Welcome to the Fullmers and congratulations on the twins. This
listserv is
the most wonderful thing to find. My family looks forward
to getting to
know your family and hear all about Clarice. (great name)
My daughter Samantha was born 7 1/2 months ago with Aperts, that includes
a
cleft palate. She just had her first surgery on the posterior
part of her
skull, she will have her index and middle fingers separated from each
other
on August 5th.
And she's doing great and life is good for all of us. Seven months
ago I
wasn't sure I would be saying that. She is our special gift.
Love, Lisa Guyette
=========================================================================
Date: Thu, 1 Jul 1999
03:42:27 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
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We live in California. Our name is the Guyettes (Lisa and Richard)
we have a
daughter named Samantha with Aperts. She was born ll/ll/98. My
husband also
has two teenage sons. We live in Ventura California about 60
minutes from
Los Angeles and 30 from Santa Barbara.
Lisa Guyette
=========================================================================
Date: Thu, 1 Jul 1999
13:54:36 EDT
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From: Firefli007@AOL.COM
Subject: Re: pics
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Hello evrybody
Jenny form Georgia here... did you guys see the Savannah flood of 99
on the
National news... it has been scary but now thank God the waters have
receeded...just cleaning up now... i was OK.. no harm no foul... just
WET!!
Judy here is my address:
Jenny Brown
230 East 52nd Street
Savannah, Georgia 31405
I have been remiss in not adding my name to the photo exchange...
will try
to get my photos out Some time!!!... I too have some copies of the
Myrtle
Beach Reunion...
Everybody here has been so impressed with our Apert's family...
I hope that CeCe my friend will be coming down this weekend to see
me and
bring her pics of the pizza party....will send them along too.
Welcome to all the new folks... I am Jenny...with Apert's ... 32 yrs
old..
Manager of a senior citizens high rise LOVe my job....almost thru with
grad
school Will get a master's degree in counseling in December...
and you all
are all invited to the GRADUATION party!!!!!! Single .. no kids...
have 170
senior citizens though (grin)
LOVED Myrtle Beach... the reunion changed my life forever..oh
sing and play
trumpet with a choir at church...well that's it for now..
Jenny (still kinda damp) in Georgia
=========================================================================
Date: Thu, 1 Jul 1999
16:56:13 EDT
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From: Andrea Gartner
<POOHagm@AOL.COM>
Subject: ANDREA'S NEW E-MAIL ADDRESS
MIME-Version: 1.0
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Hi everyone,
I am just letting you know that my new e-mail address is poohagm@aol.com.
Don, I had trouble removing my other e-mail address, (agartner@peganet.com)
from the listserv. Can you do that for me. Thanks.
Hope everyone is doing well,
Andrea
=========================================================================
Date: Thu, 1 Jul 1999
21:49:59 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Welcome!
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DEAR LISA, SO GLAD THE BABY IS DOING GREAT AND IT SOUNDS LIKE MOM AND
FAMILY
ARE DOING GOOD TOO! THAT'S IS SO GOOD. LIKE TO HEAR A UP BEAT NOTE
FROM
EVERYONE ONCE IN a while. LOVE MARILYN
=========================================================================
Date: Thu, 1 Jul 1999
22:00:08 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: pics
MIME-Version: 1.0
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DEAR JENNY SO GLAD ALL YOU GOT WAS A LITTLE WET HOPE YOU DIDN'T HAVE
ANY
DAMAGE TO YOOU STULL. GLAD YOU HAD A GOOD TIME IN MYRTLE BCH. WISH
I COULD OF
SPENT MORE TIME WITH YOU AND EVERY ONE MAYBE NEXT TIME . TAKE CARE.
MARILYN
(CARLEE'S GRANDMOTHER.)
=========================================================================
Date: Fri, 2 Jul 1999
12:02:39 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: (no subject)
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Hi all
I've just found out how to down load some pictures, lovely pictures
of lisa
and martha and eddie. Iam trying to learn how to scan our picture and
to send
them out, i'll send some pics when i finally manage to do it.
We've just had Richard assesed in school, he's coming along quite well.
But
the school thinks he might do better as he gets older if he uses a
lap top
computor for some school work. With the difficulty of holding pens,
he
presses quite hard on the paper and gets tired quickly, and is having
problems keeping up with the other children, when they have exams etc.
How do the older children cope , it would be nice to hear from
you.
Hope everyones well ,
Bye for now ,
Sandra , Andrew, Richard (with aperts) Matthew +David ( From the UK)
=========================================================================
Date: Fri, 2 Jul 1999
12:31:49 EDT
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From: Andrea Gartner
<POOHagm@AOL.COM>
Subject: Re: (no subject)
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I use the Brother Word Processor that looks like a lap top (but doesn't
cost
like one).
when I take notes in class. (college) It really helps.
Sometimes when
writing, I couildn't keep up, or I'd write something I didn't understand.
so, to me, using a lap top helps a great deal.
The Brother Word Processor is not as powerful as a laptop. It
comes with a
word processing program. It costs about $500-600, depending on
if you want
color or black and white. I bought it at Office Depot.
I'm glad to hear Richard is doing quite well in school. YOU GO
BOY! I hope
everyone does well in school this year.
Andrea
=========================================================================
Date: Fri, 2 Jul 1999
15:36:30 EDT
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From: Copperhd87@AOL.COM
Subject: Great news from the neurologist
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We had our first neurology appointment for Mitchell today and it couldn't
have gone better if I had written the script myself. YEA!!!
The neurologist said that the spot on Mitchell's MRI was probably and
old
small bleed or stroke, probably caused by blood pressure fluctuations
he
experienced during one of his cranial surgeries. He said it looked
like a
vascular hemorrage that had clotted off. He said he was almost
positive that
it was not a tumor or congenital malformation. YEA!! He
said that children
with strokes in this area generally do very well and it was very unlikely
that it would happen again. He believes it is stable and will
not change and
cause any problems in the future. YEA!!
Anyway, we are just as pleased as punch! This was the neurologist
that is
the least in demand in the Oklahoma City area, so I hope he's reliable.
We
already have a second, third and fourth opinion scheduled. I
know we'll keep
the second in two weeks because we have an MRI scheduled to go with
it.
Hopefully, that neurologist will give us just as good a prognosis as
this one.
Thank you for all your support during this difficult waiting time.
I hope
you all have a great doctor's appointment like this one very soon.
All our best,
Resa, Mark and Mitchell
=========================================================================
Date: Fri, 2 Jul 1999
15:47:00 EDT
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From: Copperhd87@AOL.COM
Subject: Fortune cookie collection for
special needs children
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I wanted to share this idea with all the moms because it really has
helped me
to keep a positive attitude.
Not long ago, I started a Chinese fortune cookie collection for Mitchell.
I
save great fortunes and put them on his bedroom mirror with clear tape.
It started with this great fortune I felt was so appropriate for Mitchell's
life journey:
"Don't let doubt and suspicion cloud your progress."
Now isn't that just perfect for our kids that have so much worry heaped
upon
them and yet they just keep plugging away, always looking forward.
I just
love it.
The next fortune was
"One day you will become rich and famous."
Good for anyone.
Our latest is
"You will enjoy good health and financial independence."
Aren't these just fabulous fortunes for our kids? I know, I know,
our family
eats in Chinese restaurants too often if we found three such great
fortunes.
True, they are just slips of paper in a cookie, but they have given
me great
hope. Try it! You're even welcome to borrow ours.
Think of them as a
present from Mitch.
