Feeding tubes and swallowing dysfunction

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Feeding tubes and swallowing dysfunction

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A swallowing dysfunction that is one of the universal challenges associated with CHARGE syndrome and many syndromes which are very similar to CHARGE syndrome. My son’s diagnosis came pretty soon after birth when he aspirated from drinking my milk, which basically means he wasn’t able to swallow it and the food actually went into his lungs. That’s what aspiration is. There are many, many things which can be done to aid oral multifunction, which can be done through the setting of occupational therapy. But for a lot of the children, they’re going to need a feeding tube. And it does feel very scary at first, and I went through all of those emotions, and desperately tried to fight him having a feeding tube. But the most important thing is to get your child home from hospital and to allow your child to grow. And actually the G-tube is the best way… the d-tube, the feeding tube, is the best way to get over that huge hurdle at the start. And my son has never had any issues in terms of his weight, because he has pretty monitored food intake. You just need to get past the regularity of feeding, the extra idea that you’ve got to carry around. There are some challenges, but it’s doable. And now he sits there and holds it himself.

Watch Video: Feeding tubes and swallowing dysfunction by Catherine Lacey Dodd, ...

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Catherine Lacey Dodd

Mom & Photographer

British born and living in Los Angeles, Catherine Lacey Dodd is the mother to Reuben Jack, age five, and Callum Andreas, age four. She’s a work at home mama, owner/photographer at Catherine Lacey Photography and creative writer. Reuben, whose name means, "behold a beloved son", has CHARGE syndrome. He has undergone 18 surgeries including two open heart and countless hospitalizations. Callum is his much longed for brother and his best friend. She created the blog, ReubenJackDodd, which tells her family’s journey through thought-provoking words juxtaposed with eye catching imagery and the sweet faces of her two little loves. 

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