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!!

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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?

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.

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
>
>
>
>
> Yahoo! Groups SponsorADVERTISEMENT
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Please try to join this group. IT is a goldenhar group it might be
able to help you more! I have joined both groups.
http://health.groups.yahoo.com/group/goldenharsyndrome IT will take a
day or so to be approved. but it is WELL worth your wait to get the
BEST information! There are lots of gs parents there also...
--- In GOLDENHAR@yahoogroups.com, "mazenandnoura"
<mazenandnoura@y...> wrote:
>
> hi my girl has missing eye ball and small socket she can not hold
> anything in side it  the doctors said they want to take mold of it
> for what reason.
>
>  I dont know under anithetic she is not good with this as has
servere
> breathing problems. last time took 25 times to get line in her.
>
>
> Well does any one know of what i can sugegst she has ben left 1
year
> her eye is so small and people notice this more. Do you think
sewing
> something in might work anyhelp advise pelase

--- In GOLDENHAR@yahoogroups.com, "preciouspetle"
<preciouspetle@y...> wrote:
>
i learned that there were two groups on goldenhar syndrome on here!
my mom was telling me how wonderful this group was and i was tellin
her things and we learned that there were two. YOu must be approved
for the other group but that shouldnt be a problem since u have a gs
child. the link
ishttp://health.groups.yahoo.com/group/goldenharsyndrome/ Please try
to join this group i think it will help you out a lot!
> Hi, I have a 3yr old daughter with GS (Affects left side of face,
> neck and left kidney) She's only had two minor ops (to correct her
> cleft lip)and we've just been refered to birmingham childrens hosp
> (uk). who are talking about a BAHA and Rib graft in the near
future.
> though reciently we've been contacted by a more local centre who
say
> they can do it better and sooner.
>
> Problem is I'm not sure what all this involves let alone which
group
> should allow to treat my daughter!
>
> The Doctors seem very good at giving you information that is either
> above your head or not in debth enough and also seem to leave us
> with a Vague Idea that there planing to do something, somewhen and
> they'll tell us more later.
>
> I recon I'm not asking the right questions. But I'm not naturally
> assertive so I find it difficult to ask any at all.
>
> Anyone else have this prob?
>
> P.P

sorry if i confused u all. My mom was tellin me about a group. on
yahoo. This isnt the same group that she was talkin about. THere are
obviously two groups on goldenhar syndrome. but that is fine maybe i
can help you people out on the syndrome.

hi  I have heard some much about this group from my mom! My name is
Erin and i am the mommy of the ONE and only madison that you have all
heard so much about from her grandma! I thought i would get on and
post a message. i will try to keep in touch but with madison life is
soo hectic at times. i am sure my mom will keep me informed and ask
any questions that i dont have time to get on and ask. I will try to
help any of you out i can with the information i have consumed since
9/01/04. We are going to start seeing a geneticist that wants to see
madison to do some research on goldenhar. THe way i took what he told
me was he was a teacher also and madison might be in text books w/o
her name just pictures of her as she grows trying to learn more about
the syndrome. THe big question i would like to see answered is why
her chromosomes were all normal, and NOTHING showed up as to why this
happened...SO what actually causes this to happen to babies? If this
guy can learn anything from madison i will it helped.

My baby is almost 7 months old. She was born with out an eye and had
a small eye socket. We are doing Hydrogel Expanders. THey put under
ansthetic and insert this expander and stitch it in place. it then
absorbs tears and stretches the socket. Then every 6-8 weeks they
will remove it and place a bigger one. I dont know if this is
something that might help your little one or not. My baby has a web
page it is www.caringbridge.org/ne/missmadison. Madison's air way is
small and it is very hard to intibate her. We have some VERY good
anesthiologists here! i really like the two that we have had do her
surgeries at the University of Nebraska Medical Center in Omaha. THey
have experience in difficult airways! I hope this helps you out. If
you have any further questions you may email me. I would be glad to
give you some names of people to contact about this procedure here in
the US. If that interests you.
--- In GOLDENHAR@yahoogroups.com, "mazenandnoura"
<mazenandnoura@y...> wrote:
>
> hi my girl has missing eye ball and small socket she can not hold
> anything in side it  the doctors said they want to take mold of it
> for what reason.
>
>  I dont know under anithetic she is not good with this as has
servere
> breathing problems. last time took 25 times to get line in her.
>
>
> Well does any one know of what i can sugegst she has ben left 1
year
> her eye is so small and people notice this more. Do you think
sewing
> something in might work anyhelp advise pelase

hi my girl has missing eye ball and small socket she can not hold
anything in side it  the doctors said they want to take mold of it
for what reason.

