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Riley say bye bye tube, hello food!

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Have you ever turned down ice cream? Have you ever been so anxious at the sight of food coming towards your mouth that you start breathing heavy and hide from it? No? Well, this is a day in the life of our Daughter Riley. To say that Riley's relationship with food and eating has been a traumatic roller coaster these past 19 months is an understatement.

 How did we get to this point? Since Riley was born, she has had severe reflux and would throw up after almost ever meal. At times both her nose and mouth had formula coming out, it's every parents nightmare! Riley was choking, her eyes would get wide as tears came out because she couldn’t breathe. Riley had been so traumatized from the violent episodes of throwing up that she would no longer take the bottle, she just would hysterically start to cry as soon as we grabbed her bottle.

We had to make one of the hardest decisions, which was to no longer attempt to feed her orally and June 2017 we scheduled her for surgery to have a feeding tube to be placed in her belly.

Riley is working hard to try to overcome the fear of eating . Most parents  would think that it is pretty cool to witness their child grabbing a cracker and trying to eat it themselves, but to us it is like watching the Patriots win the Super Bowl.  Riley is showing some interest in having food near her again but, she has a long way to go.

 Since Riley's meal times are on a set schedule and set amount each day, Riley has no concept of what it feels like to be hungry. There is a process where a child can safely experience hunger while providing opportunities to satisfy that hunger with eating by mouth, this is called Tube Weaning. 

What will your donation go to? There is a program called Spectrum Tube Weaning, that is willing to come to NH to help Riley in her own environment and learn  how to eat meals by mouth. This program is 10 days long and we will work with a feeding therapist 5 times a day to change the way Riley thinks about food.  Riley will safely experience hunger  while  having opportunities to learn how eating can satisfy hunger. There is a  96% success rate of getting children to not rely on the tube for their nutrition.

 The Program costs $20,000 and we will be paying for our therapists hotel, car rental and meals while she is here with Riley.

Unfortunately, this program is  not covered by insurance so Jay and I will need to pay out of pocket.

 We hope that you will help us on our journey of helping Riley overcome this huge milestone. I know that Riley will do what she always does and give her everything and in no time she will be eating by mouth daily. Thank you for reading Riley's story and for your consideration in helping Riley to say "bye bye tube….hello food!!"

Donations 

  • Jon Rioux
    • $100 
    • 5 yrs

Fundraising team: Riley Roo's gettin rid of that tube (3)

Kary Monahan
Organizer
Raised $14,100 from 114 donations
Merrimack, NH
Donna Monahan
Team member
Raised $30 from 1 donation
Bergeron family
Team member
This team raised $5,475 from 35 other donations.

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