[00:00:00] Speaker A: Hi, everyone. This is Kyler from Feeding Matters. Coming to you on August 22 is the 2025 Feeding and Eating Psychology Summit. This year we're going deeper. We're hearing from more professionals. In fact, we're going to hear from all four domains of PFD, as well as the two domains from arfid. And we're going to look across the lifespan, starting with neonatology and going all the way to adulthood. Most importantly, we're highlighting the lived experience.
So if you want to come together with other professionals who are engaged and dedicated to serving families and who struggle to eat while hearing from those families directly, this is your opportunity. We'll see you on August 22nd.
[00:00:40] Speaker B: Presented by Feed Matters with host Jacqueline.
[00:00:45] Speaker C: Peterson and Dr. Haley Estrom.
Feeding Does Matter.
[00:00:53] Speaker B: Welcome to Feeding Does Matter. I'm Jacqueline Peterson, CEO of Feeding Matters with my co host, Dr. Haley Estrom. Haley, happy Friday. We're recording on a Friday today. How are you doing?
[00:01:07] Speaker D: I'm doing pretty well. Jacqueline, how are you?
[00:01:09] Speaker B: I'm doing. Doing. Doing. It's Friday. It's great in that sense.
[00:01:13] Speaker D: Yeah. What could be wrong? It's Friday.
[00:01:18] Speaker B: Well, it is my great pleasure to be able to introduce our guest today. He is someone who I have known for several years and have been inspired by for several years, and that is Garrett Barnes, who is a father to Lucy. And many, many, many of you out there know Lucy from so many of the videos that we've shared of Garrett and his family and Lucy's journey. And so, so excited to have Garrett here today to share his story. He's been a huge champion of Feeding Matters, a volunteer of Feeding Matters on the board of Feeding Me. Just so many things in terms of where we are today are because of Garrett. And so, Garrett, welcome. We're excited to have you today.
[00:02:02] Speaker C: Well, thank you, Jacqueline and Haley. Females means the world to our family.
And I'm excited to share how we found you guys and the progress that was done and where we are now in life.
[00:02:16] Speaker B: Yeah, wonderful. Well, and I think we can just start with that.
[00:02:20] Speaker C: Sure. Well, Lucy was born on 1111 11, and at about six months old, she wasn't doing the typical eating. She wasn't transitioning to solids or heavy formula. And the pediatrician said, just wait and see, she'll get the hang of it.
And a year went by and she still wasn't doing it.
And so at a year old, she was hospitalized for rsv.
It's a big problem. I'm in Salt Lake City, Utah. The air quality is bad as you can hear from my hoarse voice today. But she was hospitalized for RSV and they placed an NG tube and we thought, okay, no big deal, we'll use the NG tube to get her through this illness.
Went home on the NG tube and six months later, she was still just taking bolus feeds by NG tube. And it got to be so much because replacing the NG tube whenever it came out, as she tugged on it just got to be really traumatizing for all of us. So we met with our GI team and they placed the G tube. And we didn't think we were going to be on it for that long, but started doing feedings through the G tube and she was still vomiting. And so no progress made in feeding therapy at all. And one day, myself, I think it was me, it was a really hard day. I jumped on the Internet, found Feeding Matters somehow through a Google search.
This isn't an advertisement for Google, but I found Feeding Matters and called up. It was like late, late at night, like 8 o' clock, 9 o' clock at night, Arizona time.
And the person answering the phone spent about an hour with me, talking to me, and she told me, well, her daughter has a similar condition. And they tried this medicine and it stopped the vomiting so they could do feeding therapy.
Well, I immediately, the next week, made an appointment and we got Lucy on the similar medicine and the vomiting stopped. And once the vomiting stopped, I got back on the Internet, found a feeding therapist that I really grew to respect, Marsha Klein. And she took us on as a client and started the process of coaching us on the phone. We did a homemade blended diet because we didn't want formula, got us on the phone and did therapy over the phone for about four months.
And it got us to a place where there was no vomiting, nothing like that. And then we went to Arizona, spent five days in a hotel room doing nothing but intensive therapy. And it was like eight hours a day for five days. Started on Monday, no oral intake whatsoever. And by Friday we took Lucy to Indian restaurant in Arizona and she was taking like tikka masala with naan bread and eating it by mouth. And that was probably the most satisfying win we've ever had. And we came home and then we continued our journey into food exploration. Food, food sampling, you know, all these different colors and all these different styles of food textures.
