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
