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2013 FTA Week: Day 6, Outreach

Today's topic is Outreach: Spread the Word!

How are you spreading the word about Feeding Tube Awareness Week? This is a great day to give a school presentation or tell docs, nurses and therapists about Feeding Tube Awareness Week and share information about it.

I really could split this topic into 2 posts but I don't want to so this will just be really long. If you've read the blog for any length of time, that should come as no surprise. Last year was our family's first Feeding Tube Awareness Week. I had come across FTA on facebook shortly after FTA Week in 2011, so we missed out on that one. Last year though, we were VERY excited. The older kids and I had decided that it would be fun for them to do short presentations about feeding tubes for their classes at school. I emailed their teachers a couple weeks in advance and they were completely on board with the idea. I put together a 3rd and 1st grade level version of the presentation, the kids practiced several times at home, and then did a FABULOUS job presenting for their classes. They are not the most outspoken kids by nature, but having the opportunity to speak in front of their classes about something unique that not many kids their age know about was a great way to boost their self-confidence. (Read about the presentations here.) Ashtyn's picture made it into the Oley Foundation's newsletter in their article recapping FTA Week, which was SO exciting for her! (Click here, it's on page 4.)

When the kids realized that FTA Week was coming up again, they couldn't wait to do their presentations again. Cole ended up changing his mind and decided not to but Ashtyn has been asking me for a month if she could do it for her class. This afternoon, after Raya's horrendous OT session, the little girls and I went to the school to help Ashtyn with her presentation. Kaida was really excited. Raya was just plain bushed from the aforementioned horrendous OT session, so she could have cared less. She's been really attached to Tubie-rina (her Tubie Friend) today for some reason, so they snuggled in her stroller while we waited for Ashtyn's class to come back from lunch.
The other 4th grade class walked past while we were waiting and several of the kids recognized the girls as Ashtyn's little sisters and told them how cute they are. One boy pointed at our "I ♥ a Tubie!" shirts and said, "Hey, I remember them! It was that tube thing!" He must have been in Ashtyn's class last year. :)

When the kids got to the classroom, I parked Raya in the back of the room and started going through things quickly with Ashtyn since we haven't really gotten a chance to practice this week. I had emailed her teacher the PowerPoint presentation so she pulled that up and had it ready to go on the smart board. Ashtyn had walked to the front of the classroom and I was just about to follow her when Raya said, "Mommy, my pants is getting wet!" I hurried to see what the problem was and sure enough, for the first time in probably 2 years, her pump bag had disconnected from the extension tube and everything that had been in her stomach was gushing out of the tube and into the stroller. Formula was running down the leg rest and pooling in the foot rest. Her jeans were drenched. If we had not been in a 4th grade classroom, seconds away from Ashtyn giving a presentation for which she needed my help, I would have been laughing hysterically at the irony of it. I clamped the tube, plugged it back in, wiped the Neocate+stomach off of my hands, and got the show on the road. Still snickering about it though. :)

Ashtyn did a fabulous job. The presentation started out with a VERY abbreviated version of how Raya ended up with a feeding tube. She then explained a little about NG, G, and GJ tubes as well as some of the reasons why people need feeding tubes. Then she talked about the different ways a G tube can be used (pump feeds, syringe feeds, in the backpack, on the IV pole, formula, blended food, etc.). She listed and answered a few of the frequently asked questions, like how long Raya will have her G tube and whether she can play & swim with the tube.
During the presentation, Kaida helped her by holding up whatever it was that she was talking about. Kaida LOVED it! I really didn't do Ashtyn justice this year because we hadn't practiced at all this week so she had to read everything off of the papers. They have a microphone in their classroom, which I thought was a nice touch. Ashtyn is not the most outspoken kid, and seeing her do a presentation like this with so much confidence is awesome. She answered a few of the questions her classmates asked but I had to step in and help when they got a little tougher.

Most of the questions that the kids had were similar to what was asked last year, but there were a few that really blew me away and made me SO glad that we did this presentation. The first one was a girl who asked, "Why did you want to tell the class about feeding tubes?" Ashtyn answered her first and said that we did it because we want people to understand it better. I thought that was a great answer. I expanded on that a little by telling them that it's important to our family that people understand that feeding tubes are not weird or gross (okay, maybe a little gross) and that they're nothing to be afraid of. I told them that now that they've learned about feeding tubes, they'll know if they ever meet someone who has one that the tube is no big deal.

The next question that made me really glad we had done the presentation was, "Is she contagious?" Wow! That's the thing I love about kids. If there's something on their mind, they're going to let you know. I was so glad that she asked this question because it's such a classic example of being intimidated or put off by a physical, outward sign of a disability. I explained that there was absolutely nothing contagious about feeding tubes and reiterated some of the reasons Ashtyn had gone over that would cause someone to need a feeding tube. I also went into a little more detail about the reasons Raya got one.

