com">goofy@wcoil.com</A> would
love to hear from you! </FONT></DIV>
<DIV><FONT color=#000000
size=2>
Sincerely,</FONT></DIV>
<DIV><FONT color=#000000
size=2>
Patty McDonald-from Ohio</FONT></DIV></BODY></HTML>
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Thu, 22 Apr 1999
17:51:51 -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: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Shootings
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I agree with those who have stated that a lack of religion may be a
factor...but how about GUNS! Until Americans realize that the right
to
bear arms is a MAJOR CONTRIBUTING FACTOR to people getting shot...the
senseless violence will continue. Each day in the USA hundreds of people
are shot..why..people have guns!
I haven't heard one word from the US media...including the President
...that maybe there are too many guns in circulation?
Thank GOD..for Canada's approach to gun control. If you really
care for
your citizens who are dying everyday because of guns....ask your
politicians to reverse a senseless "we must have a gun" attitude that
seems to be so prevelant in the USA!!
You cannot legislate or keep from some nut from doing harm if they
really want to..but perhaps a tighter control on guns would be a start.
If you don't beleive me ...look at the stats between Canada and the
US
on crime, murder and assaults where a gun was used!
=========================================================================
Date: Wed, 21 Apr 1999
19:18:11 +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: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Shocked is a good adjective to use to explain how I am feeling today.
I
feel for you Karin, you live really close to where the shooting took
place. One of my coworkers brought up something I thought about
but
haven't pinpointed how I feel about it. She said the parents
of the
suspects are going to live not only through their grief plus with the
torments from the community. At first I hearing that the suspects
were
killed, I wanted to hold their parents accountable for the crime.
I
forgot they lost too. Then I think about the suspects lifestyles.
What
kind of relationship did they have with their parents?
Earlier this week two parents went to jail here in Ohio for keeping
their
4 children (4-17 years old) locked up and secluded from the outside
world. Along with their nutritional problems and psychological
problems,
the kids cannot speak English. They have developed their own
language.
They have been deprived of their childhood and their life.
Something is wrong somewhere. I believe whole heartily lacking
a
relationship with God is a huge part of the problem.
Joanne
=========================================================================
Date: Thu, 22 Apr 1999
18:41:52 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: Dana White <Danabrger@AOL.COM>
Subject: Thank you
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear Everyone on the Apert Listserv,
I wanted to take an opportunity to thank each of you for the warm welcome
and
kind notes. I have enjoyed reading the daily digest and the stories
on
Teeter's Page as well as seeing pictures of kids that resemble me in
some
fashion. The stories on the listserv have brought back many memories
for me.
Both good and bad.
While I hated attending all those doctor's appointments and sitting
in those
clinics (which lasted all day), I have to say those were definite
bonding
opportunities for me and mom. She would always treat us to White
Castle
hamburgers when we ventured to sneak away from the clinic knowing my
name
would likely not be called for hours.
I will continue to enjoy reading the digest daily and chime in from
time to
time if I have something to add. After having experience on both
sides of
the health care fence, my advice to each of the parents is to stay
informed,
ask lots of questions, take notes, and don't assume the doctor's are
infallible. I also want to stress the importance of taking care
of
yourselves. For example, if your child is going to the
hospital for
surgery, try not to stay 24/7. Plan a break by having another
family member
or friend stay with your child so you can get an occasional good night
sleep,
a solid meal, shower and do something relaxing to regenerate yourself.
This
is so hard for the families I work with but so very important.
Please feel free to ask questions on the listserv or email me directly.
I
will be honest in my answers. I am in a good place in my life
but it took
love, willpower and lots of tears. My thoughts and prayers are
with you all.
Take care.
Sincerely,
Dana White
Louisville, KY
Danabrger@Aol.com
=========================================================================
Date: Thu, 22 Apr 1999
19:13:07 +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>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: This and That from Guyettes
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hello out there!
Hey Lisa, I admire your efforts to have stuff ready for Samantha if
and
when she wants it. I wish my parents had some stuff. There
are very few
pictures of me as an infant and almost nothing about what I went through.
I called my pediatrician a few years ago and he sent me some
pictures of
my hands before they separated my thumbs. It's interesting to
me and
gives some degree of identity.
Hello and welcome to the newcomers. My name is Joanne and I'm
34 with
Aperts. Patty, feel free to e-mail me whenever. I can relate
with you
about the loneliness and depression. I hope I can help.
By the way..
I'm in Ohio too! Where are you?
My mom and I are walking in the March of Dimes Walk America. We
are
competing against each other to see who raises the most money.
My goal
is $500.00. I had it at $100.00 but that was almost too easy.
I have a
feeling I'm "cashing in" on my disability. They see me and hear
"March
of Dimes" and wallet comes out. With the risk of being presumptuous
and
having someone yell at me about soliciting.. I am taking any and all
donations I can get. I need the donation by April 30 please.
Hope all is well!
Joanne
=========================================================================
Date: Thu, 22 Apr 1999
19:47:59 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: Jenngram@AOL.COM
Subject: Jordans surgery
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I just wanted to ask everyone to say a small prayer tonite for Jordan
(and us
as well) as he is heading BACK in for hand surgery tomorrow morning.
This
will be our final finger release and its to separate and create the
middle
and ring finger on the left hand.
I am nervous, and not sure why....the older he gets the more anxious
I
become...
Thanks in advance for adding us to ya'lls prayer list
Jenn(Tampa/St. Pete)
=========================================================================
Date: Thu, 22 Apr 1999
21:10:13 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: Yonstein@AOL.COM
Subject: Re: Jordans surgery
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Jenn:
We wil be sending out prayers for Jordan for a successful surgery and
speedy
recovery. You're probably more nervous because you have 18 different
things
going on with moving and packing and worrying about Jordan.
Take care of yourself, too.
Janine
=========================================================================
Date: Thu, 22 Apr 1999
21:11:52 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: Yonstein@AOL.COM
Subject: Re: my son ryan
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HAPPY 5TH BIRTHDAY RYAN!!
Welcome Peck family. We are the Krebs, Brian, Janine Nicholas
and Emily (21
month old with Aperts). We live in New York. I am sure
you will find this
list to be as helpful and informative as we have. It's a great
group of
people.
Best wishes,
Janine Krebs
=========================================================================
Date: Thu, 22 Apr 1999
21:46:04 -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: foster <foster@ICONTECH.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Jenn,
We will be praying for Jordan tomorrow and all of the others who are
having
surgery in the up comming weeks. Try to keep your spirits up and soon
this
to will be behind you. Let us know how things go.
Brenda,
Sorry to hear Jonathan is having so much trouble with those ears. When
Billy
had both of his ears infected a few months ago they got so bad that
the
draining was so bad I could not keep up with them. There was even some
blood
streaks mixed in with all of the other yuk. After the first round of
antibiotics they were no better so we took him to an ENT up here who
is a
kind of stand by since his ENT is down Hershey. He said when the ears
get so
bad the antibiotics are not enough and he drained them right there
in his
office and gave him some drops for his ears along with the antibiotics.
