Navigating Feeding Challenges with Down Syndrome

[00:00:00] Speaker A: Feeding Matters understands the significant financial difficulty. [00:00:03] Speaker B: That comes with supporting a loved one. [00:00:05] Speaker A: With pediatric feeding disorder, or PFD, and. [00:00:09] Speaker B: Avoidant restrictive food intake disorder, or ARFID. [00:00:13] Speaker A: Each fall, we open the Family Assistance Program. [00:00:17] Speaker B: Since 2019, we've awarded $40,000 to families throughout the United States. Applications for the 2025 cycle are currently being accepted and are due Friday, October 10th. [00:00:31] Speaker A: Feeding Matters will award $1,000 grants to 10 families. [00:00:36] Speaker B: Learn more and apply [email protected] Family Assistance. That's feedingmatters.org Family Assistance, presented by Feed. [00:00:53] Speaker A: Matters, with host Jacqueline Peterson and Dr. Haley Estrom. Feeding does Matter. [00:01:05] Speaker B: Hello, everyone. Welcome to Feeding Does Matter. I'm Jacqueline Peterson, CEO of Feeding Matters. [00:01:12] Speaker A: Hi. [00:01:12] Speaker B: And I'm Haley Estrom. I'm an associate professor in the School of Nursing at University of North Carolina at Wilmington. [00:01:20] Speaker A: How are you doing today, Jacqueline? [00:01:22] Speaker B: I'm doing pretty well. It's a Friday. Such a great way to end the week and really connect with our community. So I am excited for our guests today, we have a family story to share with all of you. In the sense of it, you are not alone. And there are so many families out there. And that's what we really hope to provide you with as a family member who is experiencing this. This. We know this journey can feel really lonely, and so we want to bring these stories to everybody so that you know that you're not alone in this and Feeding Matters is here to walk alongside you. So it's with great pleasure that I introduce you all to Talia Laughter who is a family of Feeding Matters and has even been on our family Advisory council as well for a few years. So, Talia, welcome. It's really great to have you. Thank you so much for coming on to share your story. [00:02:16] Speaker A: Hi. Thank you for having me. I love Feeding Matters and I'm glad to spend a couple minutes today and speak about our. Our feeding journey. Thank you. [00:02:27] Speaker B: Yeah. Yeah. And I know it's always so hard because it's hard to put such a long journey into such a short amount of time. And so I think even just to get us started, even. Do you want to tell us about your story and about your family's story and start from as early on as you want? I think it's important for you to start where you feel comfortable. [00:02:52] Speaker A: Okay, thank you. Well, my name is Talia, and before we begin, I'm Navajo. So when we do anything in public or speaking, we introduce in our language. So yat e xie Talia. Laughter Unisha. Hello, everyone. My name is Talia. LAUGHTER I'm from the Rock Gap people, born for the red running into water people. My grandfathers are Red House Clan and Bearwater Clan. Thank you. And this is how I introduce myself as a Navajo woman. So I am a mother. I'm a wife and a mother to five children. We have four, four boys ranging in ages from eight to 14. And our daughter is five. She's the baby and rounds out the pack. She was born and her name is Jaelyn. She was born during COVID where kind of, you know, everybody knows what that experience was like. And she was born the day after Halloween. So November 1st. She definitely was a surprise. She was an at birth diagnosis with down syndrome. So being our only girl and having that diagnosis kind of sprung on us at birth was quite the experience. We spent time in the NICU when she was born for 17 days. And it was at that time that she required all the breathing support. She had issues with her blood, so we didn't know what to expect. And immediately we had to become advocates for our daughter. And it took a little while to try to sort out what her issues were. Um, and as we were approaching the date that she was going to be discharged, we began to bottle feed her because she was NG fed for I think, two weeks. And we bottle fed her and she did okay. They were saying because she had down syndrome, she had low tone. So we expected a little bit of a struggle. But my husband, good thing he was paying attention, he noticed that around her mouth started to turn blue when he was feeding her with the bottle. And we kind of thought, that's that looks different from our other children. Lindy Bottle Fett. So we talked to the staff there at the hospital and they're like, let's do a swallow study. So that was our first introduction to any kind of different feeding from the rest of our children. They did a swallow study and they said, she's aspirating on the milk that she was given, so let's thicken with oatmeal and we're going to send you home tomorrow. So we were excited. She definitely had a couple machines that she needed for monitoring at home and through the night. And the next day they found that she was struggling a lot more, even on the thickened formula. So they decided to keep her a couple more days. And that's when they inserted an NG tube and they said, this is temporary. She'll probably end up with a G tube because we don't know how long it's going to take for her to gain the Musculature and the coordination to be able to feed successfully by mouth. What do you do? You learn I the study. So we googled everything that we could and the nurses gave us a crash course. This is how you operate it. This is what you listen for. [00:07:02] Speaker B: So they taught you how to put it in. [00:07:05] Speaker