Rahiza,
My plastic surgeon said that to get the best function of the fingers
is to do
it as early as possible. I personally agree. Waiting too
long would only
hinder the child from learning to use their fingers. My son's
hand surgeries
were done when he was 5 months and 11 months. Our plastic surgeon
also
believes that all hand surgeries should be done before the child enters
school
years. This way they can learn as they are suppose to.
My personal opinion is
that your doctor is completely wrong.
I would suggest a second opinion.
Lynn Thornquist
Andrew's mom
=========================================================================
Date: Sat, 1 May 1999
08:34:42 -0500
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From: Carol <tcgraves@BELLSOUTH.NET>
Subject: Re: Hands & fingers question
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Our surgeon said the earlier the better.. Nicholas had his surgeries
at 7
months and 14 months (both were scheduled earlier but postponed due
to
illness). He is now scheduled to have an additional hand surgery,
but only
to correct the ring finger than has begun overlaping the middle finger.
Carol Graves
-
=========================================================================
Date: Sat, 1 May 1999
10:39:07 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Baby Update
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Congratulations to Michelle Bradley for being a big sister to twins!
Congrats to Mom
and Dad as well !
=========================================================================
Date: Sat, 1 May 1999
10:49:25 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Lynn Thornquist
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Hi Lynn,
Thinking of you the other day. You should be having that baby
soon, right?
Take care of yourself.
Gail (and Rachel)
=========================================================================
Date: Sat, 1 May 1999
13:14:16 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Shootings
In-Reply-To: <199905010040.UAA13267@buffnet4.buffnet.net>
MIME-Version: 1.0
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> If it's just a matter of spirituality, how do we explain a priest
that
> molests young boys, or the crusades??? These people were not
lacking in
> religion. People do all kinds of strange things and sometimes
it has
>
I don't know how you can say that child molesters
are NOT.
Clearly they do not follow the precepts of whatever religion they
profess -- and contrary to media images, there really are not more
child molesters in religious institutions.
As for the crusades, those were hundreds of years
ago, and the
world was a vastly different place.
Judy
=========================================================================
Date: Sat, 1 May 1999
14:54:46 -0400
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: hands
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Rahiza,
Our hand surgeon here in
Ohio likes to wait a little while to =
start separating fingers, to let the hands grow some. Alex, who is
9 =
years old now, had his pinkies separated at 1 1/2 years and his index
=
fingers at 2 1/2 years. Just last week he had the ring and middle =
fingers on his left hand done, at Alex's request. All of the results
so =
far have been wonderful. Alex's hands work very well and they also
look =
good. I believe that waiting until Alex's hands were a little bit bigger
=
really helped. There are differing opinion on timing, as you already
=
know, but you have to go with your gut feeling regarding what is the
=
right way for your own child. The only crucial thing to think about
is =
that in terms of straightening the thumbs, they should wait until the
=
child is at least 8 years old, or else the growth plates in the bone
can =
be damaged and the digit will not grow as it should. Good luck in your
=
decisions. With so many variations of opinion between doctors and us
=
parents I know that is hard. Take care and remember that there are
very =
few things in this life that have only 1 right way. Amy Irvin
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<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>Rahiza,</FONT></DIV>
<DIV><FONT color=3D#000000 =
size=3D2>
Our=20
hand surgeon here in Ohio likes to wait a little while to start =
separating=20
fingers, to let the hands grow some. Alex, who is 9 years old now,
had =
his=20
pinkies separated at 1 1/2 years and his index fingers at 2 1/2 years.
=
Just last=20
week he had the ring and middle fingers on his left hand done, at Alex's
=
request. All of the results so far have been wonderful. Alex's hands
=
work very=20
well and they also look good. I believe that waiting until Alex's hands
=
were a=20
little bit bigger really helped. There are differing opinion on timing,
=
as you=20
already know, but you have to go with your gut feeling regarding what
is =
the=20
right way for your own child. The only crucial thing to think about
is =
that in=20
terms of straightening the thumbs, they should wait until the child
is =
at least=20
8 years old, or else the growth plates in the bone can be damaged and
=
the digit=20
will not grow as it should. Good luck in your decisions. With so many
=
variations=20
of opinion between doctors and us parents I know that is hard. Take
care =
and=20
remember that there are very few things in this life that have only
1 =
right way.=20
Amy Irvin</FONT></DIV></BODY></HTML>
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Date: Sat, 1 May 1999
15:22:52 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Baby Update
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CONGRATULATION ON THE NEW TWINS BEST TO MOM AND DAD AND BIG SISTER.
LOVE
MARILYN
=========================================================================
Date: Sat, 1 May 1999
18:29:04 EDT
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From: ETolson643@AOL.COM
Subject: Re: teen-age doings
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Hello to all
I have been lurking and haven't written in a while. Thought I
would update
you on Tim's latest adventures. He had a great time skiing and
actually
skiied down the mountain without any assistance. He really loves
skiing and
we are hoping we can go as family next winter.
Also...Tim just got his learner's permit! Yikes! He is so
excited and we
are working with him...slowly but surely. This is a big step
for him.
And finally, he is in a performance at his school. He has a part
in Joseph
and the Amazing Technicolor Dreamcoat. The theater group at his
school is
very active; assisted by a group from Boston University. We are
looking
forward to the upcoming show.
That's all for now.
Thought you might enjoy hearing some things you can all look forward to.
Beth Tolson
Boston
=========================================================================
Date: Sun, 2 May 1999
11:12:05 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Beyond Mad!!!!!!
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Nicki this is Discrimination with a huuge "D", no matter what "reason"
they are giving -
...your husband's weight - discrimination on physical appearance (and
what message is THAT giving you for the future of your Special children)
...your husband - discrimination on gender because they aren't checking
YOU out
...your foster child - discrimination on her actual existence - and
tell THAT one to the parents of more than one child with disabilities (do
they ask them to give away one of their children so they can cope better
with the other?)
...your 3+1/2 yr old - discrimination on age - and tell THAT one to
the parents of multiple birth children!
...I'm sure there is something else there but it slips my mind at the
moment.
It sounds to me as if they really haven't got their act together and looked at the issue as a whole. Let's hope someone sits down long enough to work this one through with you.
Sometimes MPs can be helpful. Hope yours is.
Kia kaha (be strong)
Hugs
Ann
NZ
=========================================================================
Date: Sun, 2 May 1999
11:12:07 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Opinions & Views on Life
(was Shootings)
Mime-Version: 1.0
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> I was going to stay out of this
I was too Judy, but I just CAN'T help giving my opinion on some things!!!
I've read all the responses and acknowledge the heartache and pain this brings to people, whether they are in the same town, or in another country. I don't think any caring person could hear of this tragedy (and those that have occurred before) without being deeply touched.
