Question for those with Clefts

Children and adults with cleft lip and/or palate issues

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Question for those with Clefts

Postby wcs40110 » Tue Nov 13, 2007 4:28 pm

I'm just wondering how it is when people mention it. I have a daughter with a cleft and quite often people will mention how so and so in their family or someone they know has one also. Often I want to ask about theirs but I'm afraid its like pointing out that someones nose is sideways. :shock: It doesn't bother me when people ask about her but I also have no idea what shes in for. Any ideas please feel free :)
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Postby gc0447 » Tue Nov 13, 2007 9:36 pm

For: "wcs40110":

Hello. My name is Georgette Couvall (Dr. Salyer's patient: http://www.worldcf.org). How are you? Welcome to the group. Here is my Personal Story link:

http://worldcf.org/index.php?option=com ... &Itemid=39 (Craniofacial anomalies)

I'm from Illinois. If you don't mind me asking, where are you from? Just wondered.

You should probably find people in your area (other parents who have children with Cranifoacial and Cleft Deformities) so that you and your child can meet other people who have been through the same thing that you are going through. It's a wonderful feeling to find out that you are not the only one in the world who has experienced this type of ordeal.

I wish the best for all of you.

Sincerely,

Georgette Couvall

http://www.networkforgood.org/pca/Perso ... aid=105613
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Postby wcs40110 » Wed Nov 14, 2007 4:02 pm

We're from Michigan. I don't think finding other children would be that difficult based solely on the customers I've come in contact with. Anyways, my name is Jennie and I am the proud mother of Dakota, 13 months old, unilateral partial cleft, small notch on gum. She has had one repair and isn't expecting any until shes 5 or so. Glad To be welcome and find other parents and those sharing a similar experience.
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Postby heather » Wed Nov 14, 2007 5:56 pm

Hello and welcome. My son Eyson was born November 2006 with unilateral cleft lip and bilateral cleft palate. He has had one surgery to correct his lip and we are nervously waiting for his palate surgery coming up in the next week and a half. I don't mind people asking about my son. His surgeon did an exceptionally good job with his repair. You can hardly even tell that he had a cleft. Anyway...welcome, it's so nice to have another person willing to talk. Heather and the Kids
Image
Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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Postby samjune79 » Wed Nov 14, 2007 6:32 pm

I was out with Kyle and an older man asked who did his surgery and then we started talking, I didn't find it rude. I think when we talk to one another we can relate and give info one might not have. I got to meet the older man's son who had BCLP and it made me feel good to see how good looking middle age man he turned into. I guess the only thing I don't like is when people who aren't directly associated with the person they know who has a cleft look at me (UCLP) or my son (BCLP) and say "you know there are a lot of advancements now" I just don't know what to say to that. It's not a question or a complement. Check out my MySpace page at the link below to see all his surgery pictures if you would like.
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