Have a great day,
Resa
=========================================================================
Date: Fri, 2 Jul 1999
21:11:46 +0100
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From: Steve Stewart
<steve@FSTEWART16.FREESERVE.CO.UK>
Subject: Re: (no subject)
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Hi Sandra
My name is Karen and I have a son called Ryan who is 6 with Apert syndrome.
He too has recently had a computer assessment because he cannot keep
up with
writing at the same speed as some children. He has been recommended
a
Infrared Alphasmart 2000 with infrared receiving pod. I went
to see this
equipment yesterday and it is like a notepad. It is light weight,
has a
keyboard with large keys and is a very basic wordprocessor with a small
liquid crystal display that shows 4 lines of text. It holds 8
files of
various size, in all 64 pages of A4 and with the infrared you just
have to
point at a PC with infrared connector to down load files. Hence no
wires or
plugs to worry about. It looked very appropriate for his needs
and costs
£279 from TAG developments.
I hope this info is useful please let me know if you hear of anything
better. We live near London by the way.
----- Original Message -----
From: Sandra Jones <AJones7692@AOL.COM>
To: <APERT@LISTSERV.AOL.COM>
Sent: Friday, July 02, 1999 5:02 PM
Subject: (no subject)
> Hi all
>
>
> I've just found out how to down load some pictures, lovely pictures
of
lisa
> and martha and eddie. Iam trying to learn how to scan our picture
and to
send
> them out, i'll send some pics when i finally manage to do it.
>
> We've just had Richard assesed in school, he's coming along quite
well.
But
> the school thinks he might do better as he gets older if he uses
a lap top
> computor for some school work. With the difficulty of holding pens,
he
> presses quite hard on the paper and gets tired quickly, and is having
> problems keeping up with the other children, when they have exams
etc.
>
> How do the older children cope , it would be nice to hear from
you.
> Hope everyones well ,
>
> Bye for now ,
>
> Sandra , Andrew, Richard (with aperts) Matthew +David ( From the
UK)
>
=========================================================================
Date: Fri, 2 Jul 1999
16:29:47 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Great news from the neurologist
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Resa--
So glad to here it was good news. Keep us posted.
Brenda
=========================================================================
Date: Fri, 2 Jul 1999
16:39:26 EDT
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From: Sandra Jones
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Hi Karen,
Thanls for replying to my message, you are the first person in England
to
contact me, i will pass the info om to the school , they are going
to chase
up the local education deptment to if they will supply him with
somthing ,
if not we will hopefuly buy him one..
How do you find the information and help that you get from the doctors
in
the Uk. We go to Great Ormound Street Hospital for treatment
, how about you?
Have you any other children ,we have 3 all together , all boys 8/10/12
Richard is 10yrs(who has Aperts)
If you like you can E mail us at Ajones 7692@aol.com.
Bye for now .
Sandra +family
=========================================================================
Date: Fri, 2 Jul 1999
16:49:40 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: Re: (no subject)
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Hi Andrea
Thanks for replying,
I'll have al look into getting Richard a word processer
, the lap tops over
here a very exspensive to buy, a word processer would be a better idea.
Thanks.
What are you studying in collage, i look forward to all my boys getting
to
collage.
Richard very good at his school work, the school he goes to now is
very good.
He has the big job , of going to (I think you call it high school?)
next
year when he is 11yrs.
That will be a great change for him, the school he goes to now has
only 75
pupils the big school will have 350pupils .
Fingers cross he will enjoy it.
Bye for now
Sandra =Family
=========================================================================
Date: Fri, 2 Jul 1999
15:53:13 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Fw: Hi Everybody!
just this and that!
MIME-Version: 1.0
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-----Original Message-----
From: rreed <rreed@cableone.net>
To: Aperts <APERT@LISTSERV.AOL.COM>
Date: Friday, July 02, 1999 1:08 PM
Subject: Hi Everybody! just this and that!
>Hi all Max here, I thought that since it's hot here in Calif. I would
write!
>
> Sandra, I would go with Andrea's suggestion with the
word prosseor. I
>know that I wish I had one when I was in high school because I had
a hard
>time like your son Richard keeping up with writting notes. I used
a tape
>recorder but even then I had a hard time writting things down, and
would
>take me all night just doing one subject. So I would go with the word
>prosseor.
>
> Hi Jenny Iam glad to hear that you are high and
dry. Hope that you are
>getting things back in order. Can't wait to see you next year at Mrytle
>Beach I had a blast talking to you and meeting your friends.
>
> Hi Bill Wethrow, I tried writting to you but, Got both of my
letters
back.
>I hope all is well with you all. Iam glad you found this listsever.
It's
>been a great place for me and I enjoyed meeting alot of neat people
in
>Myrtle beach. I hope we can have a get togather soon here in Calif.
I would
>come too, I would like to see you all. I bet Alison is getting big!
Tell
>Nancy I said Hi.
>
>Hi Resa, Iam glad to hear that Mitchell's MRI turned out to be A O.K.
I
always said we Aperts were a tuff group and that we can go through
anything
and I also like your fortune cookie idea, I'll try it on my family.
I hope
the rich and famous one comes true for me. I don't want to be famous
but I
want to rich!
I hope this finds you all high and dry, I hear the southen states
are wet
too! Take Care everybody. If my letter looks a little funny it's because
I
had stopped for awhile and but in the out box then I had to re forward
it so
I can finish it. Like Sandra I am still learning how to do some things
on
the computer. Bye Bye for now! Max
Oh Hi to all the new familys Iam Maxine Reed. I have Aperts and Iam
45 years
old. You can read more about me at Teeter's page. Bye again Max
=========================================================================
Date: Fri, 2 Jul 1999
21:47:24 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: (no subject)
MIME-Version: 1.0
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> Hi all,
To answer your question about how older children cope with taking notes
in school and keeping up with other people. I have had no problem
keeping up with my classmates. The only delay would be that I could
not
hear the teacher or I could not see. I do not get any special priveleges
just because I have aperts syndrome. I do the best I can. My teachers
are always willing to repeat anything that was missed, not just to
me,
to anyone in the class. I like it that way.
Hope this helped.
Kelly SpadiniSandra Jones wrote:
> Hi all
>
> I've just found out how to down load some pictures, lovely pictures
of
> lisa
> and martha and eddie. Iam trying to learn how to scan our picture
and
> to send
> them out, i'll send some pics when i finally manage to do it.
>
> We've just had Richard assesed in school, he's coming along quite
> well. But
> the school thinks he might do better as he gets older if he uses
a lap
> top
> computor for some school work. With the difficulty of holding pens,
he
>
> presses quite hard on the paper and gets tired quickly, and is having
> problems keeping up with the other children, when they have exams
etc.
>
> How do the older children cope , it would be nice to hear from
you.
> Hope everyones well ,
>
> Bye for now ,
>
> Sandra , Andrew, Richard (with aperts) Matthew +David ( From the
UK)
>
=========================================================================
Date: Sat, 3 Jul 1999
15:52:24 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Picture
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0006_01BEC56C.0B1332E0"
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charset="iso-8859-1"
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Judy,
Thanks for sending Nick's pictures. I really like them.
His fingers =
look just like Lisa's. Can they separate the ring and middle
fingers? =
In Lisa's case they told us they could not. They said that if
they =
separated them that she would not have use of either one. She
has =
learned to adapt to the way they are.
Lisa will be 10 on 7/29 and is also going into the 4th grade.