I
was worried about the tubes comming out while he suctioned them and
of
course they didn't. What a big difference it made.Within a few days
the
draining was gone. When I took him back they were healed. The ENT said
he
still wanted him to take another week of antibiotics because they have
found
that it seemed to stop them from becomming infected again after they
were so
bad. It worked. he has had a few more since then but no draining. Just
thought maybe it might help you in some way. By the way the antibiotic
was
Augmentin.(not sure of the spelling)
Hope everyone else is well and happy.
Karen(PA)
=========================================================================
Date: Thu, 22 Apr 1999
21:57:52 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: Jordans surgery
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Jenn,
We will keep Jordan and your family in our prayers for his upcoming
surgery.
Hope all goes well. When things settle back down, let us know how he
is doing.
Cristy
=========================================================================
Date: Fri, 23 Apr 1999
17:09:25 +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"
Hi Christy
>They gave us some bandages to put on the area, called DuoDerm.
Great stuff - I used to work for the company that developed and marketed
it. Hope it works for Carlee. And you're right to be concerned
about that raised spot.
All the best
Ann
NZ
=========================================================================
Date: Fri, 23 Apr 1999
17:09:30 +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: Ears'n'Ops'n'Hospitals
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi
This ears business is current (and ongoing!) for us. Checked Tuesday morning - wax with blood - off to the GP - grommet blocked. To the specialist Thursday PM - no longer blocked - told off for using cotton buds (cottonwool on end of pliable stick) - thought light infection present, but also tissue regranulating too quickly can be cause of blood with wax - onto steroidal drops instead of antibacterial to slow down the regranulation.
Amy was also told that she is not to yell at Mum when she puts in the eardrops because Mum is only doing what he tells her to. She is to ring him and complain, not complain at Mum.
Isn't it wonderful when the doctors stand up for us!!
Good luck to all those dealing with these issues plus those going in for surgery. Sorry Jenn, I didn't get your message early enough to send best wishes for Jordan's surgery - I trust it has gone well and you will both be back home soon.
And Dana, Howard and I have a routine of me staying in hospital during the week and him during the weekend so that one of us is always with her. During the time she was in hospital for 6+1/2 weeks we had three nights at home together, but that stopped when another mother told me that Amy cried for over two hours one night and the nurses weren't able to placate her. It is a real drain on my emotional and physical energy, but I believe it is the least I can do for her, and hopefully she will be a more secure person through knowing one of us is always available.
Having said that, we have no other children, and I have the sort of job that I can drop for a term when Amy has surgery. I can fully appreciate this issue is not so straightforward for other families.
Re Augmentin (augmented penicillin) - though this was thought to avoid the problems caused by other antibiotics, it appears to cause more. Amy had a rash on it at one time, but as she had been on a range of different things we just didn't use it again for a couple of years and she has been okay with it since then. However, I don't think it is a particularly effective antibiotic.
Regards
Ann
NZ
=========================================================================
Date: Fri, 23 Apr 1999
01:37:35 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: TENDON TRANSPLANT
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hey everyone...I hope you
are all fine! I have a question. Friday
the 30th Daryl is going to have a tendon transplant. We have
continued to
have trouble with his thumbs growing back together after 2 seperations
each. His bones were all fused at the tips and after surgeries
the thumbs
grew back together with the skin grafts. Believe me... I was
very
aggressive in dressings, but after 2 months of re-injuring his hand
I would
have to let it heal without wraps. The doctors say that it is
like that
with the real severe hands sometimes. After discussing our options
of
something new we agreed that we would try the transplant of the extensior
tendon to the side of the wrist to the midshaft of the thumb.
We are
hopefull that this will allow him to have a wide space between his
thumb
and fingers and have some mobility. Has anyone heard of this?
I am under
the ipression that this is the first time it will ever be done on aperts
hands. Let me know what you think.
Dana, I am looking forward
to meeting you and your mom. Do you
need specific directions once into Lexington? If so, let me know.
I have been praying for Jordan
and all of the others that have been
having surgeries lately. Hope Carlee is doing better. I
am sorry I don't
get to respond more, but I do try to keep up with everyone. I
will be
sending out pictures of Daryl soon. Thanks for the pictures you
have sent
already!
God Bless you all!
Denise Graham
=========================================================================
Date: Fri, 23 Apr 1999
19:13:08 -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: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: We are getting ready to
Celebrate!!!!!!
Comments: To: GSieb91515@aol.com
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi friends,
Tony and I would like to thank everyone for there support with our adoption
of Laura, as yet we haven't had any finale letters, but thats typical
of
our social service system, I suspect we will get a couple of days notice
of
Lauras arrival*smile*
I would also just like to say, Tony and I don't consider ourselves
that
special, its the kids that deserve that praise.
We really think there is a high power at work,, we have been trying
for 4
years to have another baby, but God has other plans! First he sent
us
another wonderful son all be it a foster son, but he has become a major
member of our family, and know his Bio family want us to adopt him,
then
where lent our little treasure Katie, she has taught us soooooo much.
I
totally believe she was sent, to prepare us for Laura, or another child
with special needs (I don't want to get to sure of ourselves until
she's in
our arms). For the list members that have a hard time with this concept,
sorry, I have to admit we to have struggled with God and the whole
religion
thing in our lifes to, But what made me pick up a public phone and
ring the
special needs adoption section, while I was waiting to see one of Katies
doctors one warn Tuesday afternoon!!!!!!!!!!!! Hmmmmmmm And why at
a time
when Laura's SW was the first to answer the call, Something is at work
don't you think.
We are looking forward to become parents again with so much excitement
I
really have a hard time containing my self at times,,, We also know
that we
are entering a life long commitment to Laura, just as you do with any
child. I really don't think we are doing anything that special, We
could
have a Bio child with Apert/special needs etc, and be going in blind,
how
many parents get a Medical report, before the kids are in there arms.
LOL.
Once againg I would like to thank you all for your support, can't wait
to
send those photo's out!!!!!!!!!!
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, post fontan for tricuspid atresia, CDLS,
etc
etc. Awaiting the arrival of Laura, also 16 months, with Apert syndrome
(
the count down has begun to her adoption)
=========================================================================
Date: Fri, 23 Apr 1999
09:15:59 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: Firefli007@AOL.COM
Subject: News and such from Georgia
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi!!
Jenny from Georgia here...
WELCOME to all of the new families... This is a wonderful group and
a great
resource for Apert's people!
I am 32, born with Apert's ... can also relate to loneliness and such...
There is a great book out called "Playing the Tuba at Midnight" by
Roberta
Barnes (I Think)
that has helped me get through those rough stages. It's a quick
read and
packed with humor and great advice about "singlehood" and all the schtuff
that goes along with that.
