Last Monday Matt and I met with Kristy Kruger, a colleague of his here in Eugene whose 10 month old was born with a unilateral cleft lip and palate. Her son was one of the very first families to undergo the NAM procedure at Doernbecher. He has had his lip repair already and they are anticipating his palate repair surgery in August or soon after. It was really helpful to talk with a parent who has been through NAM. She talked about her son's reflux (also common with cleft palate babies), the weekly trips to Portland and life with the NAM. She warned us that sometimes babies get painful sores in their palate and the device needs to be readjusted. I've read about this from several other parents online too. She believes it was well worth it. It is true that her son's nose looks really good. We have a meeting with Dr. Garfinkle up at Doernbcher to hear the whole NAM presentation on Monday the 23rd. We are looking froward to getting some of our questions answered.
My friend Ginger shared this quote with me. It is her account of telling her 7 year old son Zeal about our baby, "Rohan's baby brother".
"I was showing Raphael(her husband) the site you mentioned, and Zeal walked up. He asked what we were looking at and we explained to him that Rohan's little brother had what was called a cleft palate. He very thoughtfully looked at the pictures, smiled gently and said, "yeah, cause human beings are all like part of a garden and we all grow different." and ran off to play."
Thank you for sharing that, Ginger!! Some of you with kids might find that inspiring as you broach the subject with them. You gotta check out Ginger's new book "Child of Wonder" at:
http://www.gingercarlson.com/Welcome.html
More later!
Megan
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what a beautiful thought! children have such a deep wisdom... we're so priviledged when they choose to offer us those little glimpses of it!
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