congenital isolated pharyngeal dysfunction....

in family •  7 years ago 

2 years ago my daughter was diagnosed with something called congenital isolated pharyngeal dysfunction. Its very rare and not many cases found or information found online. I wanted to post this to see if anyone out there knows someone or has a child with this rare dysfunction or something similar. This dysfunction prevents her from being able to swallow solids and probably has to live with her feeding button ( also known as a Mic-Key) for the rest of her life. She is a very independent baby and very though...toughest baby i know ..she even beats up her older sister..lol. If anyone out there has gone or is going through this with their child or a family member...what tips or advice can you give my wife and I would.

thank you,
Luis
IMG_20170224_192341.JPG

family kids love advice
7 years ago by

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      ·  7 years ago 

    I'll repost so my friends can see your request. Your daughter is beautiful🦋

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      ·  7 years ago 

    thank you so much!

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      ·  7 years ago 

    You are welcome🐬

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        ·  7 years ago 

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            ·  7 years ago 

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