I am also just as shocked and dismayed with goings on of Colorado.
Why
tragedies like this happen overwhelm me with sadness and concern for
our
country.
God bless alll the little ones and their surgeries. I pray that
Teeter is
feeling better and that Don and Cathy are on the mend as well.
I had a sleep study done (FINALLY!!!!) and am going to be fitted for
a C-PAP
machine today. I have always had problems with snoring, and the
study
revealed a "moderate O2 impairment with chronic obstruction of my airway"
The Dr. thinks that a CPAP thingy will do the trick. Anybody
got any advice
about this? Pro's and cons of CPAP? I was really impressed
by this Doc as
ghe actually knew what Apert's was and I didn't have to go through
the whole
schpeeel over and over again.
God Bless Have a GREAT weeekend everybody.... can't wait for June!!!
Jenny in Georgia
Have a great weekend everyubody.
=========================================================================
Date: Thu, 22 Apr 1999
19:31:36 -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: This and That from Guyettes
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Joanne,
My family is also walking in the March of Dimes Wonderwalk this Sunday
here
in Minnesota. This was something we started even before Jake
was born (he's
17 months now). I HAVE reached $500.00 !!! I'm not sure
of the reaction
I'll get to Jake on Sunday, but I don't care. I'm excited and
I really feel
it's such a great thing to experience with our children. I'm
happy to hear
of others involved in this wonderful event!!
Liz Niemi and Family
-----Original Message-----
From: J. G.
Lindamood [SMTP:chanan8@JUNO.COM]
Sent: Thursday,
April 22, 1999 2:13 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: This and That from Guyettes
Hello out there!
Hey Lisa, I admire your efforts
to have stuff ready for Samantha if
and
when she wants it.
I wish my parents had some stuff. There are
very few
pictures of me as an infant
and almost nothing about what I went
through.
I called my pediatrician
a few years ago and he sent me some
pictures of
my hands before they separated
my thumbs. It's interesting to me
and
gives some degree of identity.
Hello and welcome to the
newcomers. My name is Joanne and I'm 34
with
Aperts. Patty, feel
free to e-mail me whenever. I can relate with
you
about the loneliness and
depression. I hope I can help. By the
way..
I'm in Ohio too! Where
are you?
My mom and I are walking
in the March of Dimes Walk America. We are
competing against each other
to see who raises the most money. My
goal
is $500.00. I had
it at $100.00 but that was almost too easy. I
have a
feeling I'm "cashing in"
on my disability. They see me and hear
"March
of Dimes" and wallet comes
out. With the risk of being presumptuous
and
having someone yell at me
about soliciting.. I am taking any and all
donations I can get. I need
the donation by April 30 please.
Hope all is well!
Joanne
=========================================================================
Date: Fri, 23 Apr 1999
10:43:11 -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: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Shootings
MIME-Version: 1.0
Content-Type: text/plain
I am fairly neutral on the subject of gun ownership. I do not
own any
guns. Yes there are lunatics who own guns and misuse them, but
there
are also thousands of responsible gun owners who should not lose their
privleges because of the acts of others. I look at even larger
acts of
senseless violence that do not involve guns - consider the Oklahoma
City
bombing - no guns used - must we now seek to ban fertilizer and diesel
fuel? The bottom line in my mind is that responsibility lies
with the
parents. The buck stops there.
> -----Original Message-----
> From: Robin MacDonald [SMTP:macdonal@GOLDEN.NET]
> Sent: Thursday, April 22, 1999 8:52 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Shootings
>
> I agree with those who have stated that a lack of religion may be
a
> factor...but how about GUNS! Until Americans realize that the right
to
> bear arms is a MAJOR CONTRIBUTING FACTOR to people getting shot...the
> senseless violence will continue. Each day in the USA hundreds of
> people
> are shot..why..people have guns!
>
> I haven't heard one word from the US media...including the President
> ...that maybe there are too many guns in circulation?
>
> Thank GOD..for Canada's approach to gun control. If you really
care
> for
> your citizens who are dying everyday because of guns....ask your
> politicians to reverse a senseless "we must have a gun" attitude
that
> seems to be so prevelant in the USA!!
>
> You cannot legislate or keep from some nut from doing harm if they
> really want to..but perhaps a tighter control on guns would be a
> start.
>
> If you don't beleive me ...look at the stats between Canada and the
US
> on crime, murder and assaults where a gun was used!
=========================================================================
Date: Fri, 23 Apr 1999
12:35:44 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: Sandra Jones
<AJones7692@AOL.COM>
Subject: Re: Thanks
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Every one ,
Thanks for all the welcome messages, I really nice to read all the messages,
it helps to know that ther are other people out there is the situation.
Is it a regular problem with Aperts to have ear problems? Richard
has been
having ear problems since he was born, he's had grometts twice he now
has to
wear 2 hearing aids .
Its terriable about the shooting in Colorado, i'm glad we have such
a good
gun law over here, its almost impossible for kids to get any
kind of gun. We
had one incedent a few years ago where a man entered a nursery
school and
shot 16 children and their teacher
it shocked the whole country . My thoughts are with all the people
in
Colarado .
Richards Doctor have said they will be doing surgery on his mid face
etc when
he's 11yrs old at what age do they operate where you are?
Best wishes to everyone,
The Jones Family
=========================================================================
Date: Fri, 23 Apr 1999
13:01:58 -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: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: News and such from Georgia
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hi Jenny....
As an owner and user of a CPAP...her's my views on it...
One of the best things about it, in my opinion, it alowed me
to go =
without surgery to have my airway "widened", as the machine itself
is a =
much cheaper alternative.It's pretty easy to get used to.(having it
on =
at night)
A major drawback, however, you must obviously sleep where there
is =
electricity...and if your sinuses get stuffed occasionally, as mine
do, =
it's useless.( It'd be a very good idea to have so fast acting sinus
=
medication on hand) It is soley dependant on breatheing thru your =
nose.If you have to have surgery for anything, your apnia has to be
=
addressed at that time also, as I had hernia surgery a coupleyears
ago, =
they had to put a tube down my throat,(done after I was put to sleep
for =
the surgery, and removed before I woke up) which to me, was no big
deal, =
sounded MUCH worse than it ended up being..I had no problems after
with =
a sore throat, or anything associated..but gotta admit I was scared
to =
death over the thought of having a tube in my throat.
The CPAP has parts that must be replaced occasionally, The mask,
=
harness, hose from the machine to the mask.. can all wear out..It's
not =
cheap to replace them, but not that bad either.The last time I replaced
=
everything, it cost around $120.
Hope I helped you...Have any more questions, feel free to ask,
you may =
also email me privately also if you wish.
Take care...
Mark
----------
From: Firefli007@AOL.COM
Sent: Friday, April 23, 1999 8:15 AM
To: APERT@LISTSERV.AOL.COM
Subject: News and such from
Georgia
Hi!!