And that was when she was about three years old, I think. And then time went on. Time went on and then about three. So she's 13 years old now. Holy cow. I have a teenager, she's 13 year old now, and about three years ago, she got enough oral intake where we were able to stop the tube feeds. And so we stopped the tube feeds for about three months, and she was totally oral, gaining weight, everything. And then three months after that, we removed the tube.
And I'll always remember she laid back on the couch, put her hand on our head, deflated the balloon, removed the tube, and we just put a band aid over it. And since then, that was three years ago. It's been just a win, win. She eats everything. She's gaining, she's active in soccer, Isaki and all of the things.
So, you know, while I'm obviously still emotional about the journey, I wouldn't have changed it or traded it for anything because of our connections, our relationship with feeding matters and now the ability to help other families that are just experiencing these things for the first time.
That was a really long answer to the intro question.
[00:07:09] Speaker B: No, Garrett. And that's okay. It's okay that it's a long answer. It's been a long journey. And there are. That was actually a short answer for such a long time. I thought it was actually long journey. And I know that so many of our parents and caregivers and families that are out there that are listening know that you're skipping over so many sleepless nights, so many challenges and so many appointments and insurance things and all the things that you all have endured in this journey.
[00:07:40] Speaker C: Yeah, probably the, the biggest challenge was it's like this in America, but especially in Utah. All the holidays are big families, you know, lots of food, potlucks, things like that. And the families, our family, my mom and my spouse's mom and dad, you know, couldn't understand. They were like, oh, just give her to us for the week. We'll get her eating.
And we'd get together for like Easter, Christmas, Thanksgiving, et cetera.
And Lucy would be done at the dinner table within like two or three minutes. And all of the cousins and relatives would say, why does she get to go play? And so getting them to understand what, what eating or feeding is like for Lucy was like an every month special event type deal. Because there was a birthday with 10 cousins. There was a birthday every month.
And that was, that was really challenging because we'd. We'd come home and cry together and think, you know, what are we, what are we doing wrong?
But I look at it in that it isn't what we were doing wrong. It's the feeding tube that was keeping her healthy so we could do everything right.
And I think, you know, Many, many people are struggling right now, and my heart is with you if you're just starting your feeding tube journey, but there is hope. And just know that they're not just picky eaters.
There is a reason they're not eating orally. And we have folks like Feeding Matters and therapists to help us through our journey. And just I would encourage you to remain hopeful.
[00:09:27] Speaker B: Thank you, Garrett. Because I think that's. You hit on something that a lot of our families struggle with, which is that tube decision that, like, oftentimes a feeding tube is almost like a threat sometimes. And we know it's not the solution for everybody, but it's a lifesaver for those that do need it.
And you all have a really long journey. In terms of Lucy switching from an NG tube to a G tube, do you want to tell us more about, like, your thoughts around, like, feeding tubes or for anyone worried about it who has been having that conversation with their provider and maybe that thought may be going through their head?
[00:10:07] Speaker C: Yeah. Well, the NG tube we thought was going to be temporary. We thought it was going to be for a week or two, but it got in the way because, you know, it's a tube going down your throat. And so it got in the way of being able to do anything. It also attracted a lot of attention and people staring and things like that.
But it was the solution at the time. If I were to do things differently, I wouldn't have waited the six months. I would have probably chosen to go on the G tube, which. It's an invasive surgery. So it was a big decision. But once we got on the G tube, you know, it was one obstruction removed. At the time, it felt like we were failing and giving up. But I look back at it now and, and that transition, when it came to her, like, mental ability and her, you know, confidence was really a life changer because when you have an NG tube with tegaderm and duoderm and all of that stuck to your face, it's. There's always, you know, irritation and it's in the way and you pull on it and it just. It was life limiting. And so it really opened up the.
The space to be able to do more things with the G tube. And so we were lucky. We didn't have the typical infections at the stoma site. The nd the. The tube set where it goes in the stomach. We didn't have any of that that we had to deal with.
We were lucky. But there is, you know, there's so many resources and products and things out there to deal with any. Any type situation.