A: We got to the point. Yeah. How to insert with the NG tube. With the NG tube. We learned how to tape the different layers of tape and how to secure it because you, you never. You don't realize it until you're in that area. But the nurses would kind of put the tape up into her hair. And so when we had to adjust it, we have to pull her hair. And that was really tough because she's a baby and at that point we had to do absolutely everything for. So we took her home on a feeding NG feeding tube with the machine. And boy, that's tough. That's really tough. The first, I think day or two, we were super excited. Our baby's home. And then it felt like real life started. And we didn't quite know the different options that were available. We were told we had to feed every three hours. So we would do a bolus feed every three hours and a couple days of that and we were just wiped out. We were exhausted. You start to get delirious because you're living life three hours at a time. I can try to squeeze in a shopping trip and then I can try to just daily tasks, laundry and clean up at home within that three hour period. It worked for a little while, but managing a household with all my children. And my husband was beginning to look at returning to work after being off for our new baby's birth. We were trying to figure out what do we do. At that point we tried googling how. What, what's next. At that time we got on social media and were able to find a couple parents who suggested like a continuous feed so that she could be fed for longer periods of time. So we just kind of Google doctored our. Our way to find out, okay, the rate this is how much she needs to do. We know she needs this amount of feed every day. But it definitely was. And remember with COVID we couldn't easily just say, hey, we need a specialist visit because of all and everything. So we did our best. And then we were able to get into an ENT and then a gi. I think it was like two weeks. But in that short amount of time we were navigating that feeding issue on our own. Um, yeah. And we didn't. We Just did the best that we could, of course. [00:09:58] Speaker B: So for 24 hours a day for those two weeks. [00:10:02] Speaker A: Yep, yep. And that was our, our first taste at just advocating trying to find out what do we need to do, what are we missing? Anything? Is this safe? Because we. You hear the word aspiration and anytime that I've had an aspiration experience, it's been just terrible. You know, you struggle to breathe. And our brand new baby was doing this and we're like, how do, how do we help her? So fast forward a little bit. She was three months old and she started having a weird breathing sound. What turned out to be laryngo Malaysia. We took her into the hospital and they told us she has this. Okay, it's okay to go home. We were like, no, we don't, we don't know what this means. Right. She's breathing, making noises. So they were like, okay, we can have her stay overnight for observation and then we'll go from there. She was hospitalized that night and they, before they released her, they wanted to do an X ray on her lungs. So they did. And they're like, she's got a ton of fluid in her lungs. We can't let her go home. So that began the whole. The next journey where we found out that she had pneumonia. While she. We just didn't know. We didn't know she didn't have any symptoms. She didn't show visibly that she was struggling. We knew that the sound of the laryngomalacia was there, but that kind of covered the pneumonia sounds and typical symptoms that you would find. So from there they told us, you know, we, we have to keep her here. And then her sat started dropping. She. Her oxygen numbers started going down. So it was kind of nice that we were there in the hospital that they were able to watch her. But that was her first kind of episode where we had to stay in the hospital. We have to find out what numbers are important for oxygen, for what, what expectations they had in order for her to go home. So we went home and about two weeks later, she caught a virus. So we took her to the hospital and we go to a separate hospital. But they were like, she needs more care than we can give her here. So they transported her and she was so tiny. The nurses were coming in and they're like, we want to see your little peanut. Because she was so tiny, but she had all these tubes and everything tied up to her so that she could have the support. And that just was the first of many, many hospitalizations that she would have due to aspirating. Even though she was tube fed, she had GERD and the milk was coming back up and then she'd reflux it and then she'd aspirate that. And so you put a virus on top of that and it goes into pneumonia very quickly. And since she was a baby, she didn't have any immunity built up, so she contracted viruses very easily. And I've counted it out. In the first two and a half years of life, we were hospitalized 21 times, many of them for at least three days, up to seven days at a time. So once a month we were there in the hospital for oxygen support due to aspiration pneumonia. Um, in that time, due to the laryngomalacia, she had a supraglottoplasty, which we were hoping was going to help the issue. But with her down syndrome, her hypotonia, her floppiness, her not really strong tissues, everything was very loose, very weak. So the expectations that the doctors had for her to quickly bounce back from this surgery, the intervention, it just didn't, it didn't take as quickly as they hoped it would. So the next thing they tried was a botox injection in her, the back of her throat, basically to try to build up the