Sunday, February 6, 2011

Day 1 - Feeding Tube Awareness Week

I am so happy to be part of Feeding Tube Awareness Week.  A lot of parents and adults with feeding tubes are working together to help spread positive awareness about tube feeding. 

Our goal for this week is to spread awareness and reach as many people as possible.  We want you to know that a feeding tube is a life saving medical device and many of our children would not be here today if it weren't for their feeding tube. Little Allie is alive because of her tube.

It's video launch day - check out our Feeding Tube Awareness video at the bottom of this post.

The topic for today is - Why does your child have a feeding tube?

Our story starts out simple, Allie has a feeding tube because she does not eat enough orally to gain or even maintain her weight.  Since birth, Allie hasn't eaten enough to grow and thrive.  At a year old, we started seeing specialist at the Children's Hospital of Wisconsin and they immediately starting to run tests to try and figure out why our Allie wouldn't eat orally.  They ran tests for months and everything was coming back normal.  At one point Allie was so malnourished that she stopped talking completely and she had such bad muscle deterioration she couldn't walk straight and was continually falling down.  On September 26th, 2009, she had a brain MRI because our doctor thought it was possible she had a slow growing brain tumor.  Thankfully, Allie's MRI was clear and at this point, the doctors realized that Allie's overall health was very poor and something needed to be done or she would starve to death.  Allie was put on appetite enhancer medication and we enrolled her in a week long outpatient intense feeding intervention at CHW.  Neither the appetite enhancers or the feeding intervention worked for her and she continued to avoid food.  In December 2009, I stood up and took a stand.  I requested Allie get a feeding tube.  She was slipping away from us mentally and physically.  Our little girl was starving to death.

Once her tube was placed and all complications were taken care of, Allie started growing like every other 2 year old.  Due to her significant speech delay, we enrolled her in speech therapy.  She still receives speech therapy today but has made great strides and is working her way towards catching up with her peers.

As of today, we still do not know why Allie doesn't eat orally.  There is a chance we may never know and that is okay.  The most important thing is that Allie is healthy and luckily, we are able to keep her healthy thanks to her feeding tube.

Thank you to everyone who is supporting Feeding Tube Awareness Week and our family.  Your support means so much to all of us!!!

Check out all the amazing children with feeding tubes..................

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