Bob
Tim also had acne, primarily on his back, chest, and arms. He
had very
little on his face. The texture of his skin on his back and arms
was also
very rough. He just completed a six month regimen of accutane.
The
dermatologist said he almost never starts out with accutane...a very
strong
drug. However, when he initially saw Tim he thought it was the
way to go.
Tim's skin really looks great now. It also feels softer, less
sand-papery.
I think the timing was good on the accutane because you really can't
go out
in the sun and he's done just as summer begins.
I remember when he came
home after his mid-face and his skin looked
so great...for a short time. I mentioned it to my pediatrician
and he smiled
and said, "With all the antibiotics he was on, that was sort of looking
shooting a fly with a cannon!" :)
Anyhow, hopefully his skin
will maintain how it looks now. Will let
you know!
Tim went to his prom last week...he looked SOOO handsome!
Beth Tolson
=========================================================================
Date: Sat, 29 May 1999
09:40:00 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: was scalp problems
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So, Beth, do we get the prom pictures? Would love to see
them.
Pat in Calgary
> Tim went to his prom last
week...he looked SOOO handsome!
>
>Beth Tolson
>
=========================================================================
Date: Sat, 29 May 1999
09:44:33 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi just This and that!
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Hi Everyone, Maxine here! I just thought I would add my two cents about
somethings; Bob I don't know if you know this but Iam an Adult with
Aperts.
I am 45 years old and happily married and have a teenage daughter.When
I
tenager I had acne really bad on my face and on my back, there was
also
places on my tummy. My mom took me to two different dermatologist.
One
didn't help at all and one put me on,Iam not sure of the spelling retna
A,
it helped,I also was put on a sort of diet which consist of staying
away
from fatty foods which was hard to do. I mostly stayed away from chocolates
and drank 1% fat milk, which I still do today. I also which I
still do to
this day is wash my hair everyday because it gets so oily by the end
of the
day. I am so used to doing it every morning that I say that Iam not
human
until I had my shower. I never had a problem with the zits in the hair
but I
have heard that this is an Aperts thing, but I don't think we'er
the only
people who get it. My normal teenage daughter has zits. I just think
its
just that some of us have it more then others.
Joni you are in my prayers with the
MRI testing. I hope the next MRI
on Joseph will be clear. I sure would get an second opinion. It doesn't
hurt!
To Ed I agree with Ann you should teach your daughter
how to write with
her hands bcause there will be times when she'll need to write and
there
won't be any conputers around. I use a standard Conputer with a standard
key
board. I have adapt by doing the pick and peck way. Which is normal
for me
and I think some normal adults do it that way too! I think Don said
it best
when he said to do everything as normally as possible and us kids will
adapt. I even played the piano and had no problems, My piano teacher
just
adpated some of the songs. You got to let this kids figure out things
for
them selves. This world isn't going to hand things to them on a silver
plater. I also use a regular mouse too!
I want to say to Liz Iam so sorry to hear about your
father-in-law. My prayers are with you all.
I too wanted to comment on
how we tend to push our needs aside. I
did the samething a couple of months ago. I got so caught up with
Babysitting and doing other things for other people that I got the
flu twice
and almost had a break down. So now I space myself and do things for
me. I
think that parents with handicapped children need to take a break every
now
and then and go out on a date with each other or just mom go out for
the
whole day and do what she wants. Thats what my mom did. It helped and
she
was a better mom for it. So Mom and Dads take some time and do something
for
you. Moms you do something alone too. The Kids need you and if you
are down
and spacey you're know good to them. So take a day off and be your
self. I
know thats not easy if you don't have anyone to take care of the kids.
But
maybe there is an organization that can help with the babysitting.
I know
there are someout there because I worked for some. I just can't remember
them. While enough of my two cents. Take care all. See you Southener
soon.
Max or Maxine
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Date: Sat, 29 May 1999
09:54:18 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Prom pictures
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Beth, I would like to see Tims prom pictures too! I bet he was handsome.