area so that she can help swallow. She had a repeat superglottoplasty a couple months later. She had just all the things. She's had her tonsils and adenoids taken out. And that was a tough one because it helped. It seemed to help. But she ended up needing to go back a week later because she. The scabs and the scarring that was supposed to take place burst open. So she was aspirating the. Her fluids from that. It was just time after time after time, just back into the hospital. And I don't want to say, well, at the time they kept saying, well, maybe it'll be better if she gets put on in G tube. She eventually came off the inji and we were just bottle feeding and thicken everything during that time. So the option of the G tube was I was going to ask if. [00:15:48] Speaker B: There was a G tube placement in there or if they decided to go. [00:15:51] Speaker A: For maybe even a GJ to help with the reflux. But. But she was bottle feeding in there. It was. Yeah. So if I rewind, I'm sorry. She had the NG tube for three months. So when she had her first airway surgery, her superglonoplasty was when they pulled ingi and that began our feeding therapy life. Okay. We would attend feeding Therapy once a week, trying to the different combination of bottles, thicknesses, swallow studies, just all the things. So we found a good combination with a man bottle. And I forget what flow level. I think it was like the zero. But that worked really well for her. And then she was thickened all the way up to honey thick at the time, which is very, very thick. And so we had to learn the different how to hold her and how to help her. Well, you know, you can only fill the nipple a certain level and then you gotta sit her up so she can swallow and then turn her. So we did this kind of motion for a very long time. She, she, she fought through it. You know, she, she's definitely a fighter and she's definitely willing and she has the greatest appetite. But having to modify every feed that she's had since she was born is definitely a journey. Takes its toll. Yeah, yeah. So we did feeding therapy. She was recommended to do the intensive feeding program, which meant that we have to go to the feeding therapist four times a week. We did a six week course of that. So we were there all the time. And it was during the summer, so I would have to take all the kids and we would go into the therapist's office and work with her. They did vital stem, which is where they put the electrodes here on her throat or the outside of her throat area and stimulate it to try to help those muscles to build. And after six weeks of that, they did a swallow study and she didn't have any progress at all. It was very disheartening. It was very discouraging because we invested all that time, all so much, just time and money. It was tough. And it was really hard to tell the kids that we were in, in this together because we took them to the, the office with us and we had to tell them it didn't work. So they were trying to explain to kids, we have to do something else. For sister, it, it was very hard to do right. So we continued feeding therapy once a week for, I don't know, another year. And after, after about three years old, after she had her tonsils and adenoids taken out, she began to turn that corner with the viruses. I think her immunity started to build up and she just became strong. Somehow she was able to fight the viruses on her own. So when we would detect a little warm feeling and then we'd check, oh, does she have a fever? But she wouldn't struggle the way she did before where we could visually see, okay, we've got to take her into the hospital. So we did see that she was getting stronger and that she was able to fight the viruses on her own, which we were thankful for because that meant that we didn't have to stay in the hospital for days at a time again. So that brings us to when she turned 4. I just kind of hit the wall with feeding therapy. We were going at least once a week for four years and I just couldn't it anymore. [00:20:17] Speaker B: No, how could you? [00:20:18] Speaker A: That's so long. And so much thankful for the therapist and thankful for the doctors that were able to help us, but I mentally, mentally and emotionally couldn't handle it. So I consulted with the doctors and said, would it be possible if we could take a break? And they, they thought, well, at this time she's kind of leveled out. She's kind of come to the point where she is still on thickened fluids. She is about a half nectar. And I know that there's a different name for half nectar now with the new standards that have been developed. [00:21:04] Speaker B: Yeah, with that. Have they started talking to you about Itzy and the how to talk about thickening in a different way? [00:21:11] Speaker A: Yeah, yeah. But I think around that time was when I was like, okay, I can't do this anymore. So that's, that's kind of where we left. They said we can continue sending thickener because we are fortunate to get that through our insurance. So we still thicken her. Her fluids, but also the other part of that feeding journey is not just her fluids that have to be thickened, but her food also has to be prepared a different way than the rest of the kids. So we've got to chop everything up to like a half inch size and then make sure that it's not mushed or mashed, but a little bit bigger than that. So a little bit where she can chew it. She is able to chew a little. But, um, we just, you know, we, we have to help prepare her food in a way where it's going to be safe for her to eat and because she does still aspirate everything. So it's, it's definitely a journey. We're still