I also acknowledge the thoughts and beliefs of those Christian members of our Listserver - my Dad was a Methodist Minister and Missionary, so I have grown up with those belief structures. However, I also know a lot of people who have no belief in Jesus as anything other than a teacher, and they have no belief in God, and they do not go to church - and they are wonderful, caring, loving people who wish no harm to anyone.
God is the answer for some and I believe it is important that children have the opportunity to learn about Him (and the love and dedication of his Mother), and share in the community of the church and the extension of family it can provide - but He is not the answer that everyone has chosen. People CAN live a loving, caring, supporting and fulfilling family and community life without Him. I know it is a difficult concept for those who hold to the belief, but some of the strongest, safest and most secure families I know actually have no belief in a god of any sort.
I wasn't going to add to this issue, but nobody else has stood up for the non-believers!!
Ngaku Kia Koe (from me to you)
Ann
NZ
PS I have just read Pat's email - so I am not alone after all.
Thank you Pat.
=========================================================================
Date: Sun, 2 May 1999
11:12:09 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Baby Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
WONDERFUL NEWS!!!
A big welcome to Ana Elizabeth and Christie Allison.
Well done Mum.
Congratulations to all the family.
Hugs
Ann
NZ
>Michelle Bradley wanted to let everyone know that she is a big sister.
She
>is so excited!
>
>Ana Elizabeth(5lb 7oz) and Christie Allison(5lb 2oz) were born
on April
>29th.
>
>Mom and babies are doing fine.
>
>Have a great weekend!
>
>Ryan Bradley
>
>
=========================================================================
Date: Sun, 2 May 1999
11:12:11 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: hands
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>The only crucial thing to think about is that in terms of straightening the thumbs, they should wait until the child is at least 8 years old, or else the growth plates in the bone can be damaged and the digit will not grow as it should.
The timings with some of these emails is amazing!! Amy, I had just sent a message asking about growth plates (I have now deleted it) and now you mention them. Do you know what actually happens?
With all the work done on our Amy's hands I am wondering if disturbance of growth plates could be one of the reasons her hands are so small. But we couldn't have left her with rosebuds (no separation) all these years.
Oh well, noone said life was going to be easy did they!
Cheers
Ann
NZ
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Date: Sun, 2 May 1999
11:15:39 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: teen-age doings
Mime-Version: 1.0
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Well done Tim. Isn't this such an exciting time of life - for you AND your parents!!
Cheers
Ann
NZ
>I have been lurking and haven't written in a while. Thought I
would update
>you on Tim's latest adventures.
=========================================================================
Date: Sat, 1 May 1999
20:31:17 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Hands & fingers question
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Whenever Carlee had her forehead advancement, her Neurosurgeon was there
assisting the plastic surgeon. She just had this done on April 12,
1999. She
was 10 mos. old. They said the neurosurgeon is there to make
sure the brain
doesn't get disturbed and also my husband even asked after Carlee's
surgery
what each one does during the surgery. They said that the neurosurgeon
actually does the cutting and the plastic surgeon puts things back
together.
I know that sounds kind of harsh, but that is the way we were told.
I hope
this helps you.
Cristy and Carlee
in Florida
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Date: Sat, 1 May 1999
20:37:24 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Beyond Mad!!!!!! delete
if you sick of hearing about the
Adoption
drama!!!!!
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Nicki,
I think the fact that you are a foster mom says good things about you.
I hope
all goes well and you get Laura. Just don't give up. That's what it
sounds
like they want you to do. Keep us informed. That is sad that
little Laura
has to wait so long for a wonderful family like yours!
Cristy and Carlee (10 mos. w/ aperts)
in Florida
=========================================================================
Date: Sat, 1 May 1999
20:46:38 EDT
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From: Cristy Williams
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Subject: Re: Baby Update
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Congratulations Michelle Bradley on your new baby twins siblings.
Cristy and Carlee
in Florida
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Date: Sat, 1 May 1999
20:50:45 EDT
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From: Cristy Williams
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Subject: Re: Pictures of Lisa Picht
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Deb,
I can't wait to get Lisa picture. It is so encouraging to hear
you talk
about how well her surgery's have helped. We also would like
pictures of the
adults as well. A few I can think of are Joann and Maxine. Take
care and
keep in touch.
Cristy and Carlee
in cool Florida
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Date: Sat, 1 May 1999
23:01:56 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Shootings
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The excuse of being picked on is a lame excuse. I have been teased
all of my
school year time and never thought of killing people. There is
more to this
problem and parents can't be blamed either. These children have
to learn
this from other places and hatred spread fast through the schools.
I can
remember that the only thing I had to fear was drugs and maybe a fist
fights.
Mary
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Date: Sun, 2 May 1999
00:23:16 EDT
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Congrats on the baby. Mary
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Date: Sun, 2 May 1999
22:27:22 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: We are fighting back!!!!!!!!!!
Comments: To: "D. Bas Denbraver" <Denbraver@worldnet.att.net>,
fostercare list
letters <fphp@egroups.com>
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I know by now you guys are really getting sick of hearing all about
this
issue, but I though I would just let you all know that we are NOT GIVING
UP, many of you have written to us and ask us to keep fighting,
we want
Laura, and if we can't get her then we want another child.
My mum has rung me 3 times to see if I started the letter(to the minister),
but I needed to re-engergize first, so we spent the weekend at a picnic
and
saw the fantastic movie The other sister. It was great, talk about
laugh
and cry in the same sentance, anyway, today we went the another
fostercares, son's Naming ceremony (bio child), and our agenices manager,
fab lady, was there, so guess what she made the fatal mistake of asking
when Laura was coming. Luckly we have a good friendship as well as
her
being my sort of Boss in fostering.
She was mad as hell when I told her what was going on, she offered
to help
in anyway she can, but suggested that we try to do it ourselves although
she will speak to the SW on Tuesday about our ability to cope etc,
she said
that, there is alot of politics going on between the agencies and the
goverment departments, so if she was seen to be interfering it could
go
against us, but she will get us the current policies and laws on adopting
so we can fight a fair fight.
I really get piss off, at the fact that this is a little girls life,
and
all though they claim to be working for her, they haven't even gone
about
working with us the right way, so its no wonder that this child is
still in
foster care although she has been avaliable for adoption for most of
her 17
months of life!!!!!!
I had a bath this evening and gees does that give you focus!!!!!!,
I wrote
4 pages of notes in amoung the bubbles, and my wonderful husband got
the
little joys off to bed, I had nearly forgotten what a bath was like,
theres
nothing like it Hheheheheheh.
The next letter I write will have some positive stuff in it, I promise.
there is one thing I would like to ask, We need some good aurguements
for
the positives of Laura, coming into a foster caring /bio family, can
anyone
give me some good statements, Tony and I have come up with the healthy
role
modelling, loving and caring inviroment etc,etc, But our heads are
slightly
emotional at present and are slightly clouded, and we can't come up
with
much else, although I have heaps in there just can't get though the
fog at
present Hehe.