Is he =
mainstream or special ed? Lisa is basically Special Ed all the
way. =
How do the other kids treat him? Do they accept him for who he
is? =
Hope so. Nick is a cute kid.
I am finally getting a few pictures. Keep them coming folks.
I have =
sent out a quite a few but only got about 20 back.
Thanks for the picture Nick. Looks like your doing good.
Randy, Deb & Lisa Picht=20
rldpicht@starpoint.net
------=_NextPart_000_0006_01BEC56C.0B1332E0
Content-Type: text/html;
charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Judy,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks for sending Nick's
=
pictures. I=20
really like them. His fingers look just like Lisa's.
Can =
they=20
separate the ring and middle fingers? In Lisa's case they
told us =
they=20
could not. They said that if they separated them that she
would =
not have=20
use of either one. She has learned to adapt to the way they=20
are.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Lisa will be 10 on 7/29 and is also going
into the =
4th=20
grade. Is he mainstream or special ed? Lisa is
basically =
Special Ed=20
all the way. How do the other kids treat him? Do
they accept =
him for=20
who he is? Hope so. Nick is a cute kid.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I am finally getting a few pictures.
Keep them =
coming=20
folks. I have sent out a quite a few but only got
about 20=20
back.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Thanks for the picture Nick. Looks
like your =
doing=20
good.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Randy, Deb & Lisa Picht </FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:rldpicht@starpoint.net">rldpicht@starpoint.net</A></FONT><=
/DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0006_01BEC56C.0B1332E0--
=========================================================================
Date: Sat, 3 Jul 1999
17:49:27 -0500
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From: "Wendy S. Pak"
<Wendy_S._Pak@RIDLEY.ON.CA>
Subject: Niagara Falls get together
MIME-Version: 1.0
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Hello all! I just want to take a poll of anyone who would like
to have a
get together in the Niagara Falls area any time during the week of
August
13-22, 1999. It can be a weekend or during the week, whatever
is best
for most families. We are particularly interested in familes with children
born in the early 90's or adults or teens with Aperts born in the 70's
or
early 80's. Any young families wishing to see how Apert kids
are like as
adults are also welcome.
Please send a private e-mail to wendy_pak@ridley.on.ca as to whether
you
are interested in attending and what dates are best for your family.
I
will then tabulate everything and let families know what the concensus
has
been.
Also, I don't know if this has been done, but I would like to see a
database of everyone that has become part of this Apert family.
I would
like to have everyone's address, child's name who has Apert and his/her
birthdate, e-mail address etc. All the pertinent details to contact
people within an age group or a particular area of the World!
I'm sure
there are small lists here and there with the photo exchange etc.,
but if
we could have one place or a web site that will link to the database,
that
would be great. Amongst the million things I have to do, I would
be
willing to put this together. It can be part of my learning to
use the
web features of Filemaker Pro which would be the database I would use
since I teach Filemaker in my senior classes. I would set up
a database
similar to what's already on the apert web page, but with all the details
necessary to contact people and with full birthdates. Don - has
this been
done by anyone? If not, people can send me their updated information
and
I will put together a database that can be published to the web site.
I
can take some of the information that is already on the web site, but
if
there is updated information needed, people can send this along.
Wendy Pak
=========================================================================
Date: Sun, 4 Jul 1999
09:33:10 -0300
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From: Uwe Heinz Schmidt
<heinz@NTS.COM.BR>
Subject: Re: hi all
MIME-Version: 1.0
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Maeghuli Ahmad escreveu:
> my name is Ahmad Maeghuli/23/IRAN
> i'm a new member of APERT discusion list and very happy for join
the list
> if anybody knows IRAN or can speak FARSI , mail a persian mail me.
> Thanks.
Ahmad how old are you, and have you Apert?
=========================================================================
Date: Sun, 4 Jul 1999
09:33:41 -0300
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From: Uwe Heinz Schmidt
<heinz@NTS.COM.BR>
Subject: Re: hi all
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Maeghuli Ahmad escreveu:
> my name is Ahmad Maeghuli/23/IRAN
> i'm a new member of APERT discusion list and very happy for join
the list
> if anybody knows IRAN or can speak FARSI , mail a persian mail me.
> Thanks.
=========================================================================
Date: Sun, 4 Jul 1999
11:40:35 EDT
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From: Yonstein@AOL.COM
Subject: Re: Great news from the neurologist
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Resa:
I am so happy to hear the great news about Mitchell. I've been
thinking
about you guys often and praying for good news. Hopefully the
second opinion
is just as good.
Best wishes,
Janine
=========================================================================
Date: Mon, 5 Jul 1999
10:04:47 +0200
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From: Sumaya Jhetam
<sumayaj@TRUSTCELL.CO.ZA>
Subject: Hi there!!!
MIME-Version: 1.0
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Hello everybody,
I'm Sumaya from South Africa. I have a neice Maryam with Aperts,
she'll be 3 tomorrow. When Maryam was born it was a real shock
to us,
it was the first time we had seen a baby like this. She had an
enlarged
head, fused fingers & webbed feet. I must admit, it
took us a little
time to get over the shock, but I doubt we will come across a child
who
is as wonderful & as beautiful as she is. We believe that
she a gift, a
gift given that is only given to "special" people. I love her,
I love
her to bits!
Maryam's fontanelles were fused & so she had an operation when she
was 8
months old to have them separated so that there would be enough room
for
the brain to grow. The operation was a success.
Her hands, the doctors say, are fused very badly, so all they can
separate are both the thumbs & the little fingers. But, I
guess
something is better than nothing! Both her thumbs have already
been
separated. It's really suprising to see how much she can do with
them.
Her op to sepaparate her little fingers will be done in August.
Let's
just pray it is a success.
Maryam's speaks, but not full sentences & her pronunciation is not
that
clear. She is going for speech theraphy.
I want to thank Don Sears for setting up this wonderful Listserv 'cause
how much I've learned from it is really amazing & I also would
like to
thank each one of you for taking the time to read about my wonderful
neice.
Thankyou...
Sumaya Jhetam.
=========================================================================
Date: Mon, 5 Jul 1999
06:57:18 EDT
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Subject: Re: Hi there!!!
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Maryam:
Welcome to the "family". I have a daughter, 6 yrs., who was born
with Apert.
I used to get a very sad feeling when hearing of an Apert birth.
Now, I
feel joy and like celebrating, because I know the work Apert kids do.
They
awaken such wonderful feelings in the lives of those they touch.
They spread
love everywhere they go. They make people pray, sometimes people
who have
never prayed before. They cause strangers to develop deep meaningful
relationships. They bring people together. They show a
human strength that
we didn't know was possible. In a nut shell, they do God's work
before they
even know who He is.
Much love and God bless,
Alice in Orlando, FL.
=========================================================================
Date: Mon, 5 Jul 1999
07:10:07 EDT
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Sumaya:
I forgot to mention that you may want to encourage your niece's mother
and
father to get a second opinion, if possible, on your niece's hands.
I have
never heard of the fingers being so fully fused that the doctors could
not,
at least, get 3 fingers out of the 4, in addition to the thumb.
Although,
she will be just fine no matter how many fingers she ends up with.
I
believe, Max, one of our adult Apert "heroes" never did get her fingers
separated. Is that true, Max or am I telling a story?
Love,
Alice in Orlando, FL.
=========================================================================
Date: Mon, 5 Jul 1999
09:50:13 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Hi there!!!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Alice what a beautiful way to say this. Thank
you. I have to include my
little girl among the children you describe, too.
Welcome Sumaya and Maryam!