[00:11:44] Speaker D: Yeah.
I think it can be highly individual for child and family. You know, how that trajectory of NG to conversion to a permanent tube would go.
It all depends on, you know, how the NG experience is going. And you have to kind of have that experience, experience with your child and your family to know and to really be able to make that decision.
You know, you have to have that time to be able to think about it and say, like, how is this going for us now?
And, you know, it. It's always easier in hindsight. Right. But at the time, you don't know. You never know if it's going to be like you didn't know going into it that you'd have it for six months or that she would have it for six months.
[00:12:38] Speaker C: Yeah. And.
[00:12:39] Speaker D: And that it would have been longer.
[00:12:41] Speaker C: Right. And another thing that comes to mind is, you know, with the ng, we'd have the feeding pump overnight, overnight feeds getting tangled in the, in the cords and the tubing and all that, or feeding the bed.
And then, you know, inevitably it starts beeping at 2am and the tubes come off and there's formula everywhere and just all of those things. So when we were able to switch to the G tube and then switch to a homemade blended D, which we did, like four bolus feeds a day, it was challenging, like when traveling and stuff, but it was. It took a level of pressure off.
[00:13:16] Speaker B: Yeah.
[00:13:17] Speaker D: When you, when you have the onion of the issues combined, like just if you can remove a couple layers of the onion or of the stack of things that you're having to manage, if you can take the things off their face and not have to re. Drop the.
[00:13:35] Speaker C: Because the, the tape and stuff on the face, you know, would, Would irritate the skin and that would lead to more problems. And I'll always remember the year after we got the G tube, we took a trip from Utah to California. And you know, halfway through the trip, realizing we needed to do a bolus feed, all of a sudden we're like finding hot water at gas stations to heat up the blend, rinsing out the tubes, the bolus or the syringes in like gas station bathrooms. And it was just quite the, Quite the journey. And, and we even had a school that we didn't end up choosing, but when she went to kindergarten, say, well, yeah, it's no problem. She's on a G tube, but you'll have to have an aide come and feed her in the bathroom.
And we thought, you know, no way.
It's a meal. It's a meal that deserves to be eaten at the table with other kids. And so we found a much better school that they did the tube feed at the lunchroom table with the other kids eating orally. And that was.
I just, I'm remembering that now for the first time in a long time. But that was, that was rough.
[00:14:54] Speaker B: And that's an experience that we've heard other families go through, too, is just the lack of understanding of what it even is. It is a meal. And kids eat meals differently.
And they, you know, feeding disorder diagnosis or even just feeding difference there.
[00:15:12] Speaker D: Why would that have to be in the bathroom?
[00:15:15] Speaker C: Who knows? Because it would be upsetting to the other kids.
It would be a distraction. That's what.
[00:15:23] Speaker D: It's food.
You don't want that in the bathroom.
[00:15:27] Speaker C: But we've made a lot of progress here in Utah.
There's a lot more awareness now, not just because of Lucy, just because of the work of Fitting Matters and the awareness campaigns and the legislation and the work that they've done. And so I'm hopeful for families now that they don't have to experience some of the discrimination, I would even call it, that we experienced because all those looks and saying, well, what's wrong with her? And, you know, she didn't have a medical diagnosis, so there was no why to our journey. It just is what it is.
[00:16:07] Speaker D: I, I, you know, we've been using the journey word and it's used very often, and I, I'm almost thinking that it should be called an odyssey.
I feel like it would carry.
[00:16:19] Speaker B: Oh, man, you're so right, Haley.
Because journey doesn't even do it justice for how challenging.
[00:16:26] Speaker D: It's a pleasant walk sometimes, but I think it should be.
[00:16:28] Speaker B: You're right.
[00:16:30] Speaker C: Yeah.
[00:16:31] Speaker B: You're scaling mountains and.
[00:16:33] Speaker D: Yeah.
And fighting beasts.
It.
If anyone were to be given a response to feeding their child something akin to that, you know, an aide will have to feed them in the bathroom or something like that. They should contact the Office of Civil Rights.
[00:16:53] Speaker C: Yeah.
[00:16:55] Speaker D: Just a note to our listeners.
