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GOLDENHAR · HELP FOR PARENTS AND EDUCATORS OF CHILDREN WITH GOLDENHAR SYNDROME
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#440 From: "fojhehgd" <fojhehgd@...>
Date: Sun Jan 11, 2009 2:17 pm
Subject: I want to meet you. Give me a chance!
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#439 From: "matchbnxfriends" <matchbnxfriends@...>
Date: Wed Dec 24, 2008 4:39 am
Subject: Do u think this picture is funny?
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#438 From: "girlkcrider" <girlkcrider@...>
Date: Sun Nov 30, 2008 11:15 am
Subject: I have added you to my friends network today!
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#437 From: "wilson.kim01" <kimanddarren01@...>
Date: Mon Nov 24, 2008 10:23 pm
Subject: jaw distraction
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Hi, my name is Kim and I'm new to the group.  My daughter is 6 years
old and was born with Goldenhar's syndrome.  At the age of 5 she had
jaw distraction.  The first surgery she was in the hospital for 3 days,
mainly because she refused to eat or drink.  With the removal of the
device she was just in one night.
       As for pain, I think it is probably child specific.  My daughter didn't
have any pain for the first 3 weeks.  However, as the bone was
streched the last 3 weeks she was in a lot of pain.  She was on
oxycodone and motrin around the clock.  They had to increase her pain
meds multiple times.  Towards the end we were sleeping with her
because she cried all night long.  We would roll her off her distraction
side and she would stop crying for a little.
      The biggest problem we encountered was nutrition.  apparently
many kids jaws get locked in the closed postion.  She was unable to
eat any solid foods.  She started losing weight so we finally put her on
boost.  She was on a boost diet for 3 months.  I would recommend a
pre-op nutrition consult!
       The device does need to be turned 3 times a day so either you or
your husband have to be available to turn it during the day.  The pins
need to be cleaned 2 times a day.  The drainage can really build up as
the device remains in.  We did a daily bath and soaked her pins and
then the drainage would come right off without hurting her.
      I would also recommend a child psycologist to prepare for the
surgery.  We did not do this for the first surgery and my daughter was
very angry.  Her face was very swollen.  She looked like she went 3
rounds with Rocky.   The second time we met the child psycholgist and
discussed how she would look, what to expect, did a pre-op tour...
This went much smoother.
    One complication which we did not experience, but another family we
knew did was facial nerve paralysis with removal of the distraction
device.  Her daughter required eye drops to keep the eye moist and the
paralysis resolved over time.
      I don't know if at some point you will be doing ear reconstruction but
I have found a wonderful site on yahoo-  the microtia support group.  It
helps with all the different options for reconstruction.
hope this helps and good luck!,
Kim( mom to Kaylee age 6)

#436 From: "girlbkjblog" <girlbkjblog@...>
Date: Sat Nov 22, 2008 8:32 am
Subject: I want to meet you. Give me a chance!
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#435 From: Kim Wilson <kimanddarren01@...>
Date: Wed Nov 5, 2008 6:36 pm
Subject: OT: My list of Yahoo Groups
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Hi,

You can see a list of my groups on Grouply at the link below. Maybe you'll find some you want to join.

Kim

Here's the link:
http://www.grouply.com/register.php?tmg=1436030&vt=17007390





====================
This message was posted by a fellow group member who uses Grouply instead of email to access this group. Grouply blocks additional invitations from being sent to this group by anyone for 30 days. Group owners can permanently block future invitations. For more on how Grouply maintains privacy and protects you, see http://blog.grouply.com/protect/ .



#434 From: "girlbfmblog" <girlbfmblog@...>
Date: Sat Oct 18, 2008 8:02 am
Subject: You have received an important Message!
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You have received an important Message! Check it here:
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#433 From: "girlkcrider" <girlkcrider@...>
Date: Sun Oct 12, 2008 3:42 pm
Subject: I have added you to my friends network today!
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#432 From: "leen.meen" <leen.meen@...>
Date: Sun Oct 5, 2008 8:27 am
Subject: Get air tickets almost for nothing
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#431 From: "matchbnxfriends" <matchbnxfriends@...>
Date: Fri Oct 3, 2008 11:51 am
Subject: Do u think this picture is funny?
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#430 From: "girlkcrider" <girlkcrider@...>
Date: Sun Aug 24, 2008 9:47 am
Subject: I have added you to my friends network today!
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#429 From: "girlfkblog" <girlfkblog@...>
Date: Tue Aug 19, 2008 2:44 am
Subject: Looking for someone real. Serious only!
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#428 From: "ken.jeen" <ken.jeen@...>
Date: Mon Aug 11, 2008 7:08 am
Subject: A list of Software that we must have on our computer
ken.jeen
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We don't have to spend fortunes to get software for different
applications. They are available in plenty as freeware.

