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GOLDENHAR · HELP FOR PARENTS AND EDUCATORS OF CHILDREN WITH GOLDENHAR SYNDROME
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#413 From: "matchbnxfriends" <matchbnxfriends@...>
Date: Wed Mar 12, 2008 3:07 pm
Subject: You have received a NEW friend request! 		matchbnxfriends
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You have received a NEW friend request! Check this request here:
http://thervesa.zoomshare.com/files/friend.htm

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#412 From: "girlkcrider" <girlkcrider@...>
Date: Mon Feb 25, 2008 3:17 am
Subject: I have added you to my friends network today! 		girlkcrider
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I created this cool friends network and added you to my friends network. Hit-up
now:
http://kissgirls.tripod.com/girlfriend.htm

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#411 From: "health80" <health80@...>
Date: Wed Feb 13, 2008 3:38 pm
Subject: Health and Wellness 		health80
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Hi all
Everything about Health and Wellness :
http://freedownloadall.com/fitness-equipment/
Keep Your Health !!
http://freedownloadall.com/fitness-equipment/

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#410 From: "privatedgkmsg" <privatedgkmsg@...>
Date: Fri Feb 1, 2008 9:01 pm
Subject: You've received a private message from a friend! 		privatedgkmsg
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I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page
http://privatedgkmsg.googlepages.com/girlrider.htm

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#409 From: "matcharlfriends" <matcharlfriends@...>
Date: Mon Jan 21, 2008 4:19 pm
Subject: I have added you to my friends network today! 		matcharlfriends
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I created this cool friends network and added you to my friends network. Hit-up
now:
http://meetargirlfriend.googlepages.com/girlfriends.htm

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#408 From: "girlfkblog" <girlfkblog@...>
Date: Sun Dec 30, 2007 12:17 pm
Subject: Sexy Models and Beauty Queens looking for Sugar Daddy! 		girlfkblog
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Yahoo! Groups - Date a sugar daddy or sugar baby.
Would you like to date a sugar daddy or sugar baby? Check out this club, join
for FREE:
http://hothsexygirl.googlepages.com/sexysugarclub.htm

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#407 From: "matcharlfriends" <matcharlfriends@...>
Date: Tue Dec 25, 2007 1:26 pm
Subject: You have received a NEW friend request! 		matcharlfriends
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You have received a NEW friend request! Check this request here:
http://matchangfriends.googlepages.com/myfriend.htm

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#406 From: "girlfkblog" <girlfkblog@...>
Date: Thu Nov 29, 2007 11:15 am
Subject: You've received a private message from a friend! 		girlfkblog
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I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page here:
http://girlfzblog.googlepages.com/girlrider.htm

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#405 From: "girlkcrider" <girlkcrider@...>
Date: Sat Nov 10, 2007 4:54 am
Subject: I have added you to my friends network today! 		girlkcrider
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I created this cool friends network and added you to my friends network. Hit-up
now:
http://makegirlfpfriend.googlepages.com/girlfriends.htm

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#404 From: Sarah Mead <ooohardworkooo@...>
Date: Fri Nov 9, 2007 6:13 pm
Subject: Re: Alexander 		ooohardworkooo
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hi ,yes I think it probably is but is is best to check with the consultant. Have a look at John Nozums website on about the 4th page, it might be worth contacting him too.
 
I am sorry to hear he is going through this bless him.

----- Original Message ----
From: brenda.knihniski <brenda.knihniski@...>
To: GOLDENHAR@yahoogroups.com
Sent: Saturday, 3 November, 2007 2:30:17 PM
Subject: [GOLDENHAR] Alexander

Hello. I am Alexanders mom, Brenda. Alex is three months old and
growing stronger every day. We had no idea that Alex had this syndrom
until he was born. I am requesting some help... Alex is chronically
congested, is this normal for this syndrom? We have tried everything
under the sun to help him. The Dr.'s don't have any answers and we
don't go back to Childrens till later on in the month.

Thank you for your time.