[00:16:58] Speaker C: Yes, I totally agree. And, you know, different cultures have different ways that their societies interact with medical professionals. And I'm loud on boisterous. I stand up for my rights. But, you know, some people, if a doctor or a school or someone in authority tells them it has to be a certain way, they're taught not to question that. And I feel for those people because to have a kiddo that needs insurance coverage and the amount of supplies we need. I can't remember the last Number. But I think at one time, the average cost it. It took to support a kiddo on a tube was like $30,000 a year or something like that. I can't remember the exact number, but we were lucky in that our insurance came through with supplies and we could change the button regularly.
But back to my point is, you know, some people are taught to not question. And so to that point, when the school says you have to do this, a lot of people just accept it. When you're right, they don't have to.
[00:17:58] Speaker B: Well, and, Garrett, that actually is kind of where I wanted to head next with you, too, which was how much Feeding Matters support helps to try to empower families that do feel helpless. I think that conversation is really hard for families sometimes when they're trying to share that something's wrong.
What advice would you have for families who may be trying to speak to their physician and say that, like, I think you need to be paying attention to this issue.
Do you have any advice for families that may not be feeling heard by their medical professionals or.
[00:18:35] Speaker C: Yeah, you know, get to get connected with the power of. Of two, because really, that's an ear for you to have and someone to give their perspective on the situation. Second is go to the conferences. I mean, I don't know if you. Y' all still let non clinicians go to the conferences, but some of the biggest. Oh, some of my biggest bonds were made with other parents at the Feeding Matters conference. I remember some of those bonds and hearing their story, and I still am in connection with them. And so it's hard. It was emotional, but I think the value it has, if you can have the means to go to the conference, is incredibly valuable. And lastly, I would say, you know, Finnie Mather is guiding me on how to. To talk to my insurance provider was very valuable because they.
They. Feeding Matters knows the codes and the language and what it takes to be heard by insurance and to get things paid for. Because having a kiddo on a tube, like I said earlier, is very expensive. And that doesn't even count what insurance, you know, pays for that. That counts for all the other stuff, like our homemade blended diet, which was guided by Feeding Matters, was this perfect diet. You know, sardines and quinoa and rutabaga and beets, and all that blended up, and it sounds. It sounds gross. But it was the perfect diet, but also the most expensive diet when we have to shop for everything at organic food stores.
So I would say that the support groups with Feeding Matters and the advice, because Y' all. Feeding Matters have dealt with people across the world and. And know so many different stories or odysseys that you can, you know, tailor for certain people. Because every feeding tube kiddo is going to be different.
[00:20:27] Speaker B: That's so true. Every story is different. There's similarities that are strung throughout, but every story is so different.
[00:20:35] Speaker C: And there's no right. There's no right or wrong answer to the journey. I mean, everyone does the best they can do with what they have financially, social, economically, every. Everywhere on the spectrum, they might have comorbidities and other health problems they're dealing with with the tube.
So every single person should be looked at differently. And finding a physician, not being afraid to fire a doctor if they're not giving you the answers that you think your kiddo needs.
It's hard in smaller communities. Luckily, we have a major hospital in Children's Hospital here in Utah. Some of the smaller communities don't have that. And so there's the need to sometimes travel to the bigger hospitals and, you know, just do the best you can with what you're working with. And my advice would be to not. Don't be too hard on yourself because it's hard.
Just try to give yourself a little bit of grace.
[00:21:33] Speaker B: Grace is so what's needed for our families that are.
There are just words that I continue to hear every family share of feeling guilt, feeling like they're failing, feeling all of these things. And that I hope that our families can give themselves some grace and hopefully with us, they can have a little bit of space to get some answers or information or access to other things.
In that same vein, one of the things that we've noticed as we've grown up at Feeding Matters, too, is how much we need to kind of be paying attention to how our kids are growing up and how they even are feeling about this.
You know, Feeding Matters and PFD specifically was built around the parent child dyad, and that's especially for our infants and young children. But as our kids grow up, it's theirs to kind of own and theirs to kind of like they. It's their relationship with food. As you move forward, maybe talk to me a little bit about that transition for you all with Lucy in terms of, you know, having a tube and how she's felt about food versus how you might see her future. Look.
[00:22:49] Speaker C: I was. I was probably, you know, she. She's of the age now where she's a teenager. Oh, boy. And she is a teenager, and she is proud of the fact that she can eat.
