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Bittersweet Nectar – The Journey of a Mom and Her Son

By Jaime Bailey (Eli’s mom)

[NFOSD note – Jaime shares the 5 most helpful tips for families experiencing a similar experience at the bottom of this article.]

The NFOSD shared my son’s story with you recently; I thought it might be helpful to others if I shared my story.  My beautiful, energetic, happy, 2 year old baby boy, the joy of our life, has severe dysphagia.  I know there are lots of other mothers out there just like me.  We are not alone!  Raising the awareness of swallowing disorders is a small step that can help millions.

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Jack is Back! Rockstar, Business Owner and Author – He has Dysphagia

On March 24, 2012, Jack Eadon, along with his Team Jack walked the 6th Annual ABI Walk for Brain Injury Awareness at Huntington Beach in California. Jack is an incredible individual with an amazing story.

Jack is well aware of surgical injury. Since August, 2010, his fifth and final surgery, he has been unable to swallow and is tube fed. Diagnosed at an early age in 1978, Jack had 4 surgeries before his epidermoid brain tumor was completely excised in 2010. His battle with the epidermoid brain tumor has been challenging, yet he remains hopeful and determined.

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Eli: A Beautiful Thriving 2 Year Old… with Dysphagia

This story is about Eli, a bright, energetic, angel of a boy ready to take on the world. Unfortunately, Eli has been suffering from dysphagia his entire life. The rigors of set feeding schedules, uncomfortable and strenuous nutrition intake, social isolation, and emotional heartache caused by having a son with dysphagia have put a tremendous strain on his entire family and their extended social and employment infrastructure.

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Swallowing versus Feeding Disorders in Children

The NFOSD team is constantly on the lookout for useful news articles. North Shore Pediatric Therapy posted a website article on Swallowing Disorders vs. Feeding Disorders in Children on October 16, 2012. The article was written by Gretchen Olson, SLP.

We field questions almost weekly from mothers who have young children with Dysphagia. We recognize a pattern of similar characteristics from these frequent contacts. The young child has generally been seen by multiple doctors or therapists over a period of a few years and there is no definitive diagnosis, physical abnormality, or known “reason” why the child is unable to successfully eat. In addition, the amount of time and energy exerted by the mother is draining to the point of near hopelessness.

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Sonia Blue Profile

In 2003 I had a divorce, brain surgery and resulting DYSPHAGIA (inability or difficulty swallowing,) for six years I was fed by a stomach-tube ONLY! Many of us are not thankful for the intricate and instantaneous processes our body routinely performs because unless you are unusually grateful by nature, you don’t spend your waking moments giving thanks for your waking moments. You’re too busy working, doing the laundry, fighting with your spouse and wondering when you’re going to have sex again.

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