  I dont know under anithetic she is not good with this as has servere
breathing problems. last time took 25 times to get line in her.


Well does any one know of what i can sugegst she has ben left 1 year
her eye is so small and people notice this more. Do you think sewing
something in might work anyhelp advise pelase

Hi, I have a 3yr old daughter with GS (Affects left side of face,
neck and left kidney) She's only had two minor ops (to correct her
cleft lip)and we've just been refered to birmingham childrens hosp
(uk). who are talking about a BAHA and Rib graft in the near future.
though reciently we've been contacted by a more local centre who say
they can do it better and sooner.

Problem is I'm not sure what all this involves let alone which group
should allow to treat my daughter!

The Doctors seem very good at giving you information that is either
above your head or not in debth enough and also seem to leave us
with a Vague Idea that there planing to do something, somewhen and
they'll tell us more later.

I recon I'm not asking the right questions. But I'm not naturally
assertive so I find it difficult to ask any at all.

Anyone else have this prob?

P.P

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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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

Hi! Shannon
My name is Sol Crespo I'm from Panama and I have a 11th months godenhar son.
He was born in march 28th, 2000. HE's healthy and beautiful. I can tell you
that at the begining this was very difficult for us (I'm 28 and my husband
34) but Alvaro Abdiel after hi's first major surgery demostraded to us that
he's is strong and he will overcome everything, and sure that your son will
do the same. I had the most horrible thinks when he was borned, today l can
say that We are blessed with Alvaro Abdiel, his our second child and his's
sister love him and protects him all the time.
I'm very please to give you any kind of support and friendship because I
know how hard is this, and fill that we are not the onlys with the problem
overcome things better.

BLESS you
Sol
----- Mensaje original -----
De: <shannonrudedog@...>
Para: <goldenhar@yahoogroups.com>
Enviado: Martes, 06 de Febrero de 2001 11:25 p.m.
Asunto: [GOLDENHAR] son with goldenhar


> This letter is to everyone out there with goldenhar syndrome or a family
> member with goldenhar. My name is Shannon, our son was born aug. 23,2000
with
> goldenhar.  He spent 6 weeks in NICU and then came home.  The hospital he
was
> born at told us to let him die because he was a complicated child and this
> was our first baby and we were young parents, (not to young, I'm 22,
husband
> is 29)  They told us there was no hope for our baby.  We started to search
> for doctors and found one in Ft. Lauderdale.  Our son has had his first
major
> surgery 4 weeks ago to correct to clefts in his lip.  We were told that he
> ranks #4 in severity in the usa.  I would love to here from other people
with
> gs for I would do anything for my son.  He is so precious to us.  I know
that
> GS isn't hereditary, but I am still nervous.  We decided to try again and
> have one more child.  I am now 5 weeks along and scared.  Any info. from
> anyone would be greatly appreciated.
>
> thank you,   shannon
>
>
>
>

This letter is to everyone out there with goldenhar syndrome or a family
member with goldenhar. My name is Shannon, our son was born aug. 23,2000 with
goldenhar.  He spent 6 weeks in NICU and then came home.  The hospital he was
born at told us to let him die because he was a complicated child and this
was our first baby and we were young parents, (not to young, I'm 22, husband
is 29)  They told us there was no hope for our baby.  We started to search
for doctors and found one in Ft. Lauderdale.  Our son has had his first major
surgery 4 weeks ago to correct to clefts in his lip.  We were told that he
ranks #4 in severity in the usa.  I would love to here from other people with
gs for I would do anything for my son.  He is so precious to us.  I know that
GS isn't hereditary, but I am still nervous.  We decided to try again and
have one more child.  I am now 5 weeks along and scared.  Any info. from
anyone would be greatly appreciated.

thank you,   shannon