What a way to go Tim. It's great that you're doing all the things
I dreamed
doing! Way to go Tim and to Beth and your hubby! Max
=========================================================================
Date: Sat, 29 May 1999
15:35:33 EDT
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From: Jenngram@AOL.COM
Subject: Re: Hi just This and that!
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I believe just about every area has respite care ...this may prove to
be
helpful if you have no one to babysit and need some time away. I know
Florida
has it, and Ohio as well. Although I haven't personally utilized it,
I have
heard wonderful things.
I am rather overprotective, and I doubt this is about the syndrome.
I
interview vets before I take my dog, so imagine how I am w/ Jordan.
Joe has
decided I need to return to work, so I get the socialization and self-esteem
that I apparently need. He seems to think I became a different (sometimes
not
so nice) person since being at home all the time. And Jordan needs
to get out
also, and if I don't work he won't ever escape my clutches. So I am
in the
process of looking for childcare....not an easy task, but so far all
the
places seem real nice. Next week I start my suprise drop-bys to check
them
all out.
Any help in this matter would be appreciated. Its turning out to be
much
harder to let him go than I thought, but I know how much fun he'll
have!!!
Happy Memorial Day
Jenn (Columbus, OH)
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Date: Sat, 29 May 1999
19:23:43 -0500
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From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: Re: Hi just This and that!
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Hello everybody!!!! It's been a long time that I don't give my two
cents, but I read every single e-mail that we receive. For those that
don't know me, my name is Claudia, I have a husband and 3 1/2 year
old
twin boys. They are Rafael and Felipe. We've been in this wonderful
listserv for 3 years. Felipe was born with Apert and he is a wonderful
and smart boy.
It was really hard for me
the first time when my kids started preschool
wich was last year. When I left them there and was on my way home,
I was
feeling empty and I felt like I had lost an arm or a leg or something
like that. I never left them with a babysitter or a friend or anybody
elses but me and my husband, that is why I may have felt like that.
The
first weeks I felt really bad and didn't know what to do without
thinking how they were doing there and so on.... BUT today things
are
different, now I know that the boys are doing great in preschool and
they just LOVE it!!!!! Today I fell more confident and I really
trust
those people that are working with Felipe. Once you know the place
that
you are going to leave your child and you trust the people that are
going to work with him, you will fell confident too. It is really good
for me now because I have time for myself. Even if it's not much, but
it
helps a lot when you have to go shopping or having a hair cut, etc.....
I also want to welcome the
new members. It is a very nice place
to be!!! You can make friends and know that you are NOT alone!!
Best wishes for those that
are going to have surgeries soon and a
speedy recovery for those that alredy had.
My thoughts and prayers
are always with you all!
Have a happy and safe holiday.
Claudia Ize. ( Tulsa, Oklahoma
)
=========================================================================
Date: Sat, 29 May 1999
21:22:45 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: prom
MIME-Version: 1.0
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boundary="----=_NextPart_000_0014_01BEAA19.6549EB00"
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i am still sitting here smiling about Tim going to the prom, I
just bet =
he looked so handsome and i am sure that Mom was just as proud as can
=
be!
I can only hope that when Nick reaches that age, he will be able to
go
too. And i just know that I would be at home being a proud
peacock.
Beth, to keep us all pacified, since we are probably all excited for
you =
and can't wait to see his picture, maybe you could send Don a copy
or =
scan it to him and have him put it in the Clubhouse. Just a thought.
Judy
jamerman@uti.com
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=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>i am still sitting here smiling
about =
Tim going to=20
the prom, I just bet he looked so handsome and i am sure
that Mom =
was just=20
as proud as can be!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I can only hope that when Nick
reaches =
that age, he=20
will be able to go</FONT></DIV>
<DIV><FONT face=3DArial size=3D2> too. And
i just know that I =
would be at=20
home being a proud peacock.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Beth, to keep us all pacified,
since we =
are=20
probably all excited for you and can't wait to see his picture, maybe
=
you could=20
send Don a copy or scan it to him and have him put it in the =
Clubhouse. =20
Just a thought.</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>
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Date: Sat, 29 May 1999
21:29:24 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: palate widener
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_001D_01BEAA1A.52EEB5C0"
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just to let you know, we have now started on Nick's orthodontal work!