there. And feeding therapy, the therapist said they'll be waiting for us for when we come back. So with down syndrome, they, the doctors and the specialists tell us a lot of the treatment and intervention that she has will always take time. And when you think about time, you think, oh, maybe a week or in our case, maybe a month or two. But we're going on about a year now where we've been able to take a break we're allowing her to grow. We're still helping her with thickened fluids. We're helping prepare her food so that she can eat it safely. But I know that she has. Sometimes she'll take her cup to the refrigerator and she'll get water and we'll help her. We'll give her just a little and she'll try to drink it, but she's still not able to swallow regular water. So that really breaks my heart because kids, they, you want to give them water, that's the first, the best thing that they can have to drink. And everything she has has to be thickened. So we can give her straight thickened water, but we always put a little bit of flavoring in it because it just seems to go down a little easier. And so that's, that's where my heart breaks. Is that the taste of plain water? She doesn't, I don't know if she knows exactly how that tastes because everything has to be thickened. [00:24:00] Speaker B: Everything's been thickened. [00:24:02] Speaker A: Yeah. Yeah. [00:24:04] Speaker B: So how are you feeling about your journey now today, having had this year long break, knowing that there's still answers that you need, knowing that it's still this journey that you're on. How are you feeling today about all things feeding? [00:24:20] Speaker A: I am, I'm okay with taking the break. For a long time I was afraid to even bring it up because I felt like I would be failing my daughter. I felt like I want to do the absolute best that I can for her because I don't want her. I don't want to miss any windows of her development. I don't know if, if we, if we skip during this age period, can we come back to it or will she ever, you know that that's my biggest right. [00:24:52] Speaker B: Are you missing a critical window by not pushing through? [00:24:56] Speaker A: But at the same time, I can't prioritize her and drag everybody along and say, you guys have to wait. We're focusing on one child. And that, that was another part that really touched my heart because we have a large family and we have to make sure that everyone is cared for. So I'm able to rationalize it and say, well, she really does need to grow. She has made progress in other areas. She's able to jump, which is a big deal for her. She's able to run and she had balance issues for a while. She's able to write. Just the other day she grabbed some crayons and she did a couple wiggles and she said M and then she did a little more and she Said A and she, she wrote an M and an A and then a U. She says U and wow, that's amazing. So we're super proud of her. Does struggle also with speech. So she's speech delayed. She on a good day, we're lucky if we get a mama or a dad. She has regressed a little bit so now she's at ma and na for dad. But a lot of the beginning sounds, the M and N, she's able to say those. So like them M, N, ah, you know, she can communicate those. So you just give and take, which is hard to do but it, to see her say, you know, she'll hold it up and show em. It's huge. [00:26:50] Speaker B: It is huge. Well, and that break was needed for her too. You all had had a really long four years and a lot of our families that are calling us or talking with us, I think so often you're focused on what we need to do next and we forget that. You do have the opportunity to say we need to take a break. And your story of sharing it felt like failure is one that we've heard a lot. When the idea of taking a break comes up or taking that pressure off of moving forward on this progression. And it's not, it's not failing to take a break. And it gives you all the opportunity to recharge, to be the best that you can be and give yourself that space a little bit too because it's, it's, it's needed sometimes. At what point in your journey did you learn about feeding matters or did you have support in other ways because you're part of such a strong community? How, how, what did support look like for you and, and your husband and supporting Jaylen? [00:28:00] Speaker A: Well, that's also a journey. We went home and we spend our time between the city and the reservation. We have ranch areas and animals that we help to care for. And there's about a six hour drive between the two communities where, where we live and work and then where we call our home like our home base. We were home one time and I had suspected that Jaylen had elevation sensitivity and where we, where we live is about 8,000ft. So we would go home and she would have a hard time breathing. This particular time it was July 5th, so everybody was home. There was a lot of busyness. We said, hey, let's take her into the doctor and see if, if she really is struggling to the elevation here. We took her in and they said, yeah, you know, we, you just either have to go home back to like our thousand feet or we can fly her, but she needs to get out of here as soon as possible because this isn't helping her. And that, that's really hard because we were on a holiday weekend. We're excited to be home. We had, you know, just, it's your home that you do. [00:29:21] Speaker B: Yeah. [00:29:25] Speaker A: While we were there at the hospital, I told them, you know, I, if we're gonna do this, I don't have thickener here in the bag with me. I left it at our, at our house, which is about an hour from the hospital on the