Pat (mom to the Peach)
>Welcome to the "family". I have a daughter, 6 yrs., who was born
with Apert.
> I used to get a very sad feeling when hearing of an Apert birth.
Now, I
>feel joy and like celebrating, because I know the work Apert kids
do. They
>awaken such wonderful feelings in the lives of those they touch.
They spread
>love everywhere they go. They make people pray, sometimes people
who have
>never prayed before. They cause strangers to develop deep meaningful
>relationships. They bring people together. They show a
human strength that
>we didn't know was possible. In a nut shell, they do God's work
before they
>even know who He is.
>
>Much love and God bless,
>Alice in Orlando, FL.
>
=========================================================================
Date: Mon, 5 Jul 1999
15:09:36 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: Fortune cookie collection
for special needs children
In-Reply-To: Copperhd87@AOL.COM's message of Fri, 2 Jul 1999
15:47:00 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
On one of our trips to the hospital, we ate at a Chinese restuarant.
We
let Courtney lick on a fortune cookie. Then we broke it open,
Her
fortune read:
Judge not by appearance.
Needless to say I cried, after I read it. It is in her baby book!
:) I
felt it was a message sent from above!
Mechelle
=========================================================================
Date: Mon, 5 Jul 1999
15:36:06 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: We are home!
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Welcome to the new family's! We are the Holt's. Tim, Mechelle,
Chelsea(5yrs) and Courtney (Apert, 13 months). Courtney just
had her
fifth surgery.
We had some problems with her bi-canthel advancement (cranial surgery).
We donated two pints of blood, and were told we should have only needed
one. When the bone (from the skull) was removed, a vain had grew
into
the bone, ths causing a nick in the vein, so she bleed a LOT.
Her blood
pressure dropped. After surgery, while in ICU she had to receive
more
blood, this time from the blood bank. They typed, and tested
it three
times, before giving it to her. What a basket case we were.
Surgery
lasted four hours, we didn't get to see her for almost eight.
We were
doubtful about getting to come home today, since she is able to peek
through her eyelids! She is still swollen. We were also
fitted for a
helmet, since she is mobile this surgery. Anyone else have to
wear a
helmet?
Thanks for listnening! :+)
Mechelle
=========================================================================
Date: Mon, 5 Jul 1999
13:15:40 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Welcome to the family!
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Hi Sumaya, and Welcome to the family! My name is Maxine Reed and
I am the
45 year old adult with Aperts that Alice spoke about. I only have the
thumb
and ring finger seprated. I probley could get the rest of my fingers
seprated but at my age and Iam so used to having then this way I don't
think
I want to change and I can do everything that normal people do like
cook,
play the piano,tie shoes,type on the computer, button buttons and anything
else that you can think of that normal people can do! Iam married and
have a
15 year old going on 20 normal healthy teenager who's going to drive
me
crazy!. You can read more about me in Teeter's page. I agree with Alice
on
getting a second opinion. I think all parents should get an second
opinion.
I know that if my parents had the chance when I was born they would
have,
but since it was 1954 when I was born, Aperts was fairly new and not
a whole
lot of people knew about it. Like your niece's parents and the rest
of the
family it was a real shock too to my family but I came from a loving
family
and like I've always said us Aperts kids and Adults are a strong force
to be
reconed with! My parents had no info about Aperts! If you and your
family
have any questions just E-mail me here or at: rreed@cableone.net I'll
be
happy to answer any questios that you have. We are a gift from God,
all kids
are, but we are just special ones that God hand picked to tell the
World
about differences in this world! I hope you'll find this listsever
a life
line, it sure
has helped me!
Alice thanks for the complement but I don't think Iam an "heroe" Everyone
on
this list are "heroes" Iam just sent here to help you all when
I can. I
feel God gave me life so I could help you all through these's difficult
times that you all might be going through.
Mechelle,Thats a great fortune for little Courtney to have.I just wish
the
whole world would get that messege: Judge not by appearance! It sure
would
be a better place to live. How did her surgery go! or did she
have it yet?
How's her ears doing?
Well I better go all. Take care all and again Welcome to all the
New
family's My friends here call me Max!
=========================================================================
Date: Mon, 5 Jul 1999
13:26:31 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Welcome home Courtney!
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Hi Mechelle, I guess I wrote to soon. Iam glad to hear Courtney
is home,
but Iam so sorry that you guys had to go through alot. I wish I could
have
been there for you! I know how loseing blood can be a real drag, I
lost alot
blood when I had my facial surgery too! I would hate any little one
have to
go through what I went through. I'll be praying for her and for you
and Tim.
Get some rest! I wish I was there to babysit for you Guys. Tell little
Courtney I said Hi. Take Care. Max
=========================================================================
Date: Mon, 5 Jul 1999
19:14:33 EDT
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Anyone from Colorado?
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April,
I have been wondering what could have caused the mutation which caused
my son
to have Aperts Syndrome as well. It does seem kind of strange
that there
would be so many birth defects in such a small area as yours.
Did your
pediatrician have any ideas? Any common factor, such as more
radiation
because of less atmosphere way up there??
I know you sent this a while ago, I've been so busy working full time,
I
haven't had time to do anything beyond working, eating, sleeping &
taking
care of Mason.
By the way, I don't know if I talked to you since we got back from Dallas,
but we did decide to go with Dr. Fearon. We really liked him.
He called us
himself the other day to see how Mason was doing!
We are going with Dr. Scott at Children's hospital here in Denver.
So, we're
all set. We're just waiting for Mason to be ready. His
head is still
growing & he still has a huge open spot on his head, so we're okay
for now.
He is progressing just like any other baby--he's almost 5 months old
now &
he's rolling over, babbling like crazy & holding his bottle when
he feels
like it (it's amazing how resourceful kids are--he uses his fingertips
to
hold the bottle & it works!). I took him swimming today &
he was kicking
like he knew what he was doing!!!!!
How is Saige doing? How old is she now? It's amazing how
time flies, isn't
it?
Hope your summer is going well...
Sincerely,
Karin Meadows-Pittman
=========================================================================
Date: Mon, 5 Jul 1999
19:26:49 EDT
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Insurance
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Sherry,
I have good insurance with a great company that I happen to work for--it's
Great-West Life. They provide mostly group health insurance.
I don't think
we sell any individual health insurance. We have a PPO.
It is more
expensive than the HMO, but well worth it. We can go to many
clinics &
hospitals across the country. Even if the doctor is not in the
ppo plan,
they still cover 70% and some doctors will write off the remaining
30%.
One more thing, it would be worth your while to check into Medicaid.
We have
been jumping through hoops since Mason was born (Feb '99) trying to
get this,
but we are very close now. We have been placed 4th on the waiting
list (90
kids on the list) and as soon as we get this for Mason, they
will cover
everything that my insurance will not. This is a great relief,
since we
already have medical bills piling up with the copays & deductibles.
We live
in Colorado. I don't know what state you live in, but they may
have
something similar.
We wish you all the best of luck in the search for insurance.
Sincerely,
Karin Meadows-Pittman, mom to Mason Pittman
=========================================================================
Date: Mon, 5 Jul 1999
21:17:48 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: We are home!
MIME-Version: 1.0
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Hi, Mechelle,
I'm glad to hear that you guys made it home and that Courtney is doing
better. Boy you guys must be exhausted. I can imagine how
you must have
been a total basket case, I know we would have. But thank God
Courtney made
it through and now it's nothing but getting better.
As far as the helmet goes, Nicole wore one for six months 23 hours a
day.