=
he got his lower expansion yesterday and is quite proud of it.
It is =
his favorite color. Red! It is the removable kind and I
have to crank =
it just one time every three days.
He goes in June 22 to get impressions for the top. And will have
the =
upper widener installed shortly thereafter. The top will not
be =
removable.
Any, I mentioned to the dr. about what happened to Alex and I don't
=
think he is using the same kind.
jamerman@uti.com
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charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=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>just to let you know, we have
now =
started on Nick's=20
orthodontal work! he got his lower expansion yesterday
and =
is quite=20
proud of it. It is his favorite color. Red!
It is the=20
removable kind and I have to crank it just one time every three=20
days.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>He goes in June 22 to get impressions
=
for the=20
top. And will have the upper widener installed shortly =
thereafter. =20
The top will not be removable.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Any, I mentioned to the dr.
about what =
happened to=20
Alex and I don't think he is using the same kind.</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_01BEAA1A.52EEB5C0--
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Date: Sun, 30 May 1999
15:39:46 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: prom
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Would love to see those prom photos too - maybe they'd better go on the web page!
When Amy was in hospital for her long stretch with the first hand op, one of the house surgeons had a sister with hand and foot differences. She still went dancing but wore sneakers under her floor-length dancing dress.
From memory she only had one finger on each hand, and her sister said she did some beautiful knitting.
If you want it badly enough, you'll make it happen.
Cheers
Ann
NZ
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Date: Sun, 30 May 1999
15:39:47 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Changing Faces
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In case you don't know, Changing Faces in the UK has a range of publications available which could be of interest to some families . I have listed some below as a guide (though I have a personal dislike of the term "disfigurement")
For a full list you can contact them at:
Changing Faces
1 & 2 Junction Mews
London W2 IPN
England
Tel: 0171-706-4232
Fax: 0171-706-4234
email: info@faces.demon.co.uk
website: http://www.changingfaces.co.uk
General Guides:
Facial Disfigurement - the full picture: a comprehensive guide to facial
disfigurement
The Psychology of Facial Disfigurement: a guide for health professionals
Practical Skills
Meeting New People, Making New Friends: a step-by-step guide for people
with a facial disfigurement
Making Your Face Work For You: managing disfigurement in the
workplace
Talking to Health Professionals About Disfigurement: a step-by-step
guide for people with a facial disfigurement
Everybody's Staring At Me! How to communicate when you have an unusual
face
My Child Looks Different: a guide for parents
Exploring Faces Through Fiction: using stories to help your child talk
about their face
Various booklets for those affected by burns, cancer, or eye differences
A range of booklets for young people
Videos
Publications for Employers
etc, etc,
=========================================================================
Date: Sat, 29 May 1999
23:59:02 EDT
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From: JobeCST@AOL.COM
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I have all that sinus stuff too! I went to the doc for a insect
bit and she
diden't care about it she was flipping out about my throat having blisters.
I guess i'm used to the stuff too. I will be praying that God
will send you
a friend to help you though these hard time's. But, you will
find the best
friend of all at church. Jesus! But he will meet you anywhere.
God bless you,
stacey
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Date: Sun, 30 May 1999
00:01:53 EDT
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From: JobeCST@AOL.COM
Subject: joanna
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i forgot to put your name on the e-mail i just sent
sorry
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Date: Sat, 29 May 1999
21:39:33 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Being overly protective.
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Jenn, I know how you feel about being overprotective. I have a normal
fiffthteen year old teenager and Iam still overly protective.She wants
to
drive and I don't want her to start driving until she's 25! So you're
not
the only one who's overly protective and my daughter is normal! When
she
first started preschool I cried all the way home because I was so scared
for
her. But I guess that it was me who was more scared than she was because
she
just loved it. I guess I would also say Iam overly protective because
I have
Aperts and my husband has cerebral palsy and I don't want my daughter
to get
hurt by other kids making fun of us, so alot of times my husband stays
home
when we are out shopping and we don't go to open house at my daughters
high
school. We did go to her open houses when she was in a Christian Grammer
School. And she didn't seem to mind that. Are there any kids Jordans
age
that he knows that are going to child-care? Maybe if he had a friend
that
was going he would want to go! or maybe you could go with him for awhile
until he gets use to the place and you can see how thing are run there.