reservation. And they said, okay, let's see if we can find some thickener. Which started to kind of scare me because they didn't quite know or have access to thickener there at the hospital. So they, I said, I can probably finish this afternoon, but after that if we're going to have to go home, I don't have anything to give her. And it's about a six hour drive to get there. So they started calling around and they found the therapy department within their hospital and they had to call somebody at home so that they can go into the therapist office and grab some thickener packets. It was only enough for us to make the six hour drive and they were able to give us the little stick packets of thickener. Get home. So they said, follow up with your pediatrician when you get back and we'll kind of discuss this elevation oxygen issue. So we got home, we went home that afternoon and took my daughter to the pediatrician the next day. And we love him. He's an amazing pediatrician. He says, hey, have you ever heard of this organization? It's called Feeding Matters. And I'm thankful that he was even, that he even knew that Feeding Matters existed because I just had no idea. He says they help people with feed pediatric feeding disorders and you know, you can look them up and see if there's any way that they can help you. So we went home and that was the first thing I did. Google Feeding Matters. I looked at it and I was like, wow, look at this. This is amazing. I wish I would have had this three years ago. So I began to cruise the website and found the resources, the family resources. That was amazing because there's books upon books upon books of people who are talking about the issues that we're going through right now. What do you do with a feeding tube? How do you, you know, they have children's books about having feeding tubes. That was amazing. And the other things that I thought were really cool were like the utensils that you could use use to help a kid with a feeding issue or like therapy grips. And I was like, where has this organization been all my whole life? So I definitely scoured the website and looked as at as much as I could and called my pediatrician back and I was like, thank you, thank you, thank you because this is exactly what we needed. So it's been a journey, but I'm really thankful for Feeding Matters and just the publications and the, the support that's there. So on the website I saw that they had the. The Power of Two program. [00:32:39] Speaker B: Yep. [00:32:40] Speaker A: And I applied for that. Why not? And I was able to get a mentor parent who at that, fortunately she has a son with down syndrome also. So we were able to kind of connect over that and to talk about the different issues that we're facing. And she's like, I know exactly what you're talking about. I've been there. It's okay. So having somebody that's able to just kind of hold your hand and that you can kind of vent with and be like, I don't understand or what did you do during this? How do I. What, what other off advice or support can I find? And she was, she was there, she was a listening ear. She was encouraging and super, super thankful for that. So great. From, from that moment, I've just been trying to help other people. When I come across people that are looking for feeding support, hey, there's Feeding Matters. You know, if there's any way I can help you find that or anything, let me know. So definitely you're such a champion out. [00:33:52] Speaker B: There for us and that's what helps hopefully get resources into family's hands a little bit earlier. Because your story is also something that we hear too of like, I wish I found you a few years ago. And that's always such a gut punch because you're, you know, you're. I do think we have really good resources, but you want to make sure that people are getting them when they need them. And I think you can benefit from them no matter where in your journey you're finding them. But hopefully with more awareness of this issue in general, people will be able to be there to support any of their community members that are experiencing this. And we do have a slew of Feeding Family support programs. And so you also serve on our Family Advisory Council. And one thing that I wanted to share with our listeners because I don't think we've talked a lot about the Family Advisory Council much before, but our Family Advisory Council is the way to make sure that what we're doing is in line with what family members are wanting, what they want to see out of the, not only the support we provide families, but the education we provide professionals, and then the work that we do in system change. And so our Family Advisory Council has a chair that sits on our board of directors and is also really immersed in our PFD alliance and our education, advocacy, research and support program programs. Our Family Advisory Council is a collection of family members and I believe a few individuals that have a history of just a negative association with food and really looking at, you know, always tracking what's happening in our Power of Two program, our family Assistance program, all of our different family support programs, our summer support group series, our new cohort for Family first for those families that are on wait list and need that empowerment, and then also making sure that families are part of committees that are happening. So one of the things that we were talking about before, it's a huge win to be able to this next year for our upcoming conference in 26 to have a parent co chair the conference and then a parent co chair the summit for change that we also have. So just some major wins