Nicki, Mum, fostermum, soon to be adoptive mum, wife to 3 (nearly 4)
great
kids and and fantasic husband.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
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Date: Sun, 2 May 1999
22:31:49 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: thank you, this poem says it
all,
Comments: To: fostercare list letters <fphp@egroups.com>,
"D. Bas Denbraver"
<Denbraver@worldnet.att.net>
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Thanks from the buttom of our hearts.
Nickiand Tony, fostercarers, parents, soon to be adoptive parents, to
3
(nearly 4) great kids.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
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<html>
<head>
<meta http-equiv=3D"Content-Type"
content=3D"text/html; charset=3Diso-8859-1">
<meta name=3D"GENERATOR" content=3D"Microsoft FrontPage Express
2.0">
<title>Happy Easter To My Friend!</title>
<bgsound src=3D"St_Elmos_Fire.mid" loop=3D"1">
</head>
<body bgcolor=3D"#000000">
<div align=3D"center"><center>
<table border=3D"4">
<tr>
<td colspan=3D"3"><p
align=3D"center"><font color=3D"#FFFF00"
size=3D"5" face=3D"Comic
Sans MS"><strong>A Very Very Happy
Easter to My special Friend!</strong></font></p>
</td>
</tr>
<tr>
<td colspan=3D"3"><p
align=3D"center"><img src=3D"easter.JPG"
width=3D"600" height=3D"400"></p>
</td>
</tr>
<tr>
<td colspan=3D"3"><p
align=3D"center"><font =
color=3D"#FFFFFF"><br>
</font><font color=3D"#FFFFFF"
size=3D"5">D</font><font
color=3D"#FFFFFF" size=3D"4">ear
Friend,</font></p>
<p align=3D"center"><font
color=3D"#FFFFFF" size=3D"4">You are
my friend and I hope you
know that''s true.<br>
No matter what happens I
will stand by you.<br>
I be there for you whenever
you need.<br>
To lend you a hand to do
a good deed.<br>
So just call on me when
you need me my friend.<br>
I will always be there even
to the end.<br>
</font><font color=3D"#FFFFFF"><br>
</font><font color=3D"#FF8000">Forward
this Easter greeting
to all your friends to show
<br>
your friendship and watch
who sends it back !</font></p>
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colspan=3D"3"><font color=3D"#80FF80">This
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------=_NextPart_000_01BE94EB.919A8180--
=========================================================================
Date: Sun, 2 May 1999
21:36:24 -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: Baby Update
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
contgrates, so happy to hear everyone is doing well.
Nicki, Mum, fostermum, soon to be adoptive mum, wife to 3 (nearly 4)
great
kids and and fantasic husband.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
=========================================================================
Date: Sun, 2 May 1999
22:41:42 -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: HELPS IF I SEND THE RIGHT POEME~!
Comments: To: fostercare list letters <fphp@egroups.com>,
"D. Bas Denbraver"
<Denbraver@worldnet.att.net>
MIME-Version: 1.0
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Try this one, gees I need a holiday !!!!!!!
Nicki, Mum, fostermum, soon to be adoptive mum, wife to 3 (nearly 4)
great
kids and and fantasic husband.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
------=_NextPart_000_01BE94EC.F32DA480
Content-Type: application/octet-stream; name="friends on the net.htm"
Content-Transfer-Encoding: quoted-printable
Content-Description: friends on the net (Internet Document (HTML))
Content-Disposition: attachment; filename="friends on the net.htm"
<HTML>
<HEAD>
<TITLE>Friendship </TITLE>
<META HTTP-EQUIV=3DREFRESH CONTENT=3D"1500; =
URL=3Dhttp://www.theglobe.com/login/logout.taf?src=3Dhp"></HEAD>
<BODY=20
background=3D"heartbg2.gif"BGCOLOR=3D"#FFFF
FF" TEXT=3D"#000000"
LINK=3D"#0000FF" ALINK=3D"#FF0000"
VLINK=3D"#FF00FF"><SCRIPT LANGUAGE=3D"JavaScript">
<!-- hiding
var remoteWin =3D null;
var popup_url =3D =
"http://adpop.theglobe.com/popup/default.ad?ord=3D28746&username=3DDiane3=
4";
if (self.parent.frames.length =3D=3D 0){
self.name=3D"preview";
}
function popup_hp_ad() {
remoteWin =3D window.open(popup_url,
"ad_popup", =
"toolbar=3D0,location=3D0,directories=3D0,status=3D0,menubar=3D0,scrollba=
rs=3D0,resizable=3D0,width=3D630,height=3D100");
}
popup_hp_ad();
// End of hiding -->
</SCRIPT>
<noscript>
<CENTER>
<TABLE WIDTH=3D"468" HEIGHT=3D"60"><TR><TD>
<A =
HREF=3D"http://ad.doubleclick.net/jump/www.webgenesis.com/hppopup/;sz=3D4=
68x60;ord=3D17101">
<IMG =
SRC=3D"http://ad.doubleclick.net/ad/www.webgenesis.com/hppopup/;sz=3D468x=
60;ord=3D17101" WIDTH=3D"468" HEIGHT=3D"60" BORDER=3D"0"></A>
</TD></TR></TABLE>
</CENTER>
</noscript><font color=3Dblue><font=20
size=3D6><center><i><b>=20
~FRIENDSHIP~</font></i></B><cen
ter><font size=3D4><i><b><br><br><img=20
src=3Dhttp://www.drfun.com/heart.gif=20
width=3D100 height=3D100><br><br>
Friendship is a strange thing. We find=20
ourselves telling each other
the<br>
deepest details of our lives ...=20
things we don't even share with the<br>
families who raised us.<br>
But what is a friend? A confidant? A=20
shoulder to cry on? An ear to<br>
listen? A heart to feel? A friend is=20
all these ... and more. No
matter<br>
where we met, no matter how long we've=20
been together ... I call you<br>
friend. A word so small, yet so large=20
in feeling, a word filled with<br>
emotion, a word overflowing with love.=20
Truly great things come in
small<br>
packages. Once the package of=20
friendship has been opened, it can=20
never
be=20
closed.<br>=20
It is a constant book always waiting=20
... waiting to be read ... =20
and<br>
=20
enjoyed. We may have our=20
disagreements ... we may have our<br>
disappointments ... we may argue ...=20
we may concern one another ...<br>
friendship is a unique bond that lasts=20
through all tribulations. A
part<br>
of each of us goes into our=20
friendships ... our humor ... our<br>
experiences ... our tears. Friendships=20
are foundations ... necessary
for<br>
life ... and love.<br>
Friends ... you and me ... you brought=20
another friend and then<br>=20
we were three ... we started our group=20
... our circle of friends<br>=20
... there is no beginning ... there is=20
no end<br>
<br> =20
THIS MESSAGE HAS BEEN SENT TO YOU=20
BECAUSE YOU HAVE BEEN REMEMBERED
IN A<br>
SPECIAL WAY BY A FRIEND. KEEP IT=20
GOING. MAIL IT TO YOUR FRIENDS ...
