Today’s Topic: Outreach, what are you doing to doing to spread awareness?
In addition to our daily posts, Tuesday, we had the opportunity to visit our local news station to share our story. If you missed that, check here.
I have to say that I absolutely did not expect the response we have received. My goal was to help promote Feeding Tube Awareness, and while we seem to have accomplished that, it seems to have meant so much more than that! I wanted to share our story so that whenever we feed Braxton in public, we could do so without the ugly glares from people wondering what the heck we were doing. None of it was for fame or any kind of notoriety. Since the newscast aired, we had almost 800 views that day and days later we are still getting quite a few. A number of organizations also shared the story on Facebook, so we received much more coverage than just locally. I’ve received countless e-mails and facebook messages from families thanking us for sharing our story, thanking us for giving kids like theirs a voice, thanking the news station for putting our story on in the first place, thanking us for giving them hope, for inspiring them to continue on their journey. Needless to say, we have been deeply moved by the response. This is all so much more than we ever expected. I honestly don’t think of us as doing anything extraordinary. I feel like most parents would rise to the challenge and do whatever it takes for their kids. But if by us living our “normal” life brings you any kind of hope or inspiration, I’m greatly humbled and glad that our story could be that for you.
A couple days after our news interview, I was contacted by an online publication in the UK to do an interview for their site, Success Circuit, which shares inspirational stories from all over. You can see that interview here: Braxton’s Journey – A Story of Young Bravery Many thanks to Michelle of Success Circuit for contacting us for the interview, and working quickly to have it published on their site.
We have had quite the journey thus far with many ups and downs. We’ve been physically, emotionally, and spiritually broken. Somewhere along the way, something changed. We gained acceptance of our situation and learned how to make the best of it. All you can do is take it day by day. Don’t get so consumed with the future that you forget to live in the present. Thank YOU all for reaching out to us and sharing your own stories with us. Thank you for showing interest in our story, I hope you continue with us on this journey. Never lose hope. And remember that you are not alone.
I promised a Q&A blog today, so here are a few questions we’ve received this week:
- How long will Braxton need the feeding tube? Honestly, we don’t know. Braxton was doing so well eating by mouth and just regressed when he got pneumonia and started vomiting every feed. It’s been about 5 months since then and we are starting to see some progress with oral feeding, but certainly not enough to remove the tube. As long as Braxton is happy, healthy and growing we are glad to have him keep the tube. We are actively working with a fantastic speech therapist, and I’m confident he’ll get there one day, I just have no clue when that is.
- Are there any activities he has to avoid because of the tube? NOPE! He can do anything within his abilities. We either remove the extension tubing or tuck it in his shirt so it doesn’t get caught on anything while he is crawling around, but there really are no limits because of the feeding tube.
- How often do you change the button? The G-Tube has to grow with Braxton. We follow-up with his pediatric surgeon about 3 months after we change to a new button. In the beginning, we changed sizes quite a bit because he was growing so quickly. Now, we’ve had the same size for about 6 months. As he gains weight the button needs to be changed. The length of the stoma is the only thing that changes. The doctor orders us a new button with a longer stoma so that it reaches all the way to his stomach.
- Do you change it yourself? We do actually. The Mic-Key button can easily be changed at home. The next time we have to do a button change, I’ll be sure to make a video and share it with you. The first time we had to put the button in was pretty scary because we pulled it out 😦 The good thing was that we got it out of the way early so we learned what needed to be done.
- How do you make his food? I need to do a video for this too. Since we switched to the blended diet, we are now able to feed him real food. I was using pureed baby foods at first and still do, but I’ve also started to buy regular chicken and beef, boil it and then puree it in our blender. I freeze the meats in ice cube trays and then put the cubes in freezer bags until I need them. I do the same with fruits and veggies. For our other posts on the blended diet, click here.
- Does Aileen help you? One of Aileen’s hopes was to feed Braxton with a bottle. That’s the first thing she wanted to do when I told her I was pregnant. When Braxton came home on the feeding tube, we had to have a different conversation. I explained to her that Braxton needed a special way to eat and we found other ways for her to help. At first, she helped me pour milk in to the feeding bag, later I taught her what to push on the pump so she learned to start it and knew how to stop it when it started beeping. Now, I do let her help with the syringe feeds, but ONLY under my supervision. I definitely don’t expect her to feed him all by herself. It has been quite the balancing act this whole time finding ways to keep her involved so she doesn’t feel left out since Braxton requires so much of our time. She’s been awesome though.
- Was it hard to learn how to use the feeding tube? Surprisingly, no. It was just a lot of information. There is a steep learning curve when it comes to tube feeding, but it’s something that has to be done often, so the repetition really helps you learn what needs to be done. We have been able to teach our parents and even my grandparents!
I think that’s all the questions we received, I know we’ve put a lot of information out this week, so I thank you for reading! If you do have any other questions about feeding Braxton, we’re happy to answer. Just ask!
Tomorrow is the last day! Sometimes You Just Have to Laugh: Tubie humor
For all Feeding Tube Awareness Posts, click here!