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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