MAIL<br> IT TO THOSE YOU HAVE NEVER MET=20
... AND THOSE YOU HAVE LOST ALONG=20
THE<br>
WAY. IT WILL KEEP YOUR FRIENDSHIP=20
GOING ON AND ON.<br><font size=3D3>Author=20
unknown
<br><br><center><img=20
src=3D"roseanim.gif" width=3D150=20
height=3D150>=20
<br><br></font><center><font=20
size=3D3><FONT FACE=3D"Arial"> <B>
<A=20
HREF=3D"http://www.freeguestbooks.com/cgi
-bin/view.pl?Diane34">
View My guestbook</A>
<br><A=20
HREF=3D"http://www.freeguestbooks.com/">
<IMG=20
SRC=3D"http://www.freeguestbooks.com/butt
on.gif" WIDTH=3D"88"
HEIGHT=3D"31" BORDER=3D0></A>
<br><A=20
HREF=3D"http://www.freeguestbooks.com/cgi
-bin/sign.pl?Diane34">
Sign my=20
guestbook</A></B></FONT><br>
<br><b>172563</BODY>
</HTML>
=20
=20
=20
=20
=20
------=_NextPart_000_01BE94EC.F32DA480--
=========================================================================
Date: Sun, 2 May 1999
07:52:30 -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: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: hands and cars
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Ann,
Seth's physician in Miami took x-rays of Seth's hands while we were
there and said that he still had growth plates so he could not
straighten the fingers yet. We are to go back next year for him to
recheck. He said that Seth's fingers are still growing.
Seth also had
the rosebud hand and has had surgeries similar the ones Amy has had.
By the way, we removed the bandages from the left hand yesterday. It
has
healed nicely. He was able to play computer games yesterday for
the
first time since March 12th. He was thrilled. He loves to race
cars and
motorcycles.
Which brings me to Beth. Hang in there Mom. This is a scary
time in a
parents life. They do learn to drive and usually master it.
After all,
we all did. My parents were so nervous about me driving that
I had to
buy my own car before I finally learned. Give Tim my best.
Warmly, Dori
=========================================================================
Date: Sun, 2 May 1999
15:35:08 +0300
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: "Xanthi D. Apostolidou"
<apostolidou@FREEMAIL.GR>
Subject: Re: Baby Update
MIME-Version: 1.0
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boundary="----=_NextPart_000_0014_01BE94B1.5C3741C0"
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Dear Martha and Ryan,
Congartulations on your babies' arrival.
Marianna and Xanthi Apostolidou.
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<META content=3D"text/html; charset=3Diso-8859-7" =
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<STYLE></STYLE>
</HEAD>
<BODY><FONT size=3D2>Dear Martha and Ryan,<BR>Congartulations
on your =
babies'=20
arrival.<BR><BR>Marianna and Xanthi =
Apostolidou.<BR><BR></FONT></BODY></HTML>
------=_NextPart_000_0014_01BE94B1.5C3741C0--
=========================================================================
Date: Sun, 2 May 1999
15:42:30 +0300
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: "Xanthi D. Apostolidou"
<apostolidou@FREEMAIL.GR>
Subject: Helen-Raphaela is born
MIME-Version: 1.0
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boundary="----=_NextPart_000_0046_01BE94B2.637EDAA0"
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charset="Windows-1252"
Content-Transfer-Encoding: quoted-printable
Please welcome our first niece Helen-Raphaela to the world. She was
born =
on
Tuesday the 13th of April in Greece. Her mother Tereza did't have the
=
chance
to bring her home first, because Doctors kept our baby at hospital
for =
an "endless" week. Baby's born was a shock for the familly. Apert =
syndrome was almost unkown to us. I just heard about it when
I was in =
medical school (I am a Cardiologist).
Very soon I understoond that we are not alone, because I found this
list
searching the Internet. Never in my life did I feel to be so close
to =
fiends. When I told Tereza (the mother) about this group it gave much
=
hope to her. She saw some pictures of your children (from the Web).
She =
could'n believe that an Apert child could get such good reconstruction.
=
She seems to be really willing to take part in pictures' exchange.
Familly needs your support. We would be grateful if you could provide
us =
a
piece of information about doctors and Centers of Reconstruction in
the =
USA
or even in Europe; especially for her hands.
In ten days' time, we are going to a children's Hospital in Athens
to =
evaluate some breathing problems that Raphaela has, and the level of
=
synostosis of the skull.
Best wishes to all the children that are going to get a surgery. Hope
to =
keep in touch with you all,
Xanthi D. Apostolidou
Cardiologist
apostolidou@freemail.gr
and
Marianna Apostolidou
Physiotherapy Major
marianne@freemail.gr
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<HTML><HEAD>
<META content=3D"text/html; charset=3Dwindows-1252" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff><FONT size=3D2>Please welcome our first
niece =
Helen-Raphaela=20
to the world. She was born on<BR>Tuesday the 13th of April in Greece.
=
Her mother=20
Tereza did't have the chance<BR>to bring her home first, because
Doctors =
kept=20
our baby at hospital for an "endless" week. Baby's born was a shock
for =
the=20
familly. Apert syndrome was almost unkown to us. I just heard =
about it=20
when I was in medical school (I am a Cardiologist).<BR>Very soon
I =
understoond=20
that we are not alone, because I found this list<BR>searching the
=
Internet.=20
Never in my life did I feel to be so close to fiends. When I told Tereza
=
(the=20
mother) about this group it gave much hope to her. She saw some pictures
=
of your=20
children (from the Web). She could'n believe that an Apert child could
=
get such=20
good reconstruction. She seems to be really willing to take part in=20
pictures' exchange.<BR>Familly needs your support. We
would be =
grateful if=20
you could provide us a<BR>piece of information about doctors and
Centers =
of=20
Reconstruction in the USA<BR>or even in Europe; especially for her
=
hands.<BR>In=20
ten days' time, we are going to a children's Hospital in Athens to
=
evaluate some=20
breathing problems that Raphaela has, and the level of synostosis of
the =
skull.<BR>Best wishes to all the children that are going to get a
=
surgery. Hope=20
to keep in touch with you all,<BR><BR>Xanthi D.=20
Apostolidou<BR>Cardiologist<BR><A=20
href=3D"mailto:apostolidou@freemail.gr">apostolidou@freemail.gr</A><BR>an=
d<BR>Marianna=20
Apostolidou<BR>Physiotherapy Major<BR><A=20
href=3D"mailto:marianne@freemail.gr">marianne@freemail.gr</A><BR><BR><BR>=
<BR><BR><BR></FONT></BODY></HTML>
------=_NextPart_000_0046_01BE94B2.637EDAA0--
=========================================================================
Date: Sun, 2 May 1999
09:54:03 -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: "R. Fletcher"
<taz26@CONCENTRIC.NET>
Subject: Various
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello all,
I haven't written in months but I have been
reading all the emails.