We think it really helped, she had no problems with it whatsoever but
it
helped mold her head after the surgery quite well. We were only
able to
take it off for bath time 1 hour a day that's all. But we stuck
by it and
did as we were told. Let me warn you it gets pretty smelly and
I mean
smelly. She will sweat a lot under the helmet, even though Nicole
wore it
during the fall and winter (not that we really have a fall and winter
here
in south Florida) but it's at least the coolest time of the year.
We were
only able to clean the inside of the helmet with a wash cloth and alcohol
no
soap no water. Stick to the treatment I think it will make a
difference..
Take care,
Raquel Miller...
Mechelle Holt wrote:
> We were also fitted for a
> helmet, since she is mobile this surgery. Anyone else have
to wear a
> helmet?
> Thanks for listnening! :+)
> Mechelle
=========================================================================
Date: Mon, 5 Jul 1999
21:25:14 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome Maryam & Sumaya
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Hi Sumaya welcome to our family,
My name is Raquel Miller my husbands name is Jack and we have four
wonderful children Michelle 15, Steven 11, Erica 5 and Nicole 21 months
with Aperts.
This is a wonderful listserv we are all here to help each other, ask
any
question and someone will answer or maybe some ones, a lot of us have
been there done that. I also agree that Maryam's parents
should get a
second opinion on her hands it sure won't hurt to try. Any way
welcome
we are glad you are here.
Raquel Miller from Sunny Florida USA
=========================================================================
Date: Mon, 5 Jul 1999
22:08:31 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Insurance
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Karin,
Thanks for your input into the insurance issue. We've pretty much decided
to go
with a ppo or similar plan as soon as possible, which would be next
Jan. Until
then, we'll continue to fight with our HMO to get the care Kieran needs.
We do have a state program similar to Medicaid here that we're enrolled
in. It's
called Children's Special Health Care, and it's a medical need based,
not income
based, program. Depending on your income, you may have a co-pay.
However, the
great thing about it is that if you don't use the insurance in the
amount of the
co-pay, the refund the balance; if you use more, no problem.
The bad thing about
it is that they make you go through your regular insurance first.
I'm going to
do some more checking into that this week.
Thanks,
Sherry Roehl - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Karin Pittman wrote:
> Sherry,
> I have good insurance with a great company that I happen to work
for--it's
> Great-West Life. They provide mostly group health insurance.
I don't think
> we sell any individual health insurance. We have a PPO.
It is more
> expensive than the HMO, but well worth it. We can go to many
clinics &
> hospitals across the country. Even if the doctor is not in
the ppo plan,
> they still cover 70% and some doctors will write off the remaining
30%.
>
> One more thing, it would be worth your while to check into Medicaid.
We have
> been jumping through hoops since Mason was born (Feb '99) trying
to get this,
> but we are very close now. We have been placed 4th on the waiting
list (90
> kids on the list) and as soon as we get this for Mason, they
will cover
> everything that my insurance will not. This is a great relief,
since we
> already have medical bills piling up with the copays & deductibles.
We live
> in Colorado. I don't know what state you live in, but they
may have
> something similar.
>
> We wish you all the best of luck in the search for insurance.
>
> Sincerely,
> Karin Meadows-Pittman, mom to Mason Pittman
=========================================================================
Date: Mon, 5 Jul 1999
22:34:40 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Welcome Sumaya
MIME-Version: 1.0
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Welcome to the Apert "family." I hope you find this list serve
as helpful
as we have. We're the Roehls- Sherry, Greg, Bailey (7), Laney
(4) and
Kieran (3 months w/Apert's). Like your family, we had never heard
of
Apert's before Kieran's birth, but the people hear have been wonderful
in
answering any questions we've had. Thank you all!
It's wonderful to hear that your niece has a loving, supportive family.
I
absolutely agree with getting more opinions about her hands.
We actually
canceled a surgery Kieran was to have on his skull last week after
getting
2nd, 3rd and 4th opinions! The more information you get, the
better able
you are to make these difficult decisions.
Again, welcome.
Sherry Roehl
Sumaya Jhetam wrote:
> Hello everybody,
>
> I'm Sumaya from South Africa. I have a neice Maryam with Aperts,
> she'll be 3 tomorrow. When Maryam was born it was a real shock
to us,
> it was the first time we had seen a baby like this. She had
an enlarged
> head, fused fingers & webbed feet. I must admit,
it took us a little
> time to get over the shock, but I doubt we will come across a child
who
> is as wonderful & as beautiful as she is. We believe that
she a gift, a
> gift given that is only given to "special" people. I love her,
I love
> her to bits!
>
> Maryam's fontanelles were fused & so she had an operation when
she was 8
> months old to have them separated so that there would be enough room
for
> the brain to grow. The operation was a success.
>
> Her hands, the doctors say, are fused very badly, so all they can
> separate are both the thumbs & the little fingers. But,
I guess
> something is better than nothing! Both her thumbs have already
been
> separated. It's really suprising to see how much she can do
with them.
> Her op to sepaparate her little fingers will be done in August.
Let's
> just pray it is a success.
>
> Maryam's speaks, but not full sentences & her pronunciation is
not that
> clear. She is going for speech theraphy.
>
> I want to thank Don Sears for setting up this wonderful Listserv
'cause
> how much I've learned from it is really amazing & I also would
like to
> thank each one of you for taking the time to read about my wonderful
> neice.
>
> Thankyou...
> Sumaya Jhetam.
=========================================================================
Date: Mon, 5 Jul 1999
22:37:46 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: We are home!
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Mechelle,
Welcome home! I'm sorry to hear about the difficulties you endured
during
Courtney's surgery. Kieran hasn't had any surgeries yet, but
one day we'll
be in your shoes. I hope we have a happy ending, as you have.
Sherry Roehl- mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Mechelle Holt wrote:
> Welcome to the new family's! We are the Holt's. Tim, Mechelle,
> Chelsea(5yrs) and Courtney (Apert, 13 months). Courtney just
had her
> fifth surgery.
> We had some problems with her bi-canthel advancement (cranial surgery).
> We donated two pints of blood, and were told we should have only
needed
> one. When the bone (from the skull) was removed, a vain had
grew into
> the bone, ths causing a nick in the vein, so she bleed a LOT.
Her blood
> pressure dropped. After surgery, while in ICU she had to receive
more
> blood, this time from the blood bank. They typed, and tested
it three
> times, before giving it to her. What a basket case we were.
Surgery
> lasted four hours, we didn't get to see her for almost eight.
We were
> doubtful about getting to come home today, since she is able to peek
> through her eyelids! She is still swollen. We were also
fitted for a
> helmet, since she is mobile this surgery. Anyone else have
to wear a
> helmet?
> Thanks for listnening! :+)
> Mechelle
=========================================================================
Date: Tue, 6 Jul 1999
12:00:02 EDT
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From: Yonstein@AOL.COM
Subject: Re: We are home!
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Mechelle:
Glad to hear that Courtney is home and recovering. Hopefully it
will be a
smooth recovery. Can't help on the helmet question, though.
Best wishes,
Janine Krebs
=========================================================================
Date: Tue, 6 Jul 1999
12:06:23 EDT
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From: Yonstein@AOL.COM
Subject: Re: Welcome Maryam & Sumaya
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Welcome from the Krebs family: Brian, Janine, Nicholas and Emily, 2
years old
this month with Apert. I am sure you will find this listserve
as helpful and
informative for your neice and family as we have. It's a great
bunch of
loving and caring people, filled with knowledge and information.