Another question that was new this year was, "Is it harder to take care of her because she has a feeding tube?" (Mind you, this was about an hour after a HORRENDOUS session with her OT and a very short feeding therapy session that involved nothing more than Raya eating "ice soup" just to help her calm down from the awful OT session, and immediately after her tube disconnected and filled the stroller with formula.) I laughed a little and told them that while Raya is very much like other kids in a lot of ways, the feeding tube definitely makes it harder to take care of her. I pointed out to them that when they're away from home and get hungry, their parents can just grab them something to eat at a restaurant or grocery store and they can actually eat it. With Raya, if we forget any of her equipment or her formula, we can't feed her.

All of the kids and their teacher were totally engaged in the discussion and asked a lot of really great questions, which was exactly our goal. Now they've seen it and now it won't seem so foreign to them if they ever meet someone with a tube. Mission accomplished.

Outreach Part II:
This year, I've also had the opportunity to do outreach on a much larger scale than elementary school. This has been one of the most exciting weeks I've had in a very long time. I don't think there could have possibly been a better way to kick off Feeding Tube Awareness Week than the way I did it this year. About 4 months ago, we (the staff of Feeding Tube Awareness) found out that our founder, Traci Nagy, was going to be receiving the Lyn Howard Nutrition Support Consumer Advocacy Award for her work in starting the Feeding Tube Awareness Foundation. Through what I KNOW is not a coincidence, the award was to be presented at a conference for medical professionals involved in nutrition (i.e. GI doctors, nurses, pharmacists, dietitians, etc.) and the conference was being held in Phoenix. This meant that I got to be Traci's "and guest" at the conference. Even more exciting, we found out that the wonderful folks at the Oley Foundation were going to be sharing their space with us in the exhibition hall during the conference. This was great news because we only recently became an official non-profit organization and are still looking for funding and sponsorship {hint, hint}.

Traci and I met up on Saturday afternoon to get our little display put together.
Hmmm...that picture makes it look tiny but really, we didn't care. We were just thrilled to be there and SO grateful to Oley for sharing their space with us and for promoting FTA Week along with us. They have such a great staff!

The rest of Saturday afternoon was spent at the Oley Foundation's regional conference. We missed the first part but got there in time to join in some wonderful roundtable discussions about enteral and parenteral feeding (parenteral=via IV). It was at this meeting that we had the pleasure of meeting Dr. Lyn Howard, who is the namesake of the consumer advocacy award that Traci was presented with. She is an incredible woman and I wish we could have had more time to visit with her.

The Oley meeting was our first taste of what our weekend was going to accomplish. It was the first time that I've been able to represent Feeding Tube Awareness in person. We sat at a table with a physician, dietitians, a woman who has been on TPN for 20 years and will be for the rest of her life, a man whose son has been on both TPN and tube feeds, and a representative of a local branch of a home health company. Now in the last 3 years, I've been asked a LOT of questions about Raya and her feeding tube, but this was the first time that I've had medical professionals recognize me as part of an actual organization with a valuable mission and purpose and ask questions with the intent of understanding what the experiences of a parent are like. It was a pretty awesome feeling, and that was just the beginning.

Saturday evening after the meeting was over, Traci and I met up with some local "tubie mommas" to have dinner and chat. It was fun to meet them and they loved the opportunity to get together with each other and to meet Traci.

Bright and early Sunday morning, we headed to the session where all of the awards were being presented. This is funny. When we had originally looked at the schedule of events and saw that the awards presentations were at 8:00 on Sunday morning, we thought for sure there would be no more than 20 people showing up. Who gets up that early on a Sunday morning just to watch a few people get some awards?? Well, apparently a LOT of people. About 1,500 people, actually. We walked into the room, which doesn't look big when you're looking at the doors from the hallway, and yeah, it was huge.
That is only HALF of the room and you can't see how wide it is in this picture. HUGE. We got there early enough that I snagged a front and center seat so that I could have a clear view when Traci got her award. As I sat and watched the other awards presented, I couldn't help but think about how amazing it is that in such a short time, what started out as nothing more than a whim has now become an organization with a following on facebook of just under 10,000 fans and a website that is a wealth of information and support for families and individuals with feeding tubes. There just aren't words for how great it is.

Then it was Traci's turn. As soon as I saw her picture pop up on the giant screen above the stage, my eyes filled with tears and I had to dig a kleenex out of my "I ♥ a Tubie" bag. She hadn't even come out on stage yet. Then she came out and I was caught somewhere between wanting to cheer for her and blubbering like a big cry baby.

Traci gave a short speech explaining what Feeding Tube Awareness Foundation is and what we do, and told the story of how it came about. As I listened to her, I realized that she was standing in front of a captive audience of 1,500 medical professionals who now know about FTA. That was a great feeling! She did a fabulous job. I was and am SO proud to be a part of an organization that is making such an impact on families all over the world, and proud of Traci for all of the hard work she has done to make it happen.

