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Friday, October 24, 2014

NASPGHAN Conference

Mommy is on vacation. I haven't heard a feeding pump beep in 2 whole days. Do you know how long it's been since I went 2 days without hearing a feeding pump beep?! I don't. I miss my babies dearly (and my wonderful husband who isn't scared to be left home alone with 5 kids for 3 days) BUT I am where I need to be right now.


I had never heard of NASPGHAN until my Feeding Tube Awareness colleague, Traci, mentioned that she would be going to their conference in Atlanta. NASPGHAN=North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, by the way. We (FTA) deal primarily with the pediatric tube feeding population, so this conference is really the perfect opportunity to share our organization's purpose with the right demographic. We flew in early Thursday morning and have spent several hours in the last 2 days in our booth at the exhibit hall talking to hundreds of GI doctors, nurses, and dietitians. The response to FTA has been extremely positive. These clinicians want to do right by their patients. They are excited to see the resource that we have become for parents who need the kind of support that can only come from others who have been where they are. The Parent Guide that we released earlier this year has been very well received by the people we have talked to. I have also been talking with the reps from many of the companies that manufacture the products that all of us use to feed our children. They are also interested in hearing feedback from the people who use their products on a daily basis and they want to make things better for our children. I know that tube feeding feels lonely and can be discouraging. REALLY. I know it because I have lived it. What I have learned through my experiences working for FTA and talking with all of the providers and company reps that we have talked to is that they ARE listening, and they DO want good outcomes for the patients they serve! It doesn't always feel that way and the process can be very slow, but if we as parents and caregivers will be patient and persistent, we CAN help bring about positive changes that will impact the lives of the children we love so dearly and work so hard to take good care of. I was surprised and excited to see Raya's GI nurse in the exhibit hall today. I guess I have not done a very good job of explaining FTA to our local GI clinic because she had no idea that it existed or that I was involved in anything like this. It may sound silly but I am really enjoying what I am doing with FTA. I love the mission we have to spread positive awareness of tube feeding, and to help educate parents about tube feeding, as well as to help clinicians understand the challenges their patients will encounter with tube feeding in a home environment. I am so thankful to be involved in FTA and also extremely grateful for a husband that supports me in all of this. We have one more day at the conference and I'm looking forward to it!

3 comments:

  1. Hello! I would like to be able to subscribe to the website, I have been following it for about 1 and 1/2 years and I have no way of seing when new posts appear unless I check the blog frequently(which I am scared may make me seem like a stalker or something). If there's any way you could add one of those gadgets for subscriptions somewhere on the page, it would be great. I do realize you are very busy or you may not want to do this, it is just a polite suggestion.

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    1. If you scroll down (way, way down :) on the right hand side, there is a "followers" section. There's a button above that that says "join this site" and if you click that, you can subscribe to updates. I also just added an RSS feed link on the sidebar towards the top.

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    2. Omg I am such a dummy :))) Thanks so much for taking the time to help me out, that's so nice of you!

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