She Loves to eat.
When she got the tube out, at first we thought, okay, do we need plastic surgery to handle the scar? Things like that. And within a couple weeks she was wearing crop tops and bikinis and just like owning that part of her, which I was very proud of. I was surprised by it because we, you know, she was in ballet at the time. So there's all these body image things that help to do with, with especially young girls. Well, young boys too. It's not, it's not gender specific, but things that we have to be careful of. And even today I'm very cautious of, you know, comments that are made around my kids. We have twins that are full oral eaters from the day they were born.
But you know, just being conscious of, you know, the damage we can do when it comes to eating and eating habits. But she's proud of it. She owns it. She is strong and confident and we believe that's because of not only the medical folks, but Feeding Matters giving, giving us the tools. I'll always remember at a conference that I went to early on, I went to dinner with Shannon Goldwater, the founder of Feeding Matters. And she of course has but had triplets on tubes. Oh my gosh, I can't even imagine. But the advice she gave me as, as a parent to advocate for my kids rights really, really helped me and I attribute a lot of that to the confidence that Lucy has now for, from the advice that Shannon gave me.
[00:24:43] Speaker B: Oh, I love that carrot. I know Shannon will love that too.
She is truly a powerful advocate and that like has influenced all of us to be advocates too.
My next question is a little bit about kind of your own journey. We know how just traumatic, oftentimes the odyssey is of a feeding journey and we know that that often kind of maybe stays with someone even if a kid has kind of moved past it and you're in that critical space of that of like you still have all the memories that you may not remember. How are you coping with that today? In today's world, lots of therapy.
[00:25:34] Speaker C: All kidding aside, it's a form of ptsd.
[00:25:38] Speaker B: Yeah.
[00:25:38] Speaker C: So like, you know, if one of my twins would fall or scrape their knee, it's like, okay, get up, you'll be fine. But if Lucy does, my mind always goes back to, oh no, this is going to trigger a vom. A cyclical vomiting situation. This is going to set her back. And even today, all these years later, I still am working through those feelings of it's traumatic, you know, and it is a, it is a disorder that you know, I'm having to work out for myself to be, to, to let go of, because she deserved that, deserves that from me. And I'll, I'll still catch myself, you know, even as recently as this week, catch myself after dinner saying, oh, can you have one more bite?
And the, the look that comes across her face when I say that just breaks my heart. And the moment the words start to leave my mouth, I just want to suck them back in because, you know, a quote unquote normal oral eating kid will have some days where they don't like eat anything and some days where they chow down. But yet for me, unfortunately, I'm still counting the bites.
[00:26:55] Speaker B: I was going to say you've got a running calculator in your head and it's. That hangs above you still.
[00:27:01] Speaker C: Yeah. And even like a calorie calculator, because that's what we did on the tube, you know, you're counting every calorie, you're counting every vomit, you're counting every poop, you're counting everything.
And when I said that just last week, you know, can you just have another bite? I, yeah, that was hard.
[00:27:20] Speaker B: I hope you're giving yourself some grace in that too.
[00:27:25] Speaker C: Yeah, I need to work on that.
But it's only good news, you know, she's, because of that journey, she's a strong soccer player. Like I said, she's a goalie on the ice at ice hockey.
[00:27:38] Speaker B: She like does it all.
[00:27:39] Speaker C: Yeah, she, she, she, she does those really dangerous, like, not dangerous but like emergency room ready sports. Like get, get, get ready to be hurt. Because it's not a matter of when you'll break your nose or if you break your nose. It's a matter of when you break your nose.
But you know, she's, she's living the best life as a 13 year old.
[00:28:01] Speaker B: That's so wild to go from NG tube to ready to break your nose in ice hockey.
[00:28:08] Speaker C: Yeah, she, she, she's a champ.
[00:28:12] Speaker B: Yeah. Well, that is so amazing to hear and I know so many people have like watched Lucy from when you've shared about her when she was so young to when you guys shared about her a few years ago and the, just the, the world that you all have built together around this and being able to still acknowledge the past but move on from the past too, in some of the things that you're still coping with. We are always trying to like be there for families. What do you feel like you might need from us in terms of support or what, what are ways that we still can be there for you. Because I think that's what I worry about a lot with like our families that, like, once you're in the feeding matters family, you're kind of in and we want to support you with whatever that looks like and how that changes because that changes over time.