I
would still do the surprise drop-bys. I hope everything turns out.
Take care
all.Maxine or Max which ever you want to call me.
=========================================================================
Date: Sun, 30 May 1999
06:45:37 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: WOW!!!
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Dear Friends,
Our only daughter was married last night and it was the most beautiful
wedding I have seen. Delaney was beautiful. Nothing went
wrong. Seth
was the ring bearer and proudly wore a tux. He was really pleased with
himself and wanted to be told over and over what a great job he did
(and
he did).
The reception was a "wild" celebration. Seth dance until 11:30
p.m. He
found a mentor on the dance floor and imitated the moves, including
the
Hustle. Not in my wildest imagination would I have believed that
things
could have gone so smoothly and we would have so much fun.
The most emotional moment came just before the wedding when a group
of
Ethen and Delaney's friends arrived. The group split and in the
middle
stood Winslow Chou, he had flown in from China the day before as a
surprise. I broke down and so did Delaney when she found out
that he
was there. He has been like a son to us since he was 12 and we
felt sad
that he would not be here to help us celebrate. Still, I can hardly
believe that he was able to make it.
In the past I have shared my sadness and my fears. Now, let me share
my
great joy.
Peace, Dori
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Date: Sun, 30 May 1999
10:35:14 EDT
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Acne (?) in the scalp
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Mallory's dermatologist told us to use SelsunBlue. It has an antibiotic
in
it. It does help a lot. She also is on E-mycin for acne on her face.
Hope
this helps.
Diane
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Date: Sun, 30 May 1999
19:23:02 EDT
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From: Marjorie Harmon
<MHTeach102@AOL.COM>
Subject: Howdy
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Howdy Folks,
First I want to say thank you for all the support I have
gotten, and
secondly to let everyone know that I found a set of pictures in some
boxes I
was sorting today so I will hopefully get some copies made this week
and get
them out in the mail. They are pictures from almost 2 years ago but
it will
show BJ in his better days. I also wanted to remind everyone to take
pictures
of your kids often. That is one thing I wish we had done more of.
I called MDA, Easter Seals and United Way and nobody wanted
BJ's medical
equipment, so I contacted Project Any Baby Can and they said they had
a
family put in a request just last week for equipment and they had to
turn
them down. So we spent the weekend getting everything ready and they
will
pick it up on Tuesday. So all in all guess it worked out.
Lots of Love
Marjorie
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Date: Sun, 30 May 1999
21:27:43 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Appointment
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I can't wait until Wednesday. I am due to go back to the doctor
to
follow up on my tests. Imagine that, I actually want to go to
the
doctor! Part of me is hoping she found something. Something that
would
explain the awful feeling I have and the constant desire to be asleep!
If all of this is a mental problem, I have a lot of work ahead of me.
Finding the right person to talk to and then digging in to find out
what
has me so bothered. I sure can't explain it. I will keep
you informed.
Thanks for your prayers.
Jenn - Welcome to Ohio. Sorry I'm not much of a welcoming committee.
Joanne
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Date: Sun, 30 May 1999
22:13:05 EDT
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From: ETolson643@AOL.COM
Subject: Re: prom
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Hello to all
I will try to send a picture of Tim...with his ok of course...I guess
I
should send it to Don so that he can scan it???? I am finishing
up the roll
now. I have always been pretty bad about developing film in a
timely manner,
but I will make an extra effort to get this one done!!
Beth Tolson
=========================================================================
Date: Sun, 30 May 1999
20:09:51 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: A LITTLE BIT OF EVERYTHING
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Hi all,
I was just wondering if anyone had heard from the people who were going
to adopt a little girl with Aperts. I believe her name was Laura. I
was
wondering if the adoption went through.
To the Tolsons: I was glad to hear that Tim got to go to the prom. I
am
17 and I think he is about my age. I recently went to Sadie Hawkins
where the girls ask the guys. I went with someone who I have known
since
preschool. We had been planning this for a year. It was one of the
best
nights of my life.