Jenny from Georgia here...
WELCOME to all of the new families... This is a wonderful group and
a =
great
resource for Apert's people!
I am 32, born with Apert's ... can also relate to loneliness and such...
There is a great book out called "Playing the Tuba at Midnight" by
=
Roberta
Barnes (I Think)
that has helped me get through those rough stages. It's a quick
read =
and
packed with humor and great advice about "singlehood" and all the =
=========================================================================
Date: Fri, 23 Apr 1999
14:48:05 -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: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Midface and sleep apnea
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi everyone! We've been remodeling 2 bedrooms this week so I've
not been
reading the email too well (had 90 msgs when I checked today!) I hope
all
who are having surgery are doing well. Sara Younkin also had
a sleep study
done last week--we've been saying for months that she's working too
hard at
night to breathe. At 2AM during the study the tech came in to
put her on
O2. He said that she has episodes where her sats are down in
the 70's. Her
doc went over the results with me in the morning. Apparently
she not only
has episodes of obstructive apnea but also something called hypopnea(sp?)
which as I understood it is when she would relax in REM sleep her muscle
tone was not enough at times to breathe effectively. Bottom line
is, she
needs more O2 at night or she's at severe risk for pulmonary hypertension.
None of us thought she'd tolerate the CPAP so for now we're using nasal
prongs to bring her baseline up so when she desats she doesn't go as
far
down. He seems to feel that her best bet is a midface as soon
as her
surgeon can arrange it--which we weren't planning on having to deal
with
until at least next year. So we're off to Children's Hospital
of
Philadelphia on 5/6 to make the arrangements. Hope everyone is
well! Kelly
=========================================================================
Date: Fri, 23 Apr 1999
18:51:29 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: Jenngram@AOL.COM
Subject: Jordans surgery, midfaces and
shootings
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Well, thanks so much for the thoughts and prayers for Jordan. he came
through
like a trooper, got home at a Peanut Butter and Jelly sandwich, played,
ate
some tasty treats from Boston Market (chicken, sweet potatoes, creamed
spinich for iron of course and cornbread) then fell fast to sleep by
6:30........so far on regular tylenol, but the strong stuff is standing
buy
for tonite if he needs it.
Surgey itself was a success, and we FINALLY hae all 10 fingers completly
separated!!!! Hopefully, we'll get to take a breather for a while....at
least
until we get moved to Columbus and can find some new docs!!!
Good Luck to Emily next week on her surgery, and any others my fatigue
brain
can't think of at the moment. Our thoughts are also witha ll of ya'll
dealing
with mid-face surgery decisions.....these choices come around far too
often
As for the shooting, who can even begin to make any sense of it. All
I can
imagine is that these two boys had some real problems; that people
found it
was easier to look the other way as opposed to addressing them. How
a
teenager can build an arsenol of weapons in their own garage and no
one ever
went out there to say hello, and see what their kids were up to amazes
me.
But then nothing should amaze anyone anymore. As triumph as our children
here
prove to turn out to be, a handful of others turn in the wrong direction.
As
my husband said last night, "Kinnda makes you really wonder what "normal"
is
anymore." If thats normal, I'll take my "abnormal", loving, caring,
considerate of others child anyday of the week.
As for gun control, I don't know what the answer is on that one. I don't
have
one, and will not allow one in the house as long as their are children
present. Its a very personal decision, and hopefully all parents choose
based
on the good of their children. I would rather a burgular come in and
shoot
me, then have Jordan get a hold of a gun and accidently shoot himself,
or
someone else. Its a risk I am willing to take. Some are not.
And theres my 2 cents worth, or rather 2 dollars worth
Thanks again for thnking of Jordan today
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 23 Apr 1999
16:00:55 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Christy and Carlee,
Glad to hear everything went well. I got Carlee's pictures in the mail
today. What a cutie. I will try to send you a picture soon.
Kelly Spadini
=========================================================================
Date: Fri, 23 Apr 1999
15:58:53 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: my son ryan
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Susan,
My name is Kelly Spadini. I am 17 years old from California. I have
had
a lot of surgeries just like Ryan has had. Wow fracturing his arms
at
the elbows sounds very painful. I have been through pretty much
everything you can expect a "different" person to go through so if
you
have any questions jus ask. I don't really know what to tell you about
his elbows but I know you will get plenty of advice from other people.
Kelly
=========================================================================
Date: Fri, 23 Apr 1999
16:18:14 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Patty,
My name is Kelly Spadini. I am 17 years old with Aperts Syndrome. I
have
been through just about everything that you'd expect a "different"
person. Fortunately I have been accepted at school and I
have a
wonderful group of friends who I'd be lost without. I get depressed
sometime and ask myself "Why did this have to happen to me?". Most
of
the time, I try not to think that way. I set high goals for myself
and
feel great when I achieve them. My friends never laughat me and I know
I
always have the beside me. I honestly think having Apert Syndrome and
going through all that I have gone through has made me a better person.
I love the listserve, although I lurk more that I write. I am so glad
this is available for new parents. As far as I know, all my parents
got
when I was born was photocopied pages from a book.
I look forward to hearing from you soon.
Kelly
=========================================================================
Date: Fri, 23 Apr 1999
16:24:32 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Jordans surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Jenn,
I'll be thinking about Jordan. Please let us know how everything goes.
Hope all goes well.
Kelly in California
=========================================================================
Date: Fri, 23 Apr 1999
20:48:33 -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: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: We are home early!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Hi Brenda:
Hope the antibiotic is working on Jonathan's ear.
Just wanted to know the dates on the get away to Myrtle Beach. I have
a
friend who is interested and I haven't keep track of it since we are
expecting twins in May, and we won't be doing much traveling. Our daughter
Michelle is 8 and has Aperts, she is very excited about being a big
sister.
Welcome Patty & Susan.
Jordan is in our prayers.
Thanks again.
Martha Bradley
Algonquin, IL
=========================================================================
Date: Fri, 23 Apr 1999
22:27:21 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: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HI PATTY, WHERE IN OHIO DO YOU LIVE? I'M FORMALLY FROM WEST FARMINGTON
IN
NORTHEASTERN OHIO, ABOUT 75 MILES FROM CLEVELAND.
I NOW LIVE IN FLORIDA
AND HAVE FOR ALMOST 40 YRS. MY DAUGHTER-IN-LAW SAID SHE WROTE YOU,
HER NAME
IS CRISTY AND THEY HAVE A DAUGHTER WITH APERTS NAMED CARLEE. CRISTY
IS A GOOD
PERSON TO HAVE FOR A FRIEND. HOPE YOU TO GET ALONG. YOUR NEW FRIEND
MARILYN
=========================================================================
Date: Fri, 23 Apr 1999
22:59:00 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: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
KELLY,
CARLEE AND I WOULD LOVE A PICTURE. CARLEE IS DOING GREAT, AFTER HER
FIRST
CRANIAL SURGERY.