[00:28:58] Speaker C: Yeah, that's a really good question. And I, I have a specific answer for it. So I would say, you know, some. So. So she was off the tube at 10 years old and then she transitioned and now is a young lady, a teenager. What is that transition, the puberty, the adolescence? What does that look like when you've been through what you've been through, when you do have a scar, when you are still sort of in the back of your mind worrying about how much, how much she's eating or the variety she's eating? So some sort of support for people that have transitioned off the tube and are going through puberty and are going through, you know, social pressures, things like that, that, that would really be valuable. And I think maybe even if you're not on the tube, transitioning a kid, a kiddo through puberty, we all need some support. But there's that added level of, you.
[00:29:55] Speaker B: Know, it's different in a feeding space.
[00:29:58] Speaker C: Yeah. So that would be my answer.
[00:30:00] Speaker B: Thanks, Carrot.
[00:30:02] Speaker D: So I, I had a question, but now I'm wondering if that was maybe, would maybe be the same answer. But I was wondering if, if you could design a research study or if you had to, if you were able to choose a research topic, what would you want the study to be about?
Or feeding?
[00:30:20] Speaker C: Well, I'm not a researcher, but having experienced what we've experienced, you know, there's still no why, like, she never had a medical diagnosis. So maybe getting a subset of kiddos that don't have a serious medical condition but still won't eat and following them through like a 15 year, like, lifespan or journey to see, you know, just sort of document how it goes. At least when I was, when she was 8 and 9 years old, I had no hope of her ever eating.
So having some sort of study or data around the percentage of kids that transition from tube, off the tube, you know, their weight gain on the trajectory, what that's like, just to help people feel a little bit of hope. But these are all like long studies, right? I mean, that would have to be, that kind of study would have to be over the course of 15 years. But we're preparing for the next generation. You know, that would be of benefit for someone like Lucy that when she has kids if she has kids and they are on a G tube, that would be a study that she could look to.
[00:31:31] Speaker D: And she again, like she was doing all right until six months when it was the transition to solids or.
[00:31:43] Speaker C: Yeah, we had the kinds of.
We had the book. What's that book? It's not what to do when you're expecting. It's like the first year of life.
[00:31:52] Speaker D: Expect the first year.
[00:31:53] Speaker C: Yeah, we, we had a book burning party and burned that sucker because it was making us feel bad, sick and wrong. Every day we, we would read it.
[00:32:02] Speaker D: But I don't care for that one either.
[00:32:06] Speaker C: We do, because. Because that's. Yeah, it just makes you feel like a horrible parent.
But I would say, you know, when it got to be six months, we, looking back now, we saw the signs. Her volume intake was low. She was like on the 1 percentile of weight gain at the world visits. She wasn't getting the whole sucswa thing. Um, so I mean, looking back, I saw the signs, but in the moment, we had nothing else to compare it to.
When we had the twins, it's all of a sudden, oh, all of a sudden there's baby food all over your high chair and the walls and your head and the dog.
This is what normal oriole eating.
[00:32:46] Speaker D: This is different. Okay.
[00:32:47] Speaker C: Yeah, yeah. Because all of a sudden for them there's food everywhere. And we hadn't experienced that with Lucy. It was a very sterile environment.
So yeah, looking back, I have a lot of answers and just really feel for those parents that you might have a six month old year old and you're just getting those hard conversations about having to get a tube if it's necessary. Your kiddo's not gaining weight. I just, I want to be there for them and through storytelling and through generous donors so that feeding mothers can do the work that they do. And there's hope for all those families.
[00:33:25] Speaker B: Yeah, definitely. Garrett. Well, thanks for your vulnerability and for sharing your story, for sharing Lucy's story, for sharing your family story.
It's just really helpful for others to know they're not alone. To see how this looks for every family is so different and how they experience it.
And yet there's those threads of similarity.
So just appreciate you. Is there anything that you didn't get to share today that you want to share today? That's always question before our last question.
