New and a Question

Children and adults with cleft lip and/or palate issues

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Postby bluepoohdaddy » Fri Apr 06, 2007 9:27 pm

Greetings,

My wife and are happily raising our 5 month old baby boy. He was born with a unilateral cleft lip and a bilateral cleft palate. One side is complete through the gumline. We just had his first surgery on Wed, 4/4/07 and he is recovering and well, making progress.

I myself was born with a complete bilateral cleft lip and a complete bilateral cleft palate. So I can understand what my son is going through, but I can't remember a lot about the care that was given to me. Liquid and puree diets aside. My question is anyone have any tips for feeding and comfort? Our surgeon has said we can still use his haberman bottles, but I was just wondering if anyone had any tips on easing his feeding time. Thanks, Dave.
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Postby gc0447 » Sat Apr 07, 2007 12:32 am

Dear Dave,

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

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

I'm happy your son's surgery is over and that he is recovering well. God bless him. I wish him a speedy recovery. I'm sure things will work out wonderful for him.

Also, you mentioned that you were born with a Cleft deformity as well. I wish the best for you too.

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

I wish you all the best.

Sincerely,

Georgette Couvall
georgettecouvall@hotmail.com (Email)
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Postby bluepoohdaddy » Sun Apr 08, 2007 10:59 pm

Thank you!! Davey still seems to be in pain every now and then, and he's eating a lot less at the moment, but he seems to be getting back to his normal self. He loves to cup his hands (almost in prayer fashion) and stick them in his mouth, as well as flipping over onto his tummy to sleep. With any luck he'll be doing those soon. I hate those stints on his arm. (I hated them when I had them put on me.)

Anyway, thanks!

Dave
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Postby gc0447 » Sun Apr 08, 2007 11:07 pm

Dear Dave,

Hello again. How are you? I'm glad your son is doing well. Again, I wish the best for him.

I'm from Illinois. How about you?

I wish the best for all of you.

Sincerely,

Georgette Couvall
http://worldcf.org/index.php?option=com ... 24&Itemid= 39 (Craniofacial anomalies)
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Postby heather » Mon Apr 16, 2007 2:35 pm

My son, who is 5 months old, was also born with unilateral lip and bilateral palate. His right side is complete through the gum and his left side is half way. I am in the process of introducing the sippy cup. His spoon feedings are some what difficult. He used to scream bloody murder, almost like he was in pain when he was eating. I asked the surgeon and the feeding specialist about it and I was told that no matter how much he hated it, I should still keep feeding with the spoon. I did find that it was a little easier for him to eat if I put the food on the side that didn't have the complete cleft, his left side. Do you know what I mean? It took a lot of patience, but he did eventually calm down to eat. It's easier also if I don't wait until he's starving to feed him. He's much more calm. It has gotten much easier to feed him. Unfortunately, it's just a matter of waiting him out.
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Eyson Brentley Van Eycke
Born 11/8/06 UCL BCP
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