LOVE,
CRISTY AND CARLEE
IN FLORIDA
=========================================================================
Date: Fri, 23 Apr 1999
22:06:57 -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: "A New Baby To Love"
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hello everyone! I was going through and updating some of Jake's
things in
his baby book, and came across this card which was given to us by Jake's
great Aunt right after he was born. It brings tears to my eyes
everytime I
read it. I thought I'd share it with you because I know many
of you can
relate. Hope you enjoy and cherish it as I do!
Liz Niemi & Family
"A New Baby To Love"
"All children need love, understanding, and care, someone they can count
on
to always be there...
But God knew some children would need more than others, and that's why
He
chose special fathers and mothers.
They have unique challenges right from the start, so the Lord holds
these
families close to His heart.
He gives them His strength and the patience to wait...they learn that
small
steps bring rewards that are great...
And they come to know joys that they'd never dreamed of, when their
hearts
have been touched by a special child's love!"
=========================================================================
Date: Fri, 23 Apr 1999
23:17:06 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: JobeCST@AOL.COM
Subject: my computer works now
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hello Shirley Tanner,
My name is Stacey Jobe (Tyler's mother) we met in Dallas the other day.
I
hope Collin and you came threw your apointments just fine!
Tyler's doing
great we have all five finger's on both hands and were just waiting
and
praying they will heal really fast. Those bandages really get
in his way.
He's also getting very moody. You can't sit him on a table, hold
his hands,
or go in to a room with a tile floor with out him throwing a walleyed
fit,
because I sit him on a table to change his bandages, he does
not like to be
restrained and his doc. office has a tile floor. Is he smart or what!
I read a e-mail from somebody asking about a second opinion! Well
Tyler's
hand surgeon that did all three of Tyler's hand surgery's was the second
opinion. Dr. Genecov in Dallas has done the best job. Of
cource all the
credit goes to the Lord because he was bathed in prayer the hole time
he was
cutting on Tyler. Genecov seperated Tyler's Thumb and little
finger first,
then the ring , and on April 8th his middle and pointing fingers
had grew
enough he was able to successfully seperate them. Tyler hand
the rosebud
hands with a solid finger nail across the middle three fingers.
I'm going to
try to get picture's out to everybody.
It depends from person to person on what I tell them about Tyler's
condition. I have more trouble with older adult drilling
me with question.
I know there just nosey or concerned, but when you have had a long
day of
appointments and your tired of chasing your son it's hard to be nice.
But, I
do answer there questions honestly and just tell them that the lord
has great
things planned for my wonderful little boy. He's already changing
my hard
headed daddy. Well i think i've typed to much already, good night
Stacey Jobe (Tyler's mom) 18 months
Cisco, TX
=========================================================================
Date: Fri, 23 Apr 1999
23:20:14 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: JobeCST@AOL.COM
Subject: Re: "A New Baby To Love"
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Thank you for sharing this. I see that love everytime Tyler looks at
me
=========================================================================
Date: Sat, 24 Apr 1999
01:02:08 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: AOL User <Munch35738@AOL.COM>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Jeany, my name is Mary and I do not have Apert per se. I have
a cleft
palate. I live in Florida and have one sister. She is normal
and she live
in Florida. I had multiple surgeries to correct my cleft.
I also had one
surgery to reconstruct my face. Hope to hear from you and you
can e-mail me
privately if you want. Mary
=========================================================================
Date: Sat, 24 Apr 1999
17:40:08 +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: Shootings
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I hear you Don, but you've got to admit that if there were no guns then this sort of things wouldn't happen - not with guns anyway, they would probably create something else.
>The bottom line in my mind is that responsibility lies with the
>parents. The buck stops there.
In NZ not long ago it did. The father didn't secure his gun cabinet and he and a number of others were killed by his son. The Mental Health services are again under review, but it is not an area that gets a lot of funding.
The Tasmania situation wasn't "just" a regular kid gone crazy either, there has got to be something else going on to make the gunman (isn't it interesting how it isn't ever "gunwoman") go on his rampage. A loved child from a secure background without glitches in his/her genetic mental makeup isn't likely to do this sort of horrific action.
Another ghastly tragedy and I have had to avoid the TV news all week. That AND Kosovo is just too much for me to handle.
Regards
Ann
NZ
=========================================================================
Date: Sat, 24 Apr 1999
08:07:18 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: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: my computer works now
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Stacey,
So glad you remembered our names & that
we are on the listserv. It was
so nice meeting & talking with you guys at the hospital!
After setting off I
told Larry I wished I had gotten your names/address, etc. My
memory is
really bad!
Happy to hear Tyler has 10 digits now!!
He is such a cutie! I remember
how bad Collin was with taking his bandages off. We were constantly
putting
them back on & trying to figure out how to put them on so he couldn't
get
them off. I think we finally put adult size "tube socks" over
the bandages
that went all the way up his arms & legs (we had toes done at the
same time)
& then safety pinned the top to his shirt sleeve to keep them from
coming
off. It helped & kept the bandages cleaner too. Just had to watch
for
sweating underneath. We didn't have any problems there though.
Collin was
still a Hudini sometimes! You will get very good at "dressings".
:)
Our appointments were hectic to say the least.
The orthodontist was the
worst! The CAT scan went fine after they gave him the "goofy juice".
He
didn't care what they did! All the others were pretty uneventful.
Out trip
back was another 14 hours ride and VERY long. We were all happy
to be back
in our own beds that night. Next time we are going to go a day
or two early
for our bodies & minds to rest before doctor appts. begin.
We will probably
be travelling back down about May 28th. Surgery is on June 2nd for
his
mid-face/RED placement. Trying not to worry about it right now
though.
Have you placed your address on the "address
page"? I am still working
on sending out pictures to everyone. Have been very busy since our
return. My
husbands sister, husband & 3 kids came to visit (are still here)
and my
Mother in law, other sister & brother-in-law, their daughter &
4 children
came Thursday for the day. I promise to get those pictures of
my cutie out
soon!!
I am showing off the pictures of Seth, Emily
and Carlee that I have rcvd
so far! Thanks - they are all beautiful kids! Looking forward
to getting
more.
Gotta go for now.
Take care all,
Shirley
=========================================================================
Date: Sat, 24 Apr 1999
11:26:49 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Dana White <Danabrger@AOL.COM>
Subject: Coming to Lexington
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Denise,
Where will Daryl's surgery be performed? I am not that familiar
with
Lexington but I am sure someone around here can give me directions.
We will
be coming from 64East. Mom and I are looking forward to meeting
you as well.
Will keep Daryl in our prayers for a smooth surgery and speedy
recovery!
As far as tubes in the ears.
I believe I had 4-5 sets of tubes. Those things seemed to fall
out so
easily. (They looked like a microscopic spool for thread).