Your neice is lucky to have a great family. I, too, took a long
time when
Emily was born to accept, but I wouldn't change her one bit.
She is the best
thing to have happened to our family.
Best wishes,
Janine Krebs
(NY)
=========================================================================
Date: Tue, 6 Jul 1999
09:13:05 -0700
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From: Christina Stile
<cmstile@YAHOO.COM>
Subject: Yahoo! Vacation Reply
MIME-Version: 1.0
Content-Type: text
i will be out of the office on tuesday, july 6, 1999.
when i return on wednesday, july 7, i will respond to your message.
thanks--christina
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_________________________________________________________
DO YOU YAHOO!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Tue, 6 Jul 1999
12:16:41 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Niagara Falls get together
MIME-Version: 1.0
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Hi Wendy,
This has intentionally not been done because we're very aware of privacy
issues. Generally, it is not a great idea to tabulate and post
personal
information on the web. There are people out there who, unfortunately,
would try to use this information in a number of unsavory ways.
They
often use automated programs (robots or 'bots') to cruise web page
after
web page looking for information that they can collect and then sell
or
otherwise misuse.
The information that has been posted on Teeter's Page and the personal
pages is not easy for someone to get because it is not in an orderly,
database-style format. Each individual family has decided what
to put
or not put on their own web page.
As far as I am concerned , you are anyone else is welcome to collect,
on
a voluntary basis, any information that the families are willing to
give. The picture exchange information is temporary in nature
and will
be deleted as soon as the picture exchange is complete. Additionally,
you have to know the web address in order to access the information.
That's why there is no link from Teeter's Page.
Each reader of this listserv signed on with the belief that their
personal information would be protected. That's a promise that
I will
always keep.
I can look into setting up a secured, password protected area on our
server that would allow users to update their own information.
I'd like
to hear what the rest of you think about this issue. If I'm way
off
base, I'll be glad to help put the information together.
>Also, I don't know if this has been done, but I would like to see a
>database of everyone that has become part of this Apert family.
I
would
>like to have everyone's address, child's name who has Apert and his/her
>birthdate, e-mail address etc. All the pertinent details to
contact
>people within an age group or a particular area of the World!
I'm
sure
>there are small lists here and there with the photo exchange etc.,
but
if
>we could have one place or a web site that will link to the database,
that
>would be great. Amongst the million things I have to do, I would
be
>willing to put this together. It can be part of my learning
to use the
>web features of Filemaker Pro which would be the database I would
use
>since I teach Filemaker in my senior classes. I would set up
a
database
>similar to what's already on the apert web page, but with all the
details
>necessary to contact people and with full birthdates. Don -
has this
been
>done by anyone? If not, people can send me their updated information
and
>I will put together a database that can be published to the web site.
I
>can take some of the information that is already on the web site,
but
if
>there is updated information needed, people can send this along.
>
>Wendy Pak
=========================================================================
Date: Tue, 6 Jul 1999
14:54:43 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: other reunion locations
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Just a quick comment on NIagara Falls. They are beautiful. I went there
when
I was a teenager to visit a friend. But as far as a vacation with children
this is not a good place. I personally thought the Beach was a great
place.
Because there aren't many kids that don't love the water. Just my 2
cents
worth.
Cristy and Carlee
in Florida
=========================================================================
Date: Tue, 6 Jul 1999
14:56:22 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: pics
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Judy,
Hello there just wanted to let you know we got the pics. Thanks, they
were
great.
Cristy and Carlee
=========================================================================
Date: Tue, 6 Jul 1999
16:05:11 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: We are home!
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DEAR MECHELLE AND TIM, SO GLAD COURTNEY IS DOING GOOD, WE'LL HAVE HER
IN OUR
PRAYERS. LOVE MARILYN
=========================================================================
Date: Tue, 6 Jul 1999
16:08:48 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Hi there!!!
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HI SUMAYA, WELCOME TO THE FAMILY, HOPE YOU NIECE IS DOING GOOD.
I'M A
GRANDMOTHER OF CARLEE 1 YEAR OLD WITH APERTS.HIS IS OUR ANGEL GIRL
AND A
BLESSING TO THE WHOLE FAMILY, THESE KIDS ARE THE GREATEST. TAKE CARE
MARILYN
=========================================================================
Date: Tue, 6 Jul 1999
22:17:50 EDT
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From: Copperhd87@AOL.COM
Subject: Re: We are home! Helmet advice
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Mechelle,
I'm so glad to hear you're home. That's the best feeling in the
world after
being thru a long stay in the hospital.
Mitchell wore a helmet after his cranial reconstruction surgery.
(He has
only craniosynostosis, he does not have Apert's.) His helmet
was for
protection only. It was not for shaping. He was just supposed
to wear it
whenever he was in a situation where he might bump his head.
Since he had only been walking about a month before his surgery, the
helmet
was great!! I was so glad to have it. I think every
child that age should
have to wear one. (ha, ha!) The day after he was
released from the
hospital, he stubbed his toe on an uneven, very small piece of concrete,
lost
his balance and feel right on the back of his head. Can you say
"Bounce?"
If it hadn't been for that wonderful helmet, we would have probably
been
right back in the hospital.
I mainly had him wear it when he was toddling around the house or outside
and
I wasn't right there with him. If he was on my lap, watching
TV, etc., I
took it off. He did not sleep in it or ride in the car in it.
The only time
he really bumped his head was right after we got in the house from
the car.
He just stumbled over his own two feet and hit his forehead on the
door
facing. He had a soft spot swell up that was about the size of
a small hen's
egg. It was very mushy to the touch. We called his surgeon and
he said it
was OK--exactly what he would expect. Don't take that as medical
advice if
you have an accident--that was just our experience.
We decorated Mitchell's helmet with stickers and it was really kind
of cute.
Someone here on the board gave us some very good advice--be sure not
to let
her get so sweaty that the incision begins to break down. We
tried to keep a
close eye on that and I did appreciate that advice very much.
I don't think
this would apply if you have a DOC band for shaping because they are
open on
the top.
If you have any more helmet questions, just let me know. Congratulations,
again.
Resa
=========================================================================
Date: Tue, 6 Jul 1999
19:32:07 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: A BIG thank you to Nate Finch
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Hi Nate Finch, I just wanted to tell you thank you for your cute letter
and
for your pictures. You have a very nice family and it looks like you're
going to be the next Nolan Ryan. Thats great that you can play baseball
with
your brother! I hope you have a great summer with your family! I will
be
sending out my pictures as soon as I get them back from having them
printed,
And will send you one.ok. Well you have a great day tomorrow. Thanks
again
for the great letter you're a hundsome little guy!. I tried to E-mail
you
privatly but couldn't find you on Teeter's page, so here you are! Take
Care.
Max in hot Modesto Calif.
=========================================================================
Date: Tue, 6 Jul 1999
21:45:47 -0600
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From: cgraham <cgraham@INFOAVE.NET>
Subject: HI FROM AFRICA
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hello Sumaya, My name is Denise Graham and I have a son who is 3 years
old
and has aperts. I know of a little boy who is three in Asmara,
Eritrea and
he has aperts. Is this anywhere near you? If so or if you
would like to
speak with them I can ask his mom to contact you or give out her number
for
you to contact her. She is really nice and has spent a lot of
time here in
America since her sons birth. She is back in Africa now.
I wish you and
your family well!
Denise Graham
=========================================================================
Date: Tue, 6 Jul 1999
22:47:32 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Hi!