There have been a few changes in my life since I last wrote.
For all the new families, welcome. My name is Rachel
Fletcher. I am
25 and I have Apert Syndrome. I have been though all the surgeries.
The
first was in beginning of 93. I had mid face advancement including
8
weeks of my mouth being wired shut. Then through that year, I had a
couple more to make my eyes and nose smaller. At the time I was going
thought all of this, I hated it. But know looking back I would do it
all
over again. Also I never did have any bad feeling against my parents
during the surgeries. I would always look for them for comfort. I do
have all five fingers but I don't have any middle knuckles.
I have an Associate's degree in Computer Programming
but for now I
am a Collections Specialist. I do have alot of friends, but there are
also alot who still stare. Now that I am older it doesn't bother me
as
much.
I was married for 2 years, but in February
of this year I moved out
and my husband and I are getting a divorce. This has been a hard time
for me, but I am slowly getting over it.
I am also going to be an aunt for the first time
in June. My
sister-in-law is pregnant with their first child. Also congrats
to the
new births.
Since I know what some of you are just now going
through, please
feel free to email me with any questions. I will try and help as much
as
possible. Hope everybody is recovering from any surgeries and good
luck
to those about to have them.
Rachel Fletcher
taz26@concentric.net
=========================================================================
Date: Sun, 2 May 1999
11:12:48 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: BBarn60368@AOL.COM
Subject: Re: I've been out
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Liz,
It certainly sounds like a rough week and yes, I will say a prayer
for you
and yours!
Love,
Alice in Orlando
=========================================================================
Date: Sun, 2 May 1999
11:19:37 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: BBarn60368@AOL.COM
Subject: Re: Emily's surgery
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Janine:
I know what you mean about being disappointed when a surgery is put
off. To
me, the first time it happened to us, I felt like I had received a
stay of
execution.
Much love and prayers,
Alice
=========================================================================
Date: Sun, 2 May 1999
12:02:43 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: Shootings
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Judy:
I agree wholeheartedly! Those two boys chose evil/the devil/wrong
over
good/God/right and that is the bottom line. We parents need to
chose God and
live Godly and pray that our children do the same when they are old
enough to
understand and make their own choice.
Much love:
Alice in Orlando, Fl.
=========================================================================
Date: Sun, 2 May 1999
12:15:33 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: BBarn60368@AOL.COM
Subject: Re: Baby Update
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Bradely's:
CONGRATULATIONS! Much love to you all.
Alice in Orlando
=========================================================================
Date: Sun, 2 May 1999
12:35:38 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: Shootings
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Frank:
"Religion" is not always spirituality and an example of being right
with God.
"Religion" was man-made. Also, being saved does not mean
that you quit
sinning. It does not mean we turn into God, it means we strive
to be
"Godlike". It is not an easy journey, but it is the right journey.
Much love and may God bless,
Alice
=========================================================================
Date: Sun, 2 May 1999
11:35:52 -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: Judy Amerman
<jamerman@UTI.COM>
Subject: Nicks page
MIME-Version: 1.0
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A big thank you to Don for getting Nick's page updated so Nick's daddy
=
can see it!!!!
You are a doll Don!!
If you go to Nick's page you will be able to see last year's Midwest
=
Gettogether and meet the Tingleys, Dori and Seth. Laurie Bailey
and =
kids and of course us.
You will also get to see Nick and Teeter and Don too.
thanks again for the update Don. =20
Have to go now, Nick's b-day party is in two hours.
Judy
jamerman@uti.com
------=_NextPart_000_0011_01BE948F.EF7355E0
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
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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>A big thank you to Don for getting
=
Nick's page=20
updated so Nick's daddy can see it!!!!</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>You are a doll Don!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>If you go to Nick's page you
will be =
able to see=20
last year's Midwest Gettogether and meet the Tingleys, Dori and =
Seth. =20
Laurie Bailey and kids and of course us.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>You will also get to see Nick
and =
Teeter and Don=20
too.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>thanks again for the update
Don. =20
</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Have to go now, Nick's
b-day =
party is in two=20
hours.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV> </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_0011_01BE948F.EF7355E0--
=========================================================================
Date: Sun, 2 May 1999
14:00:13 -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
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Re: hands
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I think that the issue of the growth plates only comes into play when
you
are dealing with straightening fingers, not separating them from one
another. Alex has very small hands too for a nine year old but I think
that
it must just be part of the syndrome . The rest of his body is large
for his
age.
-----Original Message-----
From: Howard & Ann <howrdnan@IHUG.CO.NZ>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, May 01, 1999 7:10 PM
Subject: Re: hands
>>The only crucial thing to think about is that in terms of straightening
the thumbs, they should wait until the child is at least 8 years old,
or
else the growth plates in the bone can be damaged and the digit will
not
grow as it should.
>
>The timings with some of these emails is amazing!! Amy, I had
just sent a
message asking about growth plates (I have now deleted it) and now
you
mention them. Do you know what actually happens?
>
>With all the work done on our Amy's hands I am wondering if disturbance
of
growth plates could be one of the reasons her hands are so small.
But we
couldn't have left her with rosebuds (no separation) all these years.
>
>Oh well, noone said life was going to be easy did they!
>
>Cheers
>Ann
>NZ
>
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Date: Sun, 2 May 1999
15:23:54 EDT
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From: Firefli007@AOL.COM
Subject: Re: Shootings
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Hello all... Jenny from Georgia here.
Just my two cents... "Religion" and Spirituality are two different things.
I
belong to the Catholic Church, but that does not determine my spirituality.
I find that in me.. the very core of who I am. Going to church helps
me
celebrate my spirtuality but it does not determine it.
Coming from a great
family and having a peer support of people whoi helped me believe in
me gave
me "shield " against all of the teasings and hurtful remarks of the
world.
What the world needs is love and tolerance.
There's an old Irish Prayer that goes something like this...
If there be beauty in the character there will be harmony in the home.
If there be harmony in each home there will be love in the nation.
With love there will be peace uin the heart of the nation.
When there is tolerance in each nation there will be true peace.
Then we will have heaven on earth.
Love your kids and tell them always that God don't make junk. With that
love
and support in their hearts, they will fly on the wings of eagles.
God Bless everyone. Always.