Welcome to all new members. I am Kelly Spadini. I am 17 years old and
almost a senior in high school. You can see my page on teeter's page.
Good luck to everyone having surgeries or recoveries. Andrea, I am eager
to hear how your surgery went since I will be having this soon.
Kelly in Hot California
=========================================================================
Date: Mon, 31 May 1999
20:02:42 +1200
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safe haven for Apert Syndrome
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Acne (?) in the scalp
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Bob did you get a copy of the Clinics in Plastic Surgery issue on Apert Syndrome? Bernice Krafchik has a one page item there on "Acne in Apert Syndrome".
Back in 1991 her address for reprints was
Bernice Krafchik, MD
600 Sherbourne Street
Suite 216
Toronto M4X 1W4
Ontario Canada
Regards
Ann
NZ
=========================================================================
Date: Mon, 31 May 1999
20:13:12 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: WOW!!!
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What a wonderful experience that all must have been for you and your family, Dori. You have every right to be proud of them.
Congratulations to Delaney and her husband on their Special Day.
And please continue sharing your good times.
Hugs
Ann
NZ
=========================================================================
Date: Mon, 31 May 1999
07:16:43 -0500
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Sender: Information exchange and
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: prom
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Beth,
It would be wonderful to see a picture of Tim now that he is almost
an
adult. The only picture I have of him is the adorable picture
of him in
Dr. Upton's book. So, my mental image of him is still of that
little
boy with his hands up.
Warmly, Dori
=========================================================================
Date: Mon, 31 May 1999
07:51:34 -0500
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Assistance Request
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Dear Ed,
Our second grade son was born with the most sever type of hand and has
very limited range. He has been using a standard key board and
mouse
for 18 months. He also uses a joy stick and steering wheel. He
is
amazingly fast while playing games of skill. He has a unique way of
using the key board but there are a lot of very fast two finger typist
in the world.
Sincerely, Dori
=========================================================================
Date: Mon, 31 May 1999
11:32:01 EDT
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safe haven for Apert Syndrome
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Sender: Information exchange and
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Assistance Request
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HI DORA, JUST READ WHERE YOUR SON HAS THE WORSE TYPE OF HANDS I THINK
CARLEE
DOES TOO! I WOULD LIKE TO SEE A PICTURE OF HIS HANDS WOULD THAT BE
POSSIBLE?
HOW MANY SURGERIES HAS HE HAD ONTHE HANDS? MARILYN
=========================================================================
Date: Mon, 31 May 1999
17:36:47 -0400
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Sender: Information exchange and
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Photo exchange
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Hello everyone,
We are in the process of mailing out Nicole's pictures and we have a
question for the out of the country folks. We have a few in Australia
one in New Zealand and Brazil and a couple in Canada. Could you
guys
let us know how much postage we should use without us having to make
a
trip to the post office (busy and hectic lives). If not we'll
just make
that post office trip, hopefully next weekend....thanks for your help..
Raquel Miller...
=========================================================================
Date: Mon, 31 May 1999
23:30:47 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
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Liz~
Our condolences are with you, and your family.
Congratulations~
Dori on Delaney's wedding! I bet Seth was
a charmer!
To Tim, for having the courage to go to the prom!
I missed mine due
to the lack of self-esteem. I am proud of you for holding your
head
high! :) If I only knew then, what I know now!
I was able to give blood, on Friday! I cried, I was sooo happy!
The
blood techs thought they were hurting me! I told them of my previous
experience, then they understood! I also learned that if a donor
(that
walks in off the street) does something the night before giving
blood,
and contracts HIV, it can't be detected for ten days. Thus, can
cause
the patient to receive the HIV infection. I think we will donate
every
surgery to be on the safe side! :+) We get our stitches out this
Thursday! Her first birthday! Speaking of birthday.........
HAPPY BIRTHDAY TO.....
MAXINE & CARLEE!!!!!
:)
3RD 4TH
Mechelle, Mother of Courtney ( and Chelsea)