I wore a helmet after my skull surgery 34 years ago. Mom said
it was to
maintain the shape of my head produced by the doctors. I still
have the
helmet somewhere. I also wore a brace on my shoes to keep them
from
turning out. There was a bar that connected my feet (while I
slept) and
put tension on my feet. Just FYI.
Let me speak from recent experience and tell you this depression thing
is
not easy to kick. It has been a rough few months. Some
days are getting
better but for the most part I still want to stay in bed and hide.
I
have homework from my counselor that might put a scratch in the healing
process. It involves writing, something I am good at! keep
your
thoughts coming my way!!!
Thanks! Joanne
=========================================================================
Date: Wed, 7 Jul 1999
00:10:26 -0700
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From: Patricia Mc Donald
<goofy@WCOIL.COM>
Subject: Needing someone Special
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0017_01BEC80D.1D676D00"
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------=_NextPart_000_0017_01BEC80D.1D676D00
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charset="iso-8859-1"
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Hello!=20
First of all I want to apologize for
not responding to those of =
you who have e-mailed me. Please understand,it wasn't because I didn't
=
want to. I have been very depressed lately and haven't had the =
motivation to do much. But I will to try answer as soon as I possibly
=
can.
I have been so lonely. I need some friends,and
to be honest a =
"Special"man in my life. I'm not sure if this is the right time or
place =
to be asking this,but is there anyone in the Ohio (Lima) area who would
=
be interested in starting a friendship? And are there any available
guys =
looking for a relationship? If anyone is interested please send me
an =
e-mail to goofy@wcoil.com I would love to hear from you!
Again if I =
have gotten out of line,I sincerly apologize. I'm just needed some
=
support and wasn;t sure where else to turn.
I will go for now. Hope to hear something soon!
Patty McDonald
------=_NextPart_000_0017_01BEC80D.1D676D00
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello! </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
First =
of all I=20
want to apologize for not responding to those of you who have e-mailed
=
me.=20
Please understand,it wasn't because I didn't want to. I have been very
=
depressed=20
lately and haven't had the motivation to do much. But I will to try
=
answer as=20
soon as I possibly can.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>
I =
have been so=20
lonely. I need some friends,and to be honest a "Special"man
in =
my=20
life. I'm not sure if this is the right time or place to be asking
=
this,but is=20
there anyone in the Ohio (Lima) area who would be interested in starting
=
a=20
friendship? And are there any available guys looking for a relationship?
=
If=20
anyone is interested please send me an e-mail to <A=20
href=3D"mailto:goofy@wcoil.com">goofy@wcoil.com</A> I would love
to hear =
from=20
you! Again if I have gotten out of line,I sincerly apologize.
I'm =
just=20
needed some support and wasn;t sure where else to turn.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> I will go for
now. Hope to =
hear something=20
soon!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Patty =
McDonald</FONT></DIV></BODY></HTML>
------=_NextPart_000_0017_01BEC80D.1D676D00--
=========================================================================
Date: Wed, 7 Jul 1999
01:50:57 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Hi there!
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Maryam,
What a beautiful beautiful letter. Welcome. You spoke
of all of our love
for these wonderful gifts from god!
Love, Lisa Guyette Mother of Samantha, 8 months on the llth with Aperts
=========================================================================
Date: Wed, 7 Jul 1999
02:01:54 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Alice's reply to "Hi There"
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Alice,
That's exactly how we feel. Samantha's birth was so healing.
People who
were out of our lifes for dum little problems are back. Grandparents
have
joined together at holidays because of this little angel.
My husband and I
are as close as can be. Friends that I might lose touch with are always
in
contact because of Samantha. My husbands ex wife is a big
supporter, and my
ex husband contacted me after eight years to give his support after
she was
born. The love that she has is unreal. But the joy she
brings everyone
since her birth is overwhelming. I don't know if all of this
would be the
case if she didn't have Aperts. She's slower at acheiving
many of her
milestones. But when she does she beams with pride, and we have
tears of
happiness. I couldn't imagine having any other child fill
our lives with
such joy.
Love, Lisa Guyette, Daughter Samantha 8 months with Aperts
=========================================================================
Date: Wed, 7 Jul 1999
02:26:53 EDT
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From: Debbie Shepherd
<Dshep9141@AOL.COM>
Subject: ALL THE BEAUTIFUL PICTURES
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Hi All !
I am Debbie Shepherd (Jillian's
mommy). I just wanted to thank everyone who has sent pictures so far.
The
families and all the children are just beautiful. My whole family has
enjoyed
seeing them.We are working very hard on getting ours out to evryone.
We have
had several family crisis in the past few months. I have had two operations,
my husband has had a very involved surgical procedure, and our 16 year
old
nephew just underwent a 12 hour opereation to remove a tumor that was
wrapped
around his spine. So it has been very intense here in PA.hopefully
all this
is behind us. I have many good pictures of Jillian but I am waiting
for a
good family picture. I just took some at my sons graduation. I hope
they turn
out so I will be able to send them soon.I really enjoy being part of
the
listserv. I look forward to reading it almost evrey night. It shares
many of
my own hopes and also lessons many of my fears. congrats to all the
post ops
and welcome to the new families. I can't wait to be a part of next
years
vacation plans.It looked and sounded like such a great time!
take care
Debbie Shepherd mommy to Jillian 2 1/2 ( undiagnosed cranial
facila
syndrome) paul Jr. 6 yrs and Danny 1yr.
=========================================================================
Date: Wed, 7 Jul 1999
02:51:26 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: This and that
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Mechelle,
We were told that Samantha would only need one pint of blood, but ended
up
needing two. We had 3 pints donated, but I didn't have her blood
type and no
one could give it to me in the time we had to donate it. So only one
was good
for her. I guess with both of our stories, it's safe to say if
they say one,
give three, to be safe. And if you don't have your child's
blood type have
it checked before hand anyway you can.
We wish Courtney a speeding recovery. What is a bilateral
cranial surgery?
Can I ask everyone something? Am I overreacting? I
left a message for our
plastic surgeon two weeks ago. We are set with the hand doctor
and just
finished with the neurosurgeon. But I'm lost as to the cleft
palate and
midface. And Samantha's neurosurgeon asked us Friday if we were
set in Sept
for her brow advancement. First I heard of this. We were
told only that her
forhead was normal and appeared large so we weren't have tohave a forehead
advancement. Now I'm hearing though she needs a brow advancement.
Well i
went to to the plactic surgery department and asked to find out what
ournext
step is. We were told we have to meet with the team and our plastic
surgeon.
I asked his secretary if he ever said anything to her regarding our
case,
because he didn't call us. She said no, but that we should make
a
appointment with team.
Samantha's case manager called today and said that the plastic surgeon
has
turned our case completely over to the man who is doing her hands.
I'm a
little upset by this. Am I naive to think that it might of been
nice if he
could of called us and told us that he felt it would be best to not
have so
many doctors as I heard he said.
What bothers me I think is that we've had to consultations with this
man.
Very nice and we grew to trust him with our daughter's whole case.
We also
liked her hand surgeon, but we didn't look at him or interview him
as the man
overseeing all of her sugeries.
Sorry for so much writing, I guess my questions is do you guys think
the
first Plastic surgeon should of called us and stated why he thinks
we should
have another doctor?
Love, Lisa Guyette
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Date: Wed, 7 Jul 1999
13:38:26 +0200
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From: Sumaya Jhetam
<sumayaj@TRUSTCELL.CO.ZA>
Subject: Thankyou...