After my last
set (age 9), the doctors decided I had quite a bit of scar tissue (from
the
multiple surgeries to place the tubes) and would not put any more in.
I do
have hearing loss, supposedly secondary to the scar tissue, but not
severe
enough to need hearing aids. I haven't had my hearing checked
in about ten
years.
Sincerely,
Dana
Louisville, KY
Danabrger@aol.com
=========================================================================
Date: Sat, 24 Apr 1999
17:48:44 -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: Judy Amerman
<jamerman@UTI.COM>
Subject: Hannah Brown
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_001D_01BE8E7A.B2EA33C0"
This is a multi-part message in MIME format.
------=_NextPart_000_001D_01BE8E7A.B2EA33C0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi,
I spoke to Martha Bradley's friend today about the beach trip and she
is =
going to try to join us.
Her name is Lauri Brown, and her daughter is Hannah, nine years old
with =
aperts plus trach.
She hopes to have her husband convinced very soon about getting online.
In the meantime she would like to be on the picture exchange,
I have =
added her and Don should have her added soon.
I will add her here as well.
Lauri Brown
912 Ski Hill Rd.
Fox River Grove, Il. 60021
Daughter Hannah age 9 with aperts.
She is really excited about what Don has created. She really wants
to =
be a part of our "elite" club.
She has also been to several Faces events so maybe she will also have
=
alot to share with us!!
I have to take Nick to the orthodonist on May 7 and she and Hannah are
=
planning on joining us for lunch after Nick's appt.
Laurie Bailey, are you still with us??????? Didn' you meet
her at one =
time??
Things are good here. Nick is excited. His Dad is coming home
next Sat =
for five days and will be here Nick's Ninth birthday on May 3. He will
=
really be excited when his dad comes home for a month in June!!!
Me too.
I am tired of being alone so much!!
guess I had better run, have to fax Lauri a copy of the picture exchange
=
list. Which reminds me.
I plan to take some pics then Bill gets home. I will set
the self =
timer on the camera and try to get a decent family pic to send out.
Judy
jamerman@uti.com
------=_NextPart_000_001D_01BE8E7A.B2EA33C0
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=3D"text/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>Hi,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I spoke to Martha Bradley's
friend =
today about the=20
beach trip and she is going to try to join us.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Her name is Lauri Brown, and
her =
daughter is=20
Hannah, nine years old with aperts plus trach.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>She hopes to have her husband
convinced =
very soon=20
about getting online.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>In the meantime she would like
to be on =
the picture=20
exchange, I have added her and Don should have her added=20
soon.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I will add her here
as =
well.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Lauri Brown</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>912 Ski Hill Rd.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Fox River Grove, Il. 60021</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Daughter Hannah age 9 with =
aperts.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>She is really excited about
what Don =
has=20
created. She really wants to be a part of our "elite" =20
club.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>She has also been to several
Faces =
events so maybe=20
she will also have alot to share with us!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I have to take Nick to the orthodonist
=
on May 7 and=20
she and Hannah are planning on joining us for lunch after Nick's=20
appt.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Laurie Bailey, are you still
with=20
us??????? Didn' you meet her at one time??</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Things are good here. Nick is
=
excited. His=20
Dad is coming home next Sat for five days and will be here Nick's Ninth
=
birthday=20
on May 3. He will really be excited when his dad comes home for a month
=
in=20
June!!!</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Me too.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>I am tired of being alone so
=
much!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>guess I had better run, have
to fax =
Lauri a copy of=20
the picture exchange list. Which reminds me.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>I plan to take some pics
then =
Bill gets=20
home. I will set the self timer on the camera and try to
get a =
decent=20
family pic to send out.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_001D_01BE8E7A.B2EA33C0--
=========================================================================
Date: Sat, 24 Apr 1999
20:52:08 -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: The Stroupes
<stroupes@MINDSPRING.COM>
Subject: Re: TENDON TRANSPLANT
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Denise,
Zach's hand doc has mentioned this to us. Zach has a thumb and
3 "digits"
on each hand and some work better and different than others.
He is quite
good at doing the vulcan peace sign. His doc has mentioned doing this
in the
future the same as you mentioned. I did not ask alot of questions because
had digit seperation on his left hand 2 wks ago so I wasn't real interested
in hearing about more surgery so soon after this one. It sounded
quite
simple and not a big surgery in the scheme of things. After
Daryl had his
thumbs released, did they put splints on to keep the thumbs away from
the
hand? Zach got them almost immediately and wore them daily for
a week and
then every night for several months. Let me Know.
Judy Stroupe
-----Original Message-----
From: Chad & Denise Graham <cgraham@INFOAVE.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, April 23, 1999 3:17 AM
Subject: TENDON TRANSPLANT
> Hey everyone...I hope you
are all fine! I have a question. Friday
>the 30th Daryl is going to have a tendon transplant. We have
continued to
>have trouble with his thumbs growing back together after 2 seperations
>each. His bones were all fused at the tips and after surgeries
the thumbs
>grew back together with the skin grafts. Believe me... I was
very
>aggressive in dressings, but after 2 months of re-injuring his hand
I would
>have to let it heal without wraps. The doctors say that it is
like that
>with the real severe hands sometimes. After discussing our options
of
>something new we agreed that we would try the transplant of the extensior
>tendon to the side of the wrist to the midshaft of the thumb.
We are
>hopefull that this will allow him to have a wide space between his
thumb
>and fingers and have some mobility. Has anyone heard of this?
I am under
>the ipression that this is the first time it will ever be done on
aperts
>hands. Let me know what you think.
>
> Dana, I am looking forward
to meeting you and your mom. Do you
>need specific directions once into Lexington? If so, let me
know.
>
> I have been praying for
Jordan and all of the others that have been
>having surgeries lately. Hope Carlee is doing better.
I am sorry I don't
>get to respond more, but I do try to keep up with everyone.
I will be
>sending out pictures of Daryl soon. Thanks for the pictures
you have sent
>already!
>God Bless you all!
>
>
>
Denise Graham
=========================================================================
Date: Sun, 25 Apr 1999
01:11:33 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Compuer Questions
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Everyone,
Does anyone know about the following:
When I look at the kids pictures off of Teeter's page I only get
one photo
of each. The rest are boxes with another little box on the corner.
I try to
click the little boxes but I get nothing. Also on Teeter's page
I get a
picture here and there and then a bunch of those little boxes.
(Hope this
makes sense).
Also I've only been able to register to the chat room, but can never
find how
to get on. I click on Chat now, but nothing seems to happen
Is everyone
else able to get to the chat room? Does anyone still do
the Sunday AOL?
Thanks for your help in advance,
Love, Lisa (Samantha 5 1/2 mo mom)
=========================================================================
Date: Sun, 25 Apr 1999
09:01:13 -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: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: RED System Results
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi all...Just wanted to let everyone know that Talitha underwent a LeForte
III with the RED System on Monday, April 19th, in Dallas. We
got discharged
from the hospital on FRIDAY!! Her recovery was excellent!!!