that the Family Advisory Council has been able to do and accomplish in working in partnership with Feeding Matters and now in integrating with the consortium as well, really making sure that lived experience is also part of that research is what they're, they're working on. So it's just really beautiful to see how much power families have when they have a seat at the table. And so how has that counsel been for you or what's been your experience in that regard? [00:36:37] Speaker A: The FAC has been amazing. The meetings that I've attended and the, it's, it's awesome because they are parents of people with feeding issues, kids with feeding issues. And it's not just down syndrome and hypotonia that they're dealing with. It's kids from all different walks and the different challenges they face. So it's been in the community has been amazing because they're like, oh yeah, you know, I've, I've been through this. Or you can say MBS Modified Barium study. And they're like, oh yeah, we've been through a million of those too. Or, you know, hey, my, my child doesn't have this exact thing, but have you tried this or that? So I have been able to meet a few of the families just virtually, but also in person at some of the Feeding Matters events that I've been able to attend. But one of the cool things That I thought was really neat about the FEC was that we were able to review the website. So that's how I found Feeding Matters. And we were able to go through and check all the resources. You know, are these current resources, are they still relevant? Do we need to modify any of the, like the web links and stuff? So just being able to open that up and looking at all of the different books or all of the different tools that are available for families and it's not, it's not a tiny list, it's a very slot on there. So it's definitely really cool to look at that and to see how many people are invested in the feeding world, in the feeding communities, people that want to help kids with feeding issues. That was really what blew my mind. And I was really excited to be part of that because on the everyday life level, you don't realize that there are so many people that actually want to help. So being on the FAC has been, it's, it's been a support and just, just a lot of fun, a lot of really good conversations and information that the families are able to provide. [00:39:01] Speaker B: And you're making a big difference for other families that are finding Feeding Matters, the other families that may have been pointed to our website and are finding us that way, the way you found us. And so that's super powerful as well. [00:39:14] Speaker A: Yeah, that's, that's definitely an honor. And I, I know that I need help and I just want to help other people in the same way that I've been helped. So that's awesome. [00:39:24] Speaker B: Well, we're always here for you. And if you're out there listening and want to make sure that you're not feeling alone in this, please know that you can reach out to Feeding Matters. We're here to support you, whether that's our Power of Two program or any of our other resources on our website. Talia, thank you so, so much for being with us to share your story with us to help others know what it. It's like and that what they're going through is not unique to them, that there's others out there that can support them. As we begin to close out, we just have a few questions. So one, I know that you and Jaylin and your family are on your journey still and that's going to continue to be and have its ebbs and flows. But what some advice that you would share with maybe parents new to this or who may be worried about feeding and unsure of what to do next or how to maybe even speak up if they're worried. What would be advice that you would give other family members? [00:40:28] Speaker A: My advice would be to not give up. When you're dealing with issues that are above and beyond regular bringing up children, that can be really hard, because whether you have a support system or not, we're the ones that are caring for the children. So I would encourage parents to not give up. The other thing I would encourage parents to do is to learn about the medical terms that are involved, learning about the anatomy, and just discover what you can. Because sometimes you can catch things that the doctors or the experts don't always get. Sometimes you can help to link those issues. And they're like, oh, yeah, I heard of that one time in college or one time, you know, one of my friends was studying and they said something about that. So if we're able to communicate in a comprehensive way with the medical professionals, that can be a big benefit to children. I know our doctor at home. He's been able to call his colleagues across the country and say, hey, do you know anything about this? Because I was able to say, I think it's this particular anatomy part. And that was a real benefit to helping Jalen. The other thing I would encourage parents to do is to stay the course. You know, I know, I know it's exhausting, but just don't give up and find the best way that you can to communicate with your professionals. Yeah. [00:42:21] Speaker B: Thank you, Talia. That's really great advice. When we look at how this field emerges and how we're able to help identify this and support families early on in these experiences, oftentimes we're seeing that there's barriers to that research and solutions. And what we like to ask a lot of our guests is, what do you think are the barriers and solutions to lived experience? And especially like parents and caregivers and patients themselves, being able to participate in research and impacting