Have a look at a list of all essential software that are available for
free here: http://freesoftware.internethunter.info

#427 From: "matchduxfriends" <matchduxfriends@...>
Date: Thu Aug 7, 2008 10:57 am
Subject: I wanna get to know you!
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#426 From: "leen.meen" <leen.meen@...>
Date: Wed Jul 30, 2008 5:54 am
Subject: Trendy Used Laptops
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#425 From: "girlkcrider" <girlkcrider@...>
Date: Thu Jul 24, 2008 3:11 am
Subject: I have added you to my friends network today!
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#424 From: "gagryrjsw" <gagryrjsw@...>
Date: Thu Jul 10, 2008 12:58 am
Subject: Your profile has been added to my personal space!
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#423 From: "girlkcrider" <girlkcrider@...>
Date: Mon Jun 16, 2008 1:00 pm
Subject: I have added you to my friends network today!
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#422 From: "anees_top" <anees_top@...>
Date: Thu Jun 12, 2008 11:18 am
Subject: Why BreasCancer is Dangerous for life and how it will recoved?
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Dear Members,

Each year, more than 5,000 women in Michigan discover they have breast cancer. In fact,

http://www.onlinebreastcancerinfo.com
one out of every 10 women will develop breast cancer  at some time in her life. After initial

treatment, most of these women are able to continue living normal, productive lives. This

booklet will help you better understand breast cancer .

http://www.onlinebreastcancerinfo.com

The main function of female breasts is to produce milk. Each of your breasts has 15 to 20

sections, called lobes, that are arranged like the petals of treatments are.

http://www.onlinebreastcancerinfo.com/importantfacts.html


Do you about breast cancer, do you know about seriousness of cancer .

Regards

http://www.onlinebreastcancerinfo.com

 

 


#421 From: "saditop" <saditop@...>
Date: Tue Jun 3, 2008 5:00 am
Subject: ! Cancer is found life taker
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Dear Members,

 

Each year, more than 5,000 women in Michigan discover they have breast cancer. In fact, http://www.onlinebreastcancerinfo.com

one out of every 10 women will develop breast cancer at some time in her life. After initial treatment, most of these women are able to continue living normal, productive lives. This booklet will help you better understand breast cancer.

 

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Do you about breast cancer, do you know about seriousness of cancer.

 

Regards

 

http://www.onlinebreastcancerinfo.com


#420 From: "doctorbrayden" <doctorbrayden@...>
Date: Tue May 27, 2008 5:45 am
Subject: HealthChapter.com - Social Network of People who have Similar Health Problems
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Hi,

HealthChapter.com ( http://healthchapter.com ) is a health based
social network of people sharing their disease experiences, treatment
options, knowledge and giving support to other people suffering from
similar health problems. Its a place to talk about how to live well
with disease, ask questions, share information about what is working
for you, get sympathy, exchange ideas, request and recommend the best
doctors, support and friendship from other patients suffering from the
same disease.

Join now at http://healthchapter.com/main/authorization/signUp

#419 From: "girlalsblog" <girlalsblog@...>
Date: Mon May 26, 2008 12:29 pm
Subject: You have 1 new message!
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#418 From: "leen.meen" <leen.meen@...>
Date: Sat May 24, 2008 2:10 pm
Subject: Trendy Used Laptops
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#417 From: "ken.jeen" <ken.jeen@...>
Date: Sat May 24, 2008 11:48 am
Subject: Trendy Used Laptops.
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#416 From: "girlkcrider" <girlkcrider@...>
Date: Thu May 1, 2008 2:55 pm
Subject: I have added you to my friends network today!
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#415 From: "girlfkblog" <girlfkblog@...>
Date: Sat Apr 19, 2008 7:19 pm
Subject: You have 1 new message!
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#414 From: "matchbnxfriends" <matchbnxfriends@...>
Date: Wed Mar 12, 2008 3:07 pm
Subject: You have received a NEW friend request!
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#413 From: "matchbnxfriends" <matchbnxfriends@...>
Date: Wed Mar 12, 2008 3:07 pm
Subject: You have received a NEW friend request!
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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!
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#411 From: "health80" <health80@...>
Date: Wed Feb 13, 2008 3:38 pm
Subject: Health and Wellness
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Messages 411 - 440 of 456   Newest  |  < Newer  |  Older >  |  Oldest
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