I can't begin
to describe the change in her appearance! She's happy, we're
happy...I
can't express enough the success we've seen with this device!
It's
absolutely fantastic!! We were the 13th patient of Dr. Fearon
to undergo
this procedure. We're so pleased, and recommend this to anyone
who is
eligible to undergo the procedure. Folks, THIS IS FANTASTIC!!
I'm in the process of putting together a website concerning this.
We'll
have pics, etc. during different phases of growth. We'll keep
you
informed!!
Michael Sharrow (Talitha's dad)
http://www.crouzon.org
=========================================================================
Date: Sun, 25 Apr 1999
10:29:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Seth's Mom
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Friends,
It has taken me a week to regroup since we returned from Miami.
I just
realized that Seth has had five surgeries since September. No
wonder we
are feeling fried. Hopefully, he won't have any for a while now.
I
don't believe that he could emotionally cope with another (I know that
I
can't, I am just barely hanging on by a thread).
Thank you all for your well wishes. We really enjoyed spending
time
with the Miller's again. Nicole's fingers look great!!!
She's a an
endearing child. When she smiles, her whole face smiles.
I am going to be late sending pictures this time. I have finals
coming
up and papers due, plus our only daughter is getting married in May
and
I haven't really taken care of business. I think we invited more
people
than the reception hall can legally hold. Oh, my, what shall
I do? I'll
think about it tomorrow, today I have paper that must be finished.
My love to all of you. I know and understand what you are going
through. My prayers go to all that have just had surgery and
those that
are facing it and especially those that are having to make difficult
decisions concerning their child's treatment.
Peace, Dori
=========================================================================
Date: Sun, 25 Apr 1999
11:29:20 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: BBarn60368@AOL.COM
Subject: Re: my computer works now
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Stacy:
God does have wonderful things planned for your little boy. I
was so glad to
read your reference to Him. I don't know how some of us make
it through
without His strength in our lives.
Believe it or not, there is a reprieve from surgeries after separating
the
fingers and taking care of the fused sutures in the skull. Shirley
( 5 yrs.
old with Apert's) had 8 surgeries during the first 2 years of her life
and
hasn't had another one since then. I don't mean to say that this
is always
the way it goes, but at least it doesn't seem that the surgeries come
so
close together after those two areas are taken care of.
Much love and may God continue to bless you:
Alice in Orlando, Florida
=========================================================================
Date: Sun, 25 Apr 1999
13:49:41 -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: Discussing things with our kids...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi everyone~
I just wanted to share something and see if anyone else kind of had
anything similiar happen.
Courtney an I were having lunch one day, a girls day, of shopping and
everything. We were talking as usuall and I told her I was going to
have
to call Children's Hospital to make some appointments for her. She
said
No that she was fine, she wasn't sick. I said I know but what she needs
to go see them anyway just like always. Then I said, what if they want
to do surgery to fix her fingers,( a few are bent the wrong way) she
said No they are just fine, see then she moved them. I said I know
but
they might want to make them straight, well she wasn't to sure about
that. Then I said well what if they want to do something to, and I
was
trying to think of a way to put it when I touched my head, she said
My
Head? I said yes, she sai NO!! I giggled I
said What? she said That
would hurt! I told her Mommy would not let them hurt her, but
she kept
saying No....... as in I don't think so!! it was kind of
cute, but
then I was thinking how grown up she is, because we have never had
to
talk about this before, and she has Never been affraid to go to the
doctors before, But she has had nothing done for gees I think going
on 3
years now, all she ever does is go to the family doctors if she gets
sick.
what I was a little concerned about is how things might go if and when
we do go to the Hospital this time and they want to do something. How
am
I going to help her through this with out her feeling as if I am being
the mean mom... I guess all I can do is wait and
see.
But if anyone else kind of went through the same thing I would like
to
hear how you handled it :)
thanks, Dawn
=========================================================================
Date: Sun, 25 Apr 1999
17:45:25 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: Copperhd87@AOL.COM
Subject: Re: SHOOTING and God
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Well, here's my two cents if anyone is listening.
For all the new people, my son, Mitchell is two and was born with
craniosynostosis, not Aperts. I really appreciate being allowed
to be on
this listserver. Although I mostly lurk, it has been such a comfort
to our
family. I also have an 11 year old son and a 14 year old daughter.
This is my opinion. The problem is not God in the schools.
The problem is
God in the home and God on Sunday morning. So very, very many
of my
children's friends do not attend church regularly or have religious
education
in their home. The girl down the street couldn't figure out a
toy of
Mitchell's. My son explained that it was a model of Noah's Ark.
"Who's
Noah?" she asked. WHO'S NOAH???? I still can't believe
it. She comes from
a very nice family who has a perfect lawn, nice cars and everything
else we
expect in middle class America. Is it the schools that have failed
her? NO!
It's her parents.
My children get so much from their contacts at church. They have
many, many
adults that take a personal interest in their lives and really act
as role
models and mentors. Of course they get the religious education
and have
gained a faith and all the "perks" that go along with it. If
these troubled
children were in church on a more regular basis, I think we would see
a lot
less trouble.
Now for my second point. We have a program in our schools called
"Love and
Logic." The school district administrators have presented it
to us as the
latest thing since sliced bread. In my opinion it is wrong, wrong,
wrong.
It has taken the assertive discipline techniques that were popular
when my
older children were babies and distorted them to the point that they
are
absolutely ludicrous. One of the main points is "natural consequences."
Now
this is fine to a point. However, when the natural consequences
are allowed
to go on until a kid lands in jail or worse, it has gone too far.
A parent
has a responsibility to step in and be a parent. You are not
your child's
friend. You are his parent and you must accept the responsiblity
that goes
along with it. A parent must be involved in his child's life
and spend both
quantity and quality time with him. You have the right to expect
certain
behaviors and the responsibility to enforce the rules to acheive those
behaviors.
Another bogus theory is "Don't make rules you can't enforce."
The example
given by my daughter's middle school was "You are not allowed to smoke
pot in
my home," meaning that you could enforce that rule, but you couldn't
enforce
the "You are not allowed to smoke pot anywhere" rule. Can you
believe that?
This was actually published in a newsletter by by daughter's school.
This
advice once again lets parents off the hook.
I think many parents have fallen for this lame advice because it makes
parenting so easy. You just let your kid screw up--he'll learn.
I can't
know what my kid is doing all the time (making bombs, shooting up a
school)
so I won't try to prevent him from getting in trouble.
Really taking responsibility for your children and teaching them is
very time
consuming and difficult. I would have so much more free time,
if only my
kids would just take care of themselves. But they don't--they're
kids.
A whole other subject is the example set by parent's behavior, but I'll
let
you off the hook on hearing my soap box on that one today.