Jenny
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Date: Sun, 2 May 1999
16:31:30 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Shootings
In-Reply-To: <335ebbf0.245dd123@aol.com>
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> I agree wholeheartedly! Those two boys chose evil/the devil/wrong
over
> good/God/right and that is the bottom line. We parents need
to chose God and
> live Godly and pray that our children do the same when they are old
enough to
> understand and make their own choice.
When I wrote the post, I really tried to avoid a single
faith
tradition. I do know "nonbelievers" who are deeply spiritual
people.
I put that in quotes, because they do believe in SOMETHING, just not
from the same perspective as me. I've never met anyone who was
completely without some sort of belief system who was happy and
self-directed. I did mention worship, as that's the most common
way
to share spirituality in Western countries -- but I didn't intend to
exclude those with different traditions. Some people clearly
understood, one was apparently offended, and I regret that. We need
more unity in this world if we are to head off more Columbines.
I was very proud of my (then 14 year old) son who
reported some
dangerous behaviour by one of his friends to that friend's mom --
putting his friend's life and health ahead of the friendship.
They're still friends, thank goodness, and the friend's mom just
served as Danny's Confirmation sponsor. It's not always easy
or safe
or comfortable to do what needs to be done. The parents
on this
list know that far better than I.
Judy
Judy
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Date: Sun, 2 May 1999
18:08:12 EDT
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: which doctor to trust w/ my
son's hands
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Hey everyone,
I've been following most of the emails about hands and there must be
a
million ways to do different hands. This is all very confusing
for me. We
have a 2 1/2 month old son, Mason, whose bones in his fingers are perfectly
developed and he also has all of his joints. We took him to a
local hand
surgeon and he said it would be no problem having functional &
good looking
hands for him. He says he uses a zig-zag cut and he says there
is no need
for skin grafts if he does it this way. He also said that he
could
straighten the thumbs at the same time. However, we just came
back from
visiting Dr. Fearon in Dallas, and he said that the zig zag cut makes
too
many scars, so he prefers skin grafting. He also says he would
wait to
straighten the thumbs. I am now very confused about what to do.
We do have
a few months to decide. Both doctors agreed that the operation
should be
done at about a year.
Does anyone know of a very good HAND surgeon who is well versed w/ Aperts
kids & has a good reputation?
We have decided that Dr. Fearon will do the forehead advancement and
cleft
palate repair, but we want a surgeon who just does hands.
Thank you everyone for your input. I'm usually lurking, so I have
learned A
LOT from everyone.
Sincerely,
Karin Pittman (Mason's mom) in rainy Denver, Colorado
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Date: Mon, 3 May 1999
10:13:15 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: Helen-Raphaela is born
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Welcome little one, I can't help with the Doctors, but I wish your family
the best,
Nicki, Mum, fostermum, soon to be adoptive mum, wife to 3 (nearly 4)
great
kids and and fantasic husband.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
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Date: Sun, 2 May 1999
19:20:32 -0400
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From: Mechelle Holt
<tholt@WEBTV.NET>
Subject: Re: which doctor to trust w/
my son's hands
In-Reply-To: Karin Pittman <KMea854818@AOL.COM>'s message
of Sun, 2 May 1999
18:08:12 EDT
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Hi Karin~
This may or may not be much help, but we got three opinions
on
Courtney's hands. She is 11 months old tomarrow! The first
two dr's
said amputate a finger, the third dr. (Louis Argenta at Wake Forest
University in North Carolina) said he could make her 10 functional
fingers, and did! She has no knuckles, so she can't bend her
fingers,
but can pick up anything she desires. However, he is a plastic
surgeon
who is doing all her surgeries with the assistance of other specialist.
He has several Apert patients. Two surgeries on her hands, and
skin
grafts from her groin made it all possible. We are beyond belief
at hat
this man has done for our child, when everyone else wanted to wait.
She
has had 3 surgeries, and her 4th one on the 19th of this month, will
be
to repair her (soft) cleft palate.
Mechelle
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Date: Sun, 2 May 1999
19:32:30 -0400
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From: Mechelle Holt
<tholt@WEBTV.NET>
Subject: Re: hands
In-Reply-To: Dora Jefferson <dajeff@SIU.EDU>'s message of
Sun, 2 May 1999
07:52:30 -0500
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Another interesting twist to our story, is that this Dr didn't even
do
any x-rays, when the other two doc's that wanted to amputate done
xray's.
Mechelle
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Date: Sun, 2 May 1999
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: which doctor to trust w/
my son's hands
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Mechelle,
Did the surgeon use that zig-zag cut? If so, are there scars?
Thanks,
Karin Pittman (Mason's mom)
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Date: Sun, 2 May 1999
22:10:43 -0400
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From: Mechelle Holt
<tholt@WEBTV.NET>
Subject: Re: which doctor to trust w/
my son's hands
In-Reply-To: Karin Pittman <KMea854818@AOL.COM>'s message
of Sun, 2 May 1999
20:55:40 EDT
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Karin~
Yes there are scars, and he didn't do the zig-zag. She
also has scars
on her groin from the grafts, but if it were not for this Dr., she
would
not have had ten functional fingers. I would also reccomend having
them
done early, due to their learning. Courtney has came a long way
since
her hand surgery. Also as an infant without much mobility in
her hands,
I tied a piece of ribbon from one side of her play pen, then I put
rattles, and differet small toys on the ribbon, then tied it
to the
other side of the play pen. This gave her an incentive to use
her arms,
and later her hands. The last evaluation we had from the Developmetal
Evaluation Center, we were told she didn't need physical theapy at
this
time. :)
Mechelle
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Date: Mon, 3 May 1999
00:30:39 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Questions Fingers
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My daughter Samantha is scheduled to have her index fingers release
June l8th
at 7 months old. Then we will go every two months to release
the others.
Our doctor also said the earlier the better.
Lisa Guyette
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Date: Mon, 3 May 1999
01:18:59 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Might be behind, but they catch
up
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Mechelle,
You note reminded me that I wanted to comment on how good Courtney's
fingers
look in the pictures you sent.
Nicki,
It seems like a lot of our cuties have red hair. You keep fighting
we'll
keep praying for Laura. This little girl is going to be
so loved from
people all over the world. Has Laura had any surgeries
yet? That would
make me so mad if this is all on hold too. If you still have
Laura's picture
I would love a xerox of it. And yes baths are the answer
to all problems.
Samantha will be six months in nine days. If she touchs
her head I'm
thrilled so I really don't notice if she's falling behind. And
she is my
first child so I really don't have anything to compare with.
But it seems
that when I find she's behind she will all of a sudden catch up.
