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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Thursday, March 15, 2012

Exciting Week!

Exciting things are happening around here. :) For starters, I am now an official Tubie Friends Surgeon. Tubie Friends is an organization that makes teddy bears with feeding tubes for children with feeding tubes. These stuffed animals provide comfort to children who, due to their medical conditions, often spend time in the hospital and undergo painful and scary procedures. They are provided free of charge to families who request them and can be fitted with feeding tubes as well as other medical devices (central lines, trach tubes, and oxygen cannulas). Once a request is submitted, the child is matched to a Tubie Friends Surgeon (TFS) who will make a Tubie Friend for that child. If the TFS is not in the same area as the child, the Tubie Friend is shipped to the child. I don't know exact numbers but this AMAZING organization has helped hundreds of children cope with their medical challenges by providing them with Tubie Friends. I'm SO excited to be a part of it!
If you know of a child who would benefit from a Tubie Friend, the request form can be found here.
Tubie Friends depends on donations to cover the cost of the Build-A-Bears, supplies, and shipping costs. If you would like to contribute to this wonderful cause, go to for more information.
And last but not least, be sure to "like" them on facebook!

(Note: Tubie Friends uses Kimberly-Clark/Mic-Key tubes. If you know a child who would prefer a bear with an AMT Mini-One button, please go to the AMT Mini Buddy page. They work exclusively with AMT and are doing wonderful things as well!)

The next exciting thing is that I have joined the administration team at the Feeding Tube Awareness Foundation. I've talked a lot about this organization before and really can't say enough good about it. For many, if not most parents, their own child's feeding tube is the first one they will ever see. The ins and outs of tube feeding is not common knowledge even among medical professionals. When Raya got her first feeding tube (an NG tube), the nurses at the hospital did an excellent job of teaching me how to place and care for the tube and I appreciated everything they taught me. The unfortunate thing about it was that despite their clinical knowledge of NG tubes, none of them had experience with caring for a tube fed child at home. Hospital life is drastically different than home life, and in the first few months, we did a lot of trial and error with Raya and her feeding tube. There was SO MUCH that I didn't know, and I didn't even know what questions to ask or who to ask them to. What I needed was practical knowledge from other parents, and that's what Feeding Tube Awareness is. Their facebook page is a priceless resource for parents of tube fed children as well as for adults who are tube fed. With over 5,300 people who have "liked" the page, there is always someone who can answer any question that a parent or tube fed adult may have about anything feeding tube related. I have met so many wonderful people with such amazing stories through the FTA facbook page. There is definitely a LOT that I still don't know, but I'm so grateful to have this opportunity to use what I have learned over the past 2+ years to help other people who are going through similar things and to continue my "education". :)

And because nobody likes a post with no pictures, here's one of Raya hogging the bean dip when we were out to dinner with my mom on Monday.
She likes tortilla chips and once she got a taste of the spicy bean dip full of onions, she wouldn't stay out of it. By the time we left, I had scooped out most of it and given her the bowl in a futile attempt to keep her from digging her spoon into my plate full of food. :) She ate the leftover bean dip during feeding therapy on Wednesday. This afternoon she said, "Mommy, ah-wah muh-BEANS!" and then threw a huge fit when I told her they were all gone. I may have to go back to the restaurant and buy more!

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