Just my two cents,
Resa
=========================================================================
Date: Sun, 25 Apr 1999
18:17:10 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: Copperhd87@AOL.COM
Subject: Re: Shooting and violence on
television
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Just in case you didn't get your money's worth from my last post, here
is my
two cents on TV violence.
A little over four years ago, the Murrah Federal Building and 168 lives
were
destroyed in downtown Oklahoma City by a bomb. As a lifelong
resident of the
Oklahoma City area and someone that drove by that building on a regular
basis, I was absolutley devastated. Although I knew no one in
the building,
it is impossible to describe how this changed the lives of everyone
in the
area. Many of my friends were in the downtown area and did have
minor wounds
from falling down stairs, being bounced out of chairs, etc. Many
other
wounds were not visible.
The Friday after the bomb, my husband and I attended a church service
where
the ministers working at the recovery site spoke to the public.
Our
minister, Dr. Robert Allen, was in charge of all ministers at the site.
He
appeared on national television several times.
Another one of the speakers was Dr. Solomon, then bishop of the United
Methodist churches in the state of OKlahoma. He said that someone
had to
stand up to the violence on television and just turn it off.
He then
challenged the congregation to be the ones to do it. My husband
and I took
him up on this challenge. We immediately banned Power Rangers,
Teenage
Mutant Turtles, etc. for our son. We banned ourselves from R
rated movies.
We have never watched NYPD Blues.
Our son wasn't happy at the time, but now I can say he really doesn't
mind
missing Batman and other cartoon violence. He knows it's just
a family rule.
Instead, he learns from Histeria and Wishbone. And I am
really proud not to
be participating in the culture of violence. I feel that our
home was
"cleansed" and keeping it clean is important.
I challenge each one of you to ban TV violence from your home.
You'll never
be sorry.
BTW, Mitchell's middle name is Allen, after Dr. Robert Allen.
OK, I'll be quiet.
Resa
=========================================================================
Date: Sun, 25 Apr 1999
18:56:30 -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: Computer Question
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Lisa,
I too am having problems getting into the chat room I have been able
to
chat only twice. Last week I tried and tried and all I got was
opening
Applet whatever that means, but nothing happens. Don if you are
reading
this before tonights chat maybe you can assist in some way. I
will try
again tonight though. As far as Teeters page goes I'm not having
a
problem..
Raquel Miller....
=========================================================================
Date: Sun, 25 Apr 1999
19:10:44 -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: Discussing things with our
kids...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dawn,
We still have a while yet to get to the stage you are in. However
everything we as Apert parents do for our children is to help them
in the
future and to improve their quality of life. I know it will be
hard and no
matter what, you are and will always be her loving mom. Just
think of it
this way, when it's time to go to the doctor's and get their shots,
you take
them there, they scream and fuss and might even give you a dirty look,
but
driving home it's mommy this mommy that. All is forgiven....My
thoughts on
all that we and our children will have to go through is that at the
end it
will all be worth it and they will thank us for it. Of course don't
get me
wrong we are not doing for the thanks, but I guarantee you that if
we don't
the outcome won't be the same.
Best wishes,
Raquel Miller
Apert Mail wrote:
> Hi everyone~
> I just wanted to share something and see if anyone else kind of had
> anything similiar happen.
> Courtney an I were having lunch one day, a girls day, of shopping
and
> everything. We were talking as usuall and I told her I was going
to have
> to call Children's Hospital to make some appointments for her. She
said
> No that she was fine, she wasn't sick. I said I know but what she
needs
> to go see them anyway just like always. Then I said, what if they
want
> to do surgery to fix her fingers,( a few are bent the wrong way)
she
> said No they are just fine, see then she moved them. I said I know
but
> they might want to make them straight, well she wasn't to sure about
> that. Then I said well what if they want to do something to, and
I was
> trying to think of a way to put it when I touched my head, she said
My
> Head? I said yes, she sai NO!! I giggled
I said What? she said That
> would hurt! I told her Mommy would not let them hurt her, but
she kept
> saying No....... as in I don't think so!! it was kind
of cute, but
> then I was thinking how grown up she is, because we have never had
to
> talk about this before, and she has Never been affraid to go to the
> doctors before, But she has had nothing done for gees I think going
on 3
> years now, all she ever does is go to the family doctors if she gets
> sick.
> what I was a little concerned about is how things might go if and
when
> we do go to the Hospital this time and they want to do something.
How am
> I going to help her through this with out her feeling as if I am
being
> the mean mom... I guess all I can do is wait and
see.
> But if anyone else kind of went through the same thing I would like
to
> hear how you handled it :)
> thanks, Dawn
=========================================================================
Date: Sun, 25 Apr 1999
18:12:30 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Carol <tcgraves@BELLSOUTH.NET>
Subject: Grains of Sand
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0010_01BE8F47.2EB7CCC0"
This is a multi-part message in MIME format.
------=_NextPart_000_0010_01BE8F47.2EB7CCC0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
> Grains of Sand:
Parents Certainly Are Misunderstood
>
>You thought you were happily smiling at your child from a hard stadium
>seat or a hot packed auditorium, but your child looked at your face
and
>saw approval of him and joy in what he was doing.
>
>You thought that you were just patting him on the back or on the head,
>or just ruffling his hair, but your child cherished the warm loving
=
touch
>and his heart was brightened.
>
>You thought you were reading a bedtime story with all the funny and
>scary voices, but your child enjoyed the fact you read every word
even
>though he had heard them a hundred times before.
>
>You thought you were letting your child help paint the house even
=
though
>the paint got kind of runny and drippy in places, but your child knew
>that you were working together as a family and felt a sense of
>accomplishment as a family.
>
>You thought you were singing silly songs or counting cows on a long
>boring trip, but your child learned that it was fun being together
no
>matter where you were.
>
>You thought you were spending a few minutes of your time by throwing
a
>ball in the back yard or baking some cookies, but your child, who
>realized that your time is precious, knew you were investing in him.
>
>You thought you asked your child's opinion about something that
>wasn't too important, but your child thought you asked because
>his opinions and thoughts were important.
>
>You thought you were being a good host by inviting your child's friends
>in for a cool snack on a warm summer day, but your child knew that
his
>friends were important to you and always welcome in your home.
>
>You thought the tears in your eyes went unnoticed when your child
>accomplished an important goal in his life, but your child knew that
he
>was deeply imbedded in you heart and you sensed his accomplishment.
>
>You thought that the refrigerator was as good of a place as any for
>hanging all the art work and "well done" papers that came home from
>school, but your child felt important when he came home from school
=
each
>day with something to show you and tack up in his personal hall of
=
fame.
>
>You thought you gave your child some simple chore or job to do and
told
>him, "Well done," with a smile when he did it, but your child learned
>responsibility and began to realize he could tackle even tougher =
things.
>
>You thought you were helping a troubled restless child get some sleep
=
by
>fixing a cup of hot cocoa, but your child felt you were opening
>you heart ar