I believe
that she will do everything she chooses. She still spends most
time on back,
with a few turns to right or left. She really has trouble getting
her head
up from tummy. Her forehead is heavy for her But she is
getting better at
it. Last week I asked the therapist if she was behind in
sitting up and she
said yes. So all weekend we worked on it. I think she really
enjoyed
falling back onto pillows. But by the end of tonight she
sad unassited for
a full minute and was really proud of herself. I
also saw a baby holding
on to her mom the other day. She gave better eye contact than
Samantha and
seemed a little older. I asked and found she is only three days
older. I
told her my daughter's birthday (who was home) and the mom said Oh
isn't it
great that they can now hold onto their bottles. I smiled and
realized that
she'll hold it while I hold it. That night I gave her jucie
for the first
time in a cup and wouldn't you know she grapped it out of my hand and
drank
it all by herself and then the next day she did the same with her bottle.
It's like my mom said so what if she's a month or two behind, at 26
years old
it won't mean a thing.
And she has never given direct eye contact (some say it's hard for her
to
look straight on with her forehead, others say she might need glasses)
but
she shocked me last week when she was facing me on my legs. I
was talking to
my husband and looked at her and she was staring at me with great interest.
Yea!
Love,Lisa Guyette
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Date: Mon, 3 May 1999
20:23:27 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Tolerance (was Shootings)
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Hi Jenny from Georgia
>Just my two cents... "Religion" and Spirituality are two different
things. I
>belong to the Catholic Church, but that does not determine my spirituality.
>I find that in me.. the very core of who I am.
I'll go along with that.
What a lovely prayer, and so true. At a recent celebration of cultures at Amy's school 37 different cultures from around the world were represented - and there are around 600 children at the school. I consider this a very healthy environment for my daughter to grow up in. If these children can learn to work together (and I know some of them do find it difficult) then maybe we can avoid some of the dreadful conflict occurring around the world at the moment.
Regards,
Ann
NZ
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Date: Mon, 3 May 1999
20:23:31 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: hands and cars
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Thanks Dori and Amy for the info on growth plates. Must remember to ask next time we are talking hands with the surgeons.
Regards
Ann
NZ
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Date: Mon, 3 May 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Might be behind, but they
catch up
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Lisa, I am still learning not to worry if Amy (8yrs) is a little behind at things. Every time she gets me to the point where I am going to take major action...whammo, she up and does it! The latest was with maths. By the end of last year we were ready to go for remedial work, but this year she is really getting it together.
The advantage of all this is that we probably take a closer interest in what she is doing than other parents probably do, so we are pretty clued up on developmental stages as she reaches each one.
And isn't it just sooo interesting watching them go through all these stages.
Best wishes
Ann
NZ
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Date: Mon, 3 May 1999
07:10:52 EDT
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From: Jenngram@AOL.COM
Subject: Re: Might be behind, but they
catch up
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My mom often tells me that I am on "hightened alert" because of the
syndrome.............Every fall, stutter, lack of concentration to
lack of
appetite, I seem to question. She seems to think if it weren't for
the
syndrome, I'd just write it off to Jordan just being a little boy.
So, I have
been trying to look at things from a 2 yr olds vantage point (I can't
believe
hes already almost 2!!!)...Hopefully, I won't be so stressed about
every
little thing all the time.
Well, the movers are here to take our stuff to Ohio, so a quick goodbye
to
all of ur Florida friends...and hello to our new Ohio neighbors.
Good Luck to everyone having surgeries and evals while my computer is
out of
order for the next couple of weeks...talk about panic time, I really
must
invest in a laptop!!!
Jenn(Tampa/St. Pete.......soon Columbus, Ohio....hows that for a change
of
scenery)
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Date: Mon, 3 May 1999
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From: Yonstein@AOL.COM
Subject: Re: teen-age doings
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Dear Beth:
Thanks for sharing the news of Tim's good things going on. It's
great to
hear that life is "normal", although I've often said I don't know what
that
is anyway.
I can look forward to all of those things, but I don't know if I will
ever be
ready for the driver's permit. Good luck with the performance
of the show.
Best wishes,
Janine Krebs
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Date: Mon, 3 May 1999
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From: BBarn60368@AOL.COM
Subject: Re: Shootings
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Jenny:
So very well put!! I admire your way with words and your strength.
Much love and may God Bless,
Alice in Orlando, Fl.
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Date: Mon, 3 May 1999
21:15:40 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Might be behind, but they
catch up
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Lisa,
Sounds like Samantha isn't behind at all. Sometimes I worry about Carlee
being a little behind also, but her therapist always reminds me that
even
babies that don't have apert syndrome do things a little slower than
others.
I can't remember when Carlee started sitting up. But I belive it was
a little
after she was 6 mos. She also had a hard time at first with being on
her
tummy and lifting her head. NOw she does it all the time and crawls
too. I
think you said it right, they do things at their own pace. Everytime
I think
to myself that Carlee is a little behind on something she starts doing
it
too. On the hand surgery issue, our Doctor did Carlee's first one at
4 mos.
and said he likes to have all the fingers released by age 2.
But all Doctors
are different. Because I have heard some say they like to wait until
they are
a little older for further bone growth. I hope everyone else
is doing well.
Take Care,
Cristy and Carlee
in Florida
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Date: Mon, 3 May 1999
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: which doctor to trust w/
my son's hands
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Dear Karin,
I would like to give you my opinion about
Dr Fearon as your hand
surgeon. He has done our sons hands in 2 operations. When Collin was
about 10
months old he seperated the index and pinkys on both hands then at
about 14
months (can't remember exactly how old he was) he had the middle fingers
seperated. All were skin grafts taken from the groin area. Collins
hands look
great!!! Dr Fearon is a wonderful hand surgeon. The only thing we have
to do
is put sunblock on the skin grafts because they tend to tan darker
than the
rest of the finger. Collin is now 7 & you don't notice the skin
grafts at
all. In 97 we chose to have "permanent bends" put in his right
hand &
straighten the thumb. The bends allow for a better "finger to thumb"
pinch.
He does very well with his hands. It also helps him to hold a pencil
&
crayons, etc. I think maybe the thumb has turned back some to
its original
position. Holding off a while on straightening of the thumbs would
probably
be wise until a little bit older ( Collin was 5 at the time).
Dr Fearon is also our cranial surgeon. Collin
is scheduled for the
midface advancement/RED system on June 2nd. He assisted Dr. Munro,
who has
since retired, on the first cranial/forhead advancement when Collin
was 4
months old. They did a great job. You won't find a more caring &
compassionate & competent doctor anywhere!
Hope this helps! These are tough decisions
we have to make for our
children. I know you will do what is best for Mason.
Regards,
Shirley Tanner
Hartford, Alabama
PS I am attaching a picture of Collin. I wish it had his
hands shown for
you.