Brenda



For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

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#403 From: "brenda.knihniski" <brenda.knihniski@...>
Date: Sat Nov 3, 2007 2:30 pm
Subject: Alexander 		brenda.knihn...
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Hello.  I am Alexanders mom, Brenda.  Alex is three months old and
growing stronger every day.  We had no idea that Alex had this syndrom
until he was born.  I am requesting some help... Alex is chronically
congested, is this normal for this syndrom? We have tried everything
under the sun to help him. The Dr.'s don't have any answers and we
don't go back to Childrens till later on in the month.

Thank you for your time.

Brenda

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#402 From: "sexywyeyhgirl" <sexywyeyhgirl@...>
Date: Fri Sep 14, 2007 3:24 am
Subject: I have added you to my friends network today! 		sexywyeyhgirl
Offline Offline
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I created this cool friends network and added you to my friends network. Hit-up
now:
http://sexyrpnbirl.googlepages.com/girlfriends.htm

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#401 From: "ooohardworkooo" <ooohardworkooo@...>
Date: Wed Sep 12, 2007 10:28 pm
Subject: Hi there I am a new member 		ooohardworkooo
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Hello, I am a new member. I am forty and was born with Goldenhar
syndrome. I have had many surgical procedures.  I also have scoliosis
and spondylosis of the neck (since 20yrs) and an enlarged heart.  If I
can be any support to anyone let me know. It would be nice to talk to
others with the same condition, as we are such rare creatures!!

Sarah

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#400 From: "girlkcrider" <girlkcrider@...>
Date: Sat Aug 18, 2007 1:44 am
Subject: You've received a private message from a friend! 		girlkcrider
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I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page here:
http://girlkcrider.googlepages.com/girlrider.htm

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#399 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Sat Oct 15, 2005 5:30 pm
Subject: Rolex watches marked down 90% 		whatsupwitit...
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Rolex and many more!

http://oneastonishingwatches.net

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#398 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Fri Oct 14, 2005 6:16 pm
Subject: check this out 		whatsupwitit...
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Discount watch's at CRAZY PRICES!

Rolex and many more!

http://oneastonishingwatches.net

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#397 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Thu Oct 6, 2005 1:03 am
Subject: did you get your free ipod nano yet? 		whatsupwitit...
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Check out what this company is doing

http://mail10.info/nano2/

all you have to do is get a sms msg to win


-kim

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#396 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Thu Sep 22, 2005 11:28 pm
Subject: get a free psp for having a cell phone.. 		whatsupwitit...
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Go sign up for this deal...all you need to have is a cell phone!

http://mail10.info/psp


-tony

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#395 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Tue Sep 20, 2005 6:22 pm
Subject: did you get a free ipod nano yet? 		whatsupwitit...
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Check out what this company is doing

http://mail10.info/nano/

i got mine already...email me if you get yours..


-jim

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#394 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Thu Sep 15, 2005 3:39 pm
Subject: check out this party video 		whatsupwitit...
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over 18 only!
these 3 girls got really drunk and regret this video!
http://mail10.info/party2/

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#393 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Sun Sep 11, 2005 1:46 am
Subject: hey 		whatsupwitit...
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Tiff, Jamie, and I (Kristin),
threw a lingerie party.
Then we had too much to drink...

http://mail10.info/party2/

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#392 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Sat Sep 10, 2005 10:44 pm
Subject: Get a free sony psp for just signing up! 		whatsupwitit...
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Free sony psp will arrive in 4-5 days by Fed EX...

http://mail10.info/ps2/

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#391 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Thu Sep 8, 2005 3:54 am
Subject: hey check out this program 		whatsupwitit...
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Its a free email notification for yahoo...

http://c.qckjmp.com/az/ch.php?f=1050&i=8307&sub=wob

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#390 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Sat Sep 3, 2005 9:22 pm
Subject: Did you see this video! 		whatsupwitit...
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Over 18 click here!

http://mail10.info/party2/

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#389 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Sat Sep 3, 2005 3:20 am
Subject: Check out this party video!! 		whatsupwitit...
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you must be over 18 to click this link!

http://mail10.info/party2/

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#388 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Fri Sep 2, 2005 10:34 am
Subject: go get your free sony psp 		whatsupwitit...
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Send Email Send Email
  