what the field does long term. [00:42:57] Speaker A: What. [00:42:58] Speaker B: What's your kind of take on that? [00:43:00] Speaker A: I think that there's definitely. There can be a disconnect between the people that are researching and trying to find solutions for these issues that we're facing as families. I was able to attend the Feeding Matters conference this year, and that was amazing. It was so amazing. But what I found when I was there is that as a parent, you go to a workshop and it's very. The jargon, the professional or the medical jargon that was spoken there, it just flew over my head because I didn't. I didn't understand as a just a parent. So it took a Little while to say, okay, I can do this, I can listen. I can try to take as many notes as I can so that it can understand. So when you talk about trying to bridge, trying to find a way where families and the researchers and the therapists and the doctors, how do we build that is just to continue learning. [00:44:20] Speaker B: And it's all talking the same language because, yeah, we do see that there's that disconnect in terms of what someone says maybe means something different to someone else, or maybe someone doesn't come from a place of understanding what that means. Or maybe a word feels triggering to a family that a professional is used to using all the time and doesn't realize the impact that that word has. So it sounds like your solution, which I think is a really good one, is that call for kind of common language so we can sit at the same table and have a conversation about what do we need to change in the field. And I certainly agree that that's like a huge piece to this. Is there anything that you didn't get a chance to share that you would like to share? [00:45:09] Speaker A: Yes. Thought of it just a moment ago and it slipped my mind. [00:45:13] Speaker B: No, that's why I asked it at the end. [00:45:18] Speaker A: Just, I. I wanted to share that as a parent, just being able to. To. To learn more about my daughter's conditions, to explore more. I told my doctor, I said, I think this is what is going on with her. Can we get a scan of her brain? I believe that there's this portion in her brain that's probably not working correctly, which is really hard to say as a parent. You know, I. I think something isn't really working correctly for my daughter. So after a while, they were able to justify it and they were able to do an mri. They did find that she has cysts in her brain and that it may be pushing on a certain area that affects her feeding. But without any more looking, I don't know, like doing surgery and actually seeing. Is this what's causing it? There's no way to tell. But I'm thankful that our doctor was able to. [00:46:41] Speaker B: Listen to you. [00:46:43] Speaker A: To. Yeah, to. To see and to say, oh, maybe that could be. But at the same time, as a parent, you know, we can't just jump at every problem that we think is a problem. [00:46:53] Speaker B: It's a hard balance. [00:46:54] Speaker A: So just being able to say, okay, I trust you professionals. I know that you're the expert. I'm only the expert in what we face every day. It's a big expertise, though, and having that. So Being able to talk to the professionals, like, back at the conference and saying, this is what we do. Is there a better way to do this? Is there a better way that I can be mixing the formula? And one of the people talking about the thickener, she was saying, well, we're trying to get our thickener into larger containers because what we have, they can only be kept open for a certain amount of time. So we like to. So we're researching how we can get a larger container so that it can last longer. And so being able to talk with the actual people who are formulating the thickeners, that was really incredible. To have a little bit of input as a parent and say, this is what I look for. I'm looking for. Because we carry around jugs of thickened water every day or thickened fluids, and is there anything else that can be done to help make this more convenient? So. And they recommended a different type of bottle that we could use to transport, which is it. It's. It has made a big difference because being in the heat in the summer, you want cool, refreshing drink for your child and not just warm, lukewarm. Lukewarm fluids. So just that. That is definitely valuable information when you can talk to people at the source. So that's cool. Yeah. [00:48:42] Speaker B: Yeah. Well, Talia, thank you so, so much for being here and for sharing your experience. And I know Haley just joined, but Haley had dropped off listeners, if you're listening. We didn't have Haley with us for a good ch, but glad to have you back, too, Haley. And so, Talia, thank you so much, everyone out there. If you do need anything from Feeding Matters, please know you're not alone. Reach out to us online or on any of our social media channels, and we'll be there to support you. So thanks for joining me. I look forward to hearing it. Yeah. See you next week. [00:49:17] Speaker A: All right, thank you. [00:49:20] Speaker B: On October 11th, Feeding Matters invites you to Feed the Cause, the annual signature event to raise funds for education, advocacy, and family support for children with pediatric feeding disorder, and arfid, held at the beautiful Papago Golf Club in Phoenix, Arizona. Enjoy an evening of gourmet chef tastings, mixologist creations, live music, a silent auction, family stories, and more. To purchase, purchase your ticket or become a sponsor or purchase a ticket for a caregiver, visit feeding matters.org feed-the-cause that's feeding matters.org feed the cause.