=========================================================================
Date: Mon, 3 May 1999
21:51:52 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: which doctor to trust w/
my son's hands
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Karin,
Hit send before attaching :)
=========================================================================
Date: Mon, 3 May 1999
22:24:39 -0400
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From: Mechelle Holt
<tholt@WEBTV.NET>
Subject: Re: Might be behind, but they
catch up
In-Reply-To: Lisa Guyette <LAM1126@AOL.COM>'s message of Mon,
3 May 1999
01:18:59 EDT
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Hi Lisa!
Thank you! When Courtney went through her evaluation,
she was 9
months old, and still not sitting up. I tried everything in the
world,
but nothing seemed to do any good. At the evaluation I was told
to sit
in front of her, so she wouldn't feel the need to fall back, if she
is
trying to catch herself from falling. Within a month, she was
sitting
successfully. Within the last 2 months, she has hit a growth
spurt!
She is now standing, and making the transition from the couch to the
coffee table, and pulling up!
Whew! What a busy week! Today is our anniversary, and Courtney
turned
11 months old today! Friday is Tim's birthday, and Sunday is
Mother's
Day.
Mechelle
NC
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autostart="true">
</body>
</html>
--WebTV-Mail-1814851162-3825--
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Date: Mon, 3 May 1999
22:35:39 -0400
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From: Mechelle Holt
<tholt@WEBTV.NET>
Subject: Pictures
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Hi!
It is me again! :)
I have received pictures from the Williams, Kerebs, and Guyette
families.
These pictures are so cute! It is truly amazing what all these
kids go
through, and they are still happy! Is there anyone I missed,
when
sending pictures out? I am putting Courtney's scrapbook together,
so I
guess I had better get go, and get it finished!
Mechelle
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=========================================================================
Date: Tue, 4 May 1999
02:31:34 -0400
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Lynn Thornquist
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Hi Gail,
Unfortunately, there is no baby yet. I have been off the medication
since the
24th of April and still no baby. I am getting very antsy.
I have plenty of
contractions and pains, but no dilation. I have a hard time sleeping
these
nights. It is like planning a vacation and then it never happening.
Kind of
disappointing. Not to mention, everyone keeps calling to see
if I have had the
baby yet and I have to say "no".
I will definately let everyone know when the day arrives.
Talk to you real soon.
Lynn
p.s. How are things going with you? Have you gone
to Washington, D.C. yet?
Is there a scheduled date for the surgery? Hope things are going
well for you.
=========================================================================
Date: Tue, 4 May 1999
03:01:16 -0400
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: which doctor to trust w/
my son's hands
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Karin,
As everyone could tell you.....I am known for singing my son, Andrew's,
hand
surgeon. Dr. Joseph Upton has done both of Andrew's hand surgeries
and they
have come out terrific. He has alot of knowledge about Apert
Syndrome itself,
as well as the hands and funtion of such. I think he would be
a great place to
start with your search for a second opinion.
I can't think of his address off hand (no pun intended), but here is
his name
and #.
Dr. Joseph Upton (Plastic Surgeon for Hands)
(617) 739-1972
Good luck with your search.
Lynn Thornquist
rlthorn@earthlink.net
p.s. Please feel free to contact me personally.
=========================================================================
Date: Tue, 4 May 1999
11:12:36 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Might be behind, but they
catch up
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Lisa Guyette wrote:
>
> Mechelle,
> You note reminded me that I wanted to comment on how good Courtney's
fingers
> look in the pictures you sent.
>
> Nicki,
> It seems like a lot of our cuties have red hair. You keep fighting
we'll
> keep praying for Laura. This little girl is going to
be so loved from
> people all over the world. Has Laura had any surgeries
yet? That would
> make me so mad if this is all on hold too. If you still have
Laura's picture
> I would love a xerox of it. And yes baths are the answer
to all problems.
>
> Samantha will be six months in nine days. If she touchs
her head I'm
> thrilled so I really don't notice if she's falling behind.
And she is my
> first child so I really don't have anything to compare with.
But it seems
> that when I find she's behind she will all of a sudden catch up.
I believe
> that she will do everything she chooses. She still spends most
time on back,
> with a few turns to right or left. She really has trouble getting
her head
> up from tummy. Her forehead is heavy for her But she
is getting better at
> it. Last week I asked the therapist if she was behind
in sitting up and she
> said yes. So all weekend we worked on it. I think she
really enjoyed
> falling back onto pillows. But by the end of tonight
she sad unassited for
> a full minute and was really proud of herself.
I also saw a baby holding
> on to her mom the other day. She gave better eye contact than
Samantha and
> seemed a little older. I asked and found she is only three
days older. I
> told her my daughter's birthday (who was home) and the mom said Oh
isn't it
> great that they can now hold onto their bottles. I smiled and
realized that
> she'll hold it while I hold it. That night I gave her
jucie for the first
> time in a cup and wouldn't you know she grapped it out of my hand
and drank
> it all by herself and then the next day she did the same with her
bottle.
> It's like my mom said so what if she's a month or two behind, at
26 years old
> it won't mean a thing.
>
> And she has never given direct eye contact (some say it's hard for
her to
> look straight on with her forehead, others say she might need glasses)
but
> she shocked me last week when she was facing me on my legs.
I was talking to
> my husband and looked at her and she was staring at me with great
interest.
> Yea!
>
> Love,Lisa Guyette
Lisa:
My son Joseph is now six
years old. He too was delayed at times,
primarily to the many hospital visits and surgeries. (He would make
some
progress, only to have another surgery and be in casts or splints for
weeks.) Then he would catch back up, thanks to some wonderful
therapists. He also had trouble focusing with his eyes, but after his
cranial surgeries and glasses, he is doing fine. He is now in
kindergarten and is doing great. He is at the same level as the
other
kids intellectually; he IS having trouble with his hands and their
function. Joseph has five fingers on one hand, and four on the
other.
Writing, drawing, cutting, pasting - these are very difficult for him.
His teachers have adaptive scissors for him, which helps, and use the
computer for a lot of his work. They also use stamps for a lot
of his
paperwork. But he will always have trouble gripping larger items,
because of the loss of the middle joint in his fingers.
Just wanted to give you
a little insight from a mother who has been
there.
Joni
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Date: Tue, 4 May 1999
13:46:39 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Might be behind, but they
catch up
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bye Jenn, good luck in your new town and your new home, will miss
you while
your off line for a while talk to you when you get back on. love Marilyn
=========================================================================
Date: Tue, 4 May 1999
14:04:00 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Might be behind, but they
catch up
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DEAR MECHELLE AND TIM, HAPPY ANNIVERSARY, HAPPY BITHDAY TO TIM AND HAPPY
MOTHER'S DAY TO YOU AND HAPPY MOTHER'S DAY TO ALL THE MOM'S ON
THE LIST.
LOVE MARILYN
=========================================================================
Date: Tue, 4 May 1999
18:55:08 -0700
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