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Hello,
Thankyou everybody for showing so much interest in Maryam, for offering
so much advice & for such kind words of encouragement.
Maryam goes to "Wentworth Hospital" in Durban in South Africa.
Here a
panel of doctors study her x-rays & decide from here what is to
be done.
But, I have shown all your e-mails to her parents & they have agreed
to
get a second opinion but we are not to sure as to whom to go to.
We
will scout around & or maybe you guys could assist me.
The doctors have said that the tips of the bones of her index, fore
&
ringfinger are fused together and they therefore cannot separate them.
Is this true?
I look forward to a reply!
Thanks...
Sumaya.
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Date: Wed, 7 Jul 1999
13:52:37 +0200
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From: Sumaya Jhetam
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Denise,
The little boy you mentioned is quite a distace away from me.
I'm
actually in South Africa that is at the bottom of the continent.
Thanks anyway...
Sumaya
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Date: Wed, 7 Jul 1999
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From: GSieb91515@AOL.COM
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Lisa,
I definately agree with you. Everything that I've been told, heard
or read
is that the Cranialfacial Plastic Surgeon heads up the team and that
he is
the main contact. Our team is in Dallas but we do see several
other doctors
in Houston due to the distance. Our hand surgeon, ENT, cardiologist,
ortho,
etc. is in Houston. Regardless of who is doing what, you should
be informed
of all decisions, changes, etc. I would let them know that your
not happy
with the manner in which they are commmunicating with you. Good
luck.
Brenda
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Date: Wed, 7 Jul 1999
09:03:13 EDT
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From: GSieb91515@AOL.COM
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Sumaya,
Welcome. My son Jonathan's fingers were all fused at the tips
also (his
thumb was out and his pinkie was open at the tips). He is 2 yrs.
old and all
his fingers are released and functional. His surgeon is the Chief
of Plastic
Surgery at Baylor in Houston's medical center. I know from this
large family
of ours, that there are many other apert children with all of their
fingers
released that were fused also. Dr. Upton is another fine hand
surgeon in the
Boston area. I know there are many throughout the United States.
Please let
me know if I can be of any assistance. The World Cranialfacial
Foundation in
Dallas helps many families in other countries. There are other
foundations
in the States as well. I encourage you to seek a second opinion.
Brenda Siebert
Houston, Texas
GSieb91515 (aol e-mail address)
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Date: Wed, 7 Jul 1999
09:32:36 EDT
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Mechelle-
Jonathan wore a doc band after his first cranial surgery done in Houston.
It
was exactly like Raquel said in terms of care, etc. J wore his
in the summer
though. It rounded out the back of Jonathan's head perfectly
but we were
told it probably caused some of his teracephaly (tower head) because
his
brain couldn't push his forehead out so it had no where to go but up.
We
were in the process of being fitted for a second helmet because we
didn't
like the way things looked, when we decided to go for other opinions
and
that's when we changed to Dallas and had Jonathan's second surgery.
They
lowered the heighth of his head about an inch and a half but he was
already
15 months old so that's about all they could get. I think there
are before
and after photos on J's page. Ironically, his surgeon in Dallas
also
mentioned using the doc band after that surgery but we decided not
to after
the first experience. I think each case is very different depending
on how
they mold the doc band and why it is being used. Sorry I can't
be more
helpful but this was our experience.
We also had a situation with the blood during our first cranial surgery.
George had donated his blood and we were in the waiting room after
they had
just taken Jonathan back. About 20 minutes later the surgeon
was beckoning
us at the door. He said the components of the blood didn't match
and they
couldn't use it. We could cancel surgery or use the blood bank.
Because
they had already made the incision we went with the blood back also,
with a
lot of apprehension. I felt completely out of control in this
situation.
But everything worked out fine.
I'm so glad to hear that Courtney is doing well and recovering.
It seems
like yesterday when we were in your shoes. Get as much rest as
you can. How
is your other daughter doing?
Brenda
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Date: Wed, 7 Jul 1999
09:39:50 EDT
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Jenny,
Hope things are getting back to normal there. Sorry to hear you
had such a
time. We had a disaster flood in Oct. of 94. It was quite
devastating.
However, we were not personally flooded either.
Brenda
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Date: Wed, 7 Jul 1999
09:57:16 EDT
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From: Patbrat718@AOL.COM
Subject: Database
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Here, here Don, I agree completely. Privacy is sacred to us all.
I love
sharing Jasmyn with the Listserve and having the opportunity to share
all the
others lives, but part of that comes from the comfort and security
you have
set up here on the list. We enjoy just being part of this great
big loving
family! I don't want to see things divided up into seperate groups.
Add my
two cents in :)
Thanks,
Patti
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Date: Wed, 7 Jul 1999
10:15:56 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Using Banked Blood
In-Reply-To: <65733ca6.24b4b0f4@aol.com>
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> us at the door. He said the components of the blood didn't match
and they
> couldn't use it. We could cancel surgery or use the blood bank.
Because
> they had already made the incision we went with the blood back also,
with a
> lot of apprehension. I felt completely out of control in this
situation.
> But everything worked out fine.
If a hospital uses ONLY volunteer
donor blood, banked blood should
be as safe, statistically, as directed donor blood. Actually,
they
tell us it's safer -- but I think that's only true if you have to
have donors other than parents. If a relative or friend has a
risk
factor that the family is unaware of (sexual behavior or drug use)
they may not tell when asked to donate blood. Being able to recruit
donors gives a sense of control - but that may be a false sense of
security if the donors are less than totally honest about their risk
factors.
Having said that, if one of my kids needed
surgery, my
husband & I would be right there in line to donate. If it
was my 3
year old, the older brother with the same blood type would be there
too (he's 16). My parents are too old and only 2 of my 6 siblings
would I consider lower risk than the average volunteer donor -- and
they're out of state. I'm in favor of limited directed donation.
Be
VERY sure you know your donors as well as you think.
Judy
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Date: Wed, 7 Jul 1999
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Joanne:
So glad to hear from you. I was thinking about you yesterday,
wondering how
you were. You're still in my prayers. Depression is a terrible
thing to
have to go through. Has your doctor recommended medication?
They seem to
have come so far in that area since the old valium route. I wish
I could
take away your pain.
Love you much,
Alice in Orlando, FL.
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Date: Wed, 7 Jul 1999
10:08:33 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Using Banked Blood
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Judy, this is a really good point. But isn't all blood screened
before
transfusion, anyway? How does the blood system work there?
> If a hospital uses ONLY
volunteer donor blood, banked blood should
>be as safe, statistically, as directed donor blood. Actually,
they
>tell us it's safer -- but I think that's only true if you have to
>have donors other than parents. If a relative or friend has
a risk
>factor that the family is unaware of (sexual behavior or drug use)
>they may not tell when asked to donate blood. Being able to
recruit
>donors gives a sense of control - but that may be a false sense of
>security if the donors are less than totally honest about their risk
>factors.
My daughter EvaJessie donated her own blood before surgery two years
ago.
She was four at the time. Neither my husband or I could
donate for her.
And that is the limit of our directed donation here. I reasoned
at that
time, that because of her medical future, she would be having lots
of
occasions for blood to be required. I reasoned that from the
beginning she
should always have her own blood (and that, as an adult, she can then
choose
for herself whether she wants banked blood.) It was a tough choice
to make
because it meant putting her through the blood collection process.
IN the end, we had a similar situation to what has been described:
there
was a tear in the saggital sinus (the big blood vessel that runs
al