After the awards presentations were done, the keynote speaker, a professor from Harvard, gave a brief 45 minute overview of the Affordable Care Act, aka Obamacare. He said that when he teaches about ACA at Harvard, he spends 30 HOURS on it and still feels like he has only scratched the surface, so we got a VERY brief overview. I came away from his address with a couple of impressions. First, the news media REEEEALLLLLLY does a lousy job of presenting facts when it comes to anything...well, yeah, just anything. They put whatever spin they want to on things and people take it as gospel truth. Second, although there are parts of Obamacare that I don't necessarily agree with and don't understand how they will be fiscally possible, there is a lot of good in the act as well. Especially for families with ongoing medical expenses like our family. The thing that I really appreciated him pointing out was that just like other major government acts that have been passed in the past, this act WILL undergo massive changes over the coming years. The ACA as it stands today is not going to be the final deal, but it is a catalyst for major healthcare reform and even though it is not perfect, it is a huge step towards doing the right thing. And that's enough about that.

After the session ended, we made our way out of the ballroom and into the corridor, but not before stopping many times for people to shake Traci's hand and congratulate her. That continued throughout the weekend. I felt like I was walking around with a celebrity. :) The most exciting thing (for me) that happened the whole weekend was the impromptu meeting we had with the representatives from Moog, which is the company that manufactures the Infinity feeding pump that Traci and I both use. We stopped by their booth to chat, and as soon as we explained who we were and what our organization is, they pulled up chairs for us and we sat down and talked. On behalf of the thousands of people on FTA's facebook page, we told them every complaint we hear from parents about the Infinity pump. Bags leaking, bags breaking, pump alarms in the middle of the night for no reason, not getting any instructional materials with the pump (because apparently there is a whole packet that should be sent out with every pump...), and anything else we could think of. They LISTENED. Their product development rep took copious notes the whole time we were talking and then reviewed them with Traci when we were done to make sure he hadn't missed anything. We exchanged business cards and talked about possibly doing more product feedback in the future. I walked away from that "meeting" feeling like if we left and went home right then, it still would have been a successful weekend. Parents, they HEARD you and they were INTERESTED in the problems you have with their product! I hope other people will feel as good about that as I do.

We were able to open up a lot of dialogues with the companies that were in the exhibition hall. We talked to reps from Abbott Nutrition, Nestle' Nutrition, AMT, Kimberly-Clark/MicKey, Byram Healthcare, Nature's One, ThriveRx, Preferred Homecare, Mead Johnson Nutrition, Walgreens Infusion Services, and several others, as well as physicians, dietitians, and pharmacists. We tasted formula (and I'm sorry, Nestle' but the new Peptamen is actually not better tasting than the old Peptamen), and we even ate ice cream that was made out of chocolate flavored Ensure. With sprinkles on top. It was actually pretty good!

Sunday was a really, really exciting day. I can't even describe how great it feels to talk to all of these companies on behalf of thousands of other parents and feel like the reps are actually interested in what we have to say as the consumers. (most of them, anyway...) Monday was more of the same. We had more conversations, exchanged more business cards, and had our picture taken at the novelty photo booth:
There's a bit of a height difference between us. I had to squat down pretty low to get both of our faces in the picture. :)

This week has been exhausting but so very exciting at the same time. If you haven't already guessed that by the number of times that I've used the word "exciting." I have come away from this week feeling like speaking up DOES matter, no matter how big or small your audience. Who knows what the impact of this week will be. I can tell you that the FTA facebook page has grown by nearly 800 people in less than a week. That means that 800 more people have now at least heard the term "Feeding Tube Awareness." There are now 25 4th graders and a teacher who know more about feeding tubes than they ever have before. Who knows, maybe someday (heaven forbid) one of them will need one or have a child who needs one. They will have at least heard of it, and they will remember that it was presented in a positive way. 1,500 medical professionals have now heard about Feeding Tube Awareness Foundation and know that there is a large following on facebook where people who are dealing with tube feeding can find practical support for things beyond the pure medical aspects of tube feeding. Who knows what the impact of that will be. We will probably never know, but the important thing is that we keep spreading awareness in whatever ways we can. If you are the parent of a child with a feeding tube or if you have a feeding tube yourself, connect with others in your area. Find someone who has been doing it longer than you and see what you can learn from them. Find someone who is brand new and share your story with them so they know they're not alone. It DOES matter, and it DOES make a difference.

I also thought it was worth mentioning that this is my 500th post on this blog. I think today is a fitting day to have a milestone like that. I never imagined that the blog I started just so that Raya's medical stuff wasn't taking over our family blog anymore would ever be read by anybody but my mom. It still seems funny to me that anyone is interested in anything I have to say, but I'm so glad that this has been helpful for other people because it is certainly therapeutic for me to write it. To everyone who has ever left me a nice comment or sent me an email, thank you!

Comments

  1. This is so awesome. My son's dietitian was in phoenix and saw Traci's presentation and was really impressed. Because of FTA, myself and another tubie mama in our city have created a local Facebook group this week. We have support from our dietitian, Knox's speech therapist and OT to send us more local tubie families. We plan for it to be both a source of support and a playgroup for kids to get to know each mother.

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