You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Our Babe and her Pierre Robin & Cleft
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One Family's story:
Our Babe and her Pierre Robin and cleft.
I have read several post recently inquiring about PR (Pierre Robin) and some of the problems that can come with it. I will tell you about our situation and see if that can help.
Amanda Marie was born 9-18-95 9lbs. 7oz. and 2 weeks early (very problematic pregnancy). She came into this world with Pierre Robin and cleft of hard and soft palate (palate shaped like an upside down Y). We were very fortunate that all of her issues were due to her position in utero. And none of them posed any problems after hospital discharge at 7 days old. She has eaten (breast milk) well (Nuk nipple with large slice) and had no breathing problems at all (thank you, Lord). I pumped for 10-1/2 months; had over 9 gallons frozen when I quit so she was on my milk until she was 15 months old. We went through palate repair at 10 months, 3 weeks of age and the surgery was a huge success! Her hearing is as acute as mine (poor thing ...we can hear a bat break wind at 1000 feet up!). Mom and Dad have worked extremely hard at speech with her and it has paid off. At 23 months her speech was evaluated at an advanced 4 year old level (yeah Amanda!). She is now just shy of her 3rd birthday and doing incredibly well. She is 40 inches tall, wears size 4 clothes and size 10 shoes. Boy is she a big girl!! She has even been potty trained for almost 3 months now. How on earth did I get so lucky?!?!
Sorry for bragging so much. She makes us SO proud! I hope I helped with some of the questions that were asked. If I can be of any further help. Please feel free to e-mail for my phone number.
My best to you and yours.
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