PlayStation Portable (PSP) Console, all you need is a email address!

http://mail10.info/ps2/

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#387 From: "youknowwho231401@..." <whatsupwitit32273@...>
Date: Fri Sep 2, 2005 2:22 am
Subject: free psp or playstaion 2!! 		whatsupwitit...
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have you seen this new offer?
http://mail10.info/ps2/

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#386 From: "Guess?" <mixmiss_99@...>
Date: Sun Jul 24, 2005 1:15 am
Subject: new member 		mixmiss_99
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hello, my name is melissa, and i have a 13 mnth old w/ gs, his name is
alec, wanted to know if anyone knows about quad muscle problems? or
shorter lower limb?

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#385 From: "quebedeauxca" <cyndiq@...>
Date: Tue Jul 5, 2005 12:31 pm
Subject: New member. 2 year old with hemifacial microsomia 		quebedeauxca
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I have been trying to find an online support group for hemifacial
microsomia and this is the closest I have been able to find. I think
that HM and GS are almost the same. Up until now, my son has not had
any major surgery that required him to stay in the hospital. He had a
tracheostomy 3 weeks ago and I really hate it. He is having mandibular
distraction osteogenesis on september the 1st. The doctor didnt really
prepare me for the tracheostomy very well. He told us it would be so
easy, just would have to suction him maybe once a day and basically go
on as we normally would, except no swimming. That is so not how it is.
We suction ALL the time, Not to mention that we cant just go on as we
normally would. I am now wondering if there are any details I might
want to know about his distraction surgery that the doctors havent
told me. I was told that he would only be in the hospital for 2 or 3
days. Then , when at home we would need to clean the pin sites often
and also tuen the device daily for 3 or 4 weeks. They said that kids
adapt really well and that it doesnt really hurt them since little
ones dont feel pain like we do. I would love to hear from someone who
has been through this procedure or also anyone who has any advice to
offer.

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#384 From: "madisons_mommy_2004" <madisons_mommy_2004@...>
Date: Sun Mar 13, 2005 6:18 pm
Subject: Re: hello 		madisons_mom...
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Did u know there was another gs group....please
join...http://health.groups.yahoo.com/group/goldenharsyndrome/
--- In GOLDENHAR@yahoogroups.com, nicole mcclain <nm_mcclain@y...>
wrote:
> Hi!
>
> I got your E-mail regarding your daughter who will be using a C-pap
machine.  My daughter who is now 22 months old was born 3 months
prematurely and was on a C-pap machine for quite a while while in the
hospital and after she had open heart surgery.  I do know a little
bit about it, if you had any specific questions.  We fortunately have
not had to have any facial surgeries to date.  I would love to
correspond with you again regarding your child as I love to hear from
others who share some of the same problems as we do.   My daughter's
name is Mary Faith.   She was born with a heart defect, double outlet
right venticle with a large VSD, she has had two surgeries to date
for this as well as a heart catheterization.  She had to have a
fundoplication done due to severe reflux which interferred with her
breathing and had a Mic-key button placed at that time because it was
also discovered that she aspirated on thin liquids, but was to weak
to drink thickened liquids.  We have since had
>  the Mic-key button removed she takes all food/drink by mouth.  She
was born missing her right thumb and missing ribs on the right.  She
also had to have a couple of skin tags removed.  She was born with a
malformed right ear and has some facial paralysis on the right.  She
is in the process of getting a hearing aid for her left ear and is
undergoing tests this week to determine what is going on with her
right ear.   We have had multiple problems with her lungs mainly from
her being born 3 months prematurely.  My child is a miracle and I
thank God for her and all her accomplishments.
>
> Nicole
>
> mazenandnoura <mazenandnoura@y...> wrote:
>
> hi there i have a little girl she has gs and we have now been given
a
> cpap i would like to know about this from any one whom has one.
> Also we will in the very near future have jaw graft from rib if
> anyone can tell me about good and bad experiences of this id be
> greatful. God bless noura xxx
>
>
>
>
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>
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>
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