[00:34:00] Speaker C: No, I just, I feel, you know, like I said earlier, being very careful, the words now, especially as she's 13, you know, how about one more bite that sets us down this rabbit Hole of emotions and experiences and she feeling bad about herself. So as hard as it is as a parent, learning to watch the words coming out of my mouth is really important to this day. And also, you know, we were lucky we had good insurance, but there's families out there that their insurance only covers like one G tube every six months or, you know, three bags a month. And they're washing the bags out because that's all they can do. So I would say, you know, to those of you listening that have the means or, or are donors or supporters of Feeding Matter, please give. Because not everyone has gold star insurance or lives in a community that understands and they need all the scholarship support, the funding, and everything else that comes along with having a kiddo on a feeding journey. Just like, you know, we have, you know, support for people that are below the popular level, but there's not some sort of support system for kids that have a feeding tube yet. The struggles are just the same.
[00:35:20] Speaker B: Garrett, really appreciate you, really do appreciate.
[00:35:23] Speaker C: You for being here and we appreciate the work that you all are doing. I know I've grown up with Feeding Matters.
I've known you and the prior CEO and the team there and the dedication and the accomplishments that you've done in getting this recognized as a diagnosis and getting a billing code through your researchers and your consortiums has just meant the world to us as we've seen. As we've seen the world, because it really is an international organization, really become to a higher level of awareness when it comes to pediatric feeding disorders. And I'm just excited to see where we go next.
[00:36:03] Speaker B: Yeah, thanks. We are. We need everybody to, you know, help us get there. And you're like such a pivotal piece to that too.
[00:36:12] Speaker D: It's.
[00:36:13] Speaker B: It's just there's. It's just. It almost seems like how do people not know how important this is or that like, this is such a thing? Like, I feel like we are continuously pushing something up a mountain and we haven't yet crossed the, like, the awareness tipping point or the awareness. There's still so much not there yet. We're still not there yet. But I guess that what, what the silver lining for me on that is like, that allows us to build something with everybody in every mind and like every experience and perspective involved. And that's not always the case when other, you know, diagnoses or other things are happening. Like, it's not always been the patient and the family lived experience at the included in the research, which is kind of what. Why. What we were telling you earlier about why this podcast exists. And so I guess that does lead me to, like, our question if you, you know, I know you said you didn't do researchers, but you've, you've been basically, since you're a caregiver to Lucy, you have to go through so many things and you see the interaction with the healthcare system and you see all of this. What are some of the barriers and solutions, do you think, to research being patient and family centered? We know that there's so much research that needs to happen in this field. It is an emerging field and we're intersecting with other fields like the eating disorder field. And so how can researchers learn from families and what are those barriers or potential solutions?
[00:37:43] Speaker C: I would say, at least for us, getting all the clinicians and all the players in a seat at the table has been really hard. You know, getting the ot, the st, the gi, the dietitian, the therapist, just because the way our insurance system works, it's so impossible to get even an hour long meeting to all do a case conference on Lucy. And we, we still have never had that. We've had to be the relayer of information to all the different disciplines. And so if, if there's one thing I would really want to see is, you know, continue the work to get everyone at the table. And I know I've been a part of some Feeding Matters meetings where there are GI doctors and surgeons and occupational therapists, dietitians, all sitting at the same table. And when that happens, the sparks start to fly because everyone has their lens on and can view the situation from their scope of practice. And that's really what I think needs to happen.
Unfortunately, our healthcare system just isn't really set up for that.
[00:38:51] Speaker B: Well, you're so right. It's like, it's like kind of like the pro and the con. Like it's such a complex condition that needs so many different perspectives, but the challenge of it is it's such a complex condition and needs so many different perspectives.
Well, that is our time. Garrett, thank you so much for being the champion and advocate that you are and the father and husband that you are.
We really appreciate it and we will see everybody next week. Thank you. Bye.
[00:39:21] Speaker C: Thanks you all. I appreciate your time.
Bye everyone.
[00:39:24] Speaker E: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need. Through our Power of Two parent to parent mentoring program.
Parents in need of support are matched with one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with pediatric feeding Disorder or pfd, as well as avoidant restrictive food intake disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website.
A family coach will make contact via email first and then by phone or text message, typically within two to three days.
For more information, please contact us at 623-242-5234, extension 306 or
[email protected] you are not alone.
