Episode 110: An SLP Mom’s Journey with TOTs with Amber Jara MA CCC SLP

Welcome to episode 110 of the Untethered Podcast. Today we have Amber Jarrah joining us. Amber is a pediatric speech language pathologist and feeding therapist. She's worked across a variety of settings the last 11 years, but loves birth to five and family focused intervention. She's homeschooling her four kids eight years and under with a variety of learning differences. Her whole practice and mentality shifted three years ago when her third child was diagnosed with a genetic difference. She was painfully aware of the lack of parent resources at that time and and today she is sharing her journey with us. Quick disclaimer. All information, content and material of this podcast are the opinions of the speakers and is for the informational purpose only and not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified healthcare provider. Welcome to the Untethered Podcast. I am your host, Hallie Balkan. I'm a certified orofacial myologist, feeding specialist and mentor. This podcast is all about getting your questions answered and collaborating with colleagues to bring you the most up to date information in the orofacial myofunctional therapy, tethered oral tissue and airway space.

I challenge you to keep an open.

Mind and join my mission to get this information out to the masses.

Let's get started. Hi Amber. Thank you so much for joining me on the podcast today.

Thank you for having me. Hello.

I am excited. I know that we've been just chatting a little bit before even recording and so I'm excited to continue our conversation and share it with the world. But we're. Before we jump in, will you tell us a little bit about your background as an slp? Sure.

I live in the birth to five world. It is my jam. I, over the last handful of years have worked in a variety of settings. Recently it's been private practice and hospital outpatient peds and NICU settings and feeding therapy.

Awesome. Awesome. And then as a mama, you kind of got thrown into a whole different space like many of us have. So, you know, let's jump in and start talking about your experience and your journey as a mom. And we don't have to go in order necessarily. So you pick which kiddo you want to talk about first. But share with us, you know how you fell into the tots and myo space, you know, beyond just pediatric feeding. Sure.

So I think my what started the snowball because it does all start to like run together and gets a little crazy would be my youngest, so my kids right now are 8, 6, 4 and 2. And when my 2 year old. So this would have been a year ago when he was one, right before one, he. I couldn't give the kid anything. Water, food, anything. Or we were choking and not gagging, like choking, Take you out of your high chair, beat the food out of you. Choking. And we didn't know why or what was happening. And it was terrifying. And so that was our, the beginning of our snowball. When somebody suggested a tie. He also, all of my kids were terrible nursers and we powered through, but it was awful. And I didn't know that wasn't normal until my other friends had kids and were nursing and were like, oh, there's no pain. I was like, what? Like, that's crazy. So he was the start of our snowball. We figured out he had a tie. We were referred to an ENT that was in a neighboring town and she ended up doing laser release in her office. And the kid literally hasn't choked since on food.

That's amazing.

The very next hour.

Amazing now, but how many providers did it take to get to that point? I mean, how many other people did you talk to to try and get help from with his choking issue?

A lot. Our pediatrician, who we have a wonderful relationship with but just didn't even know what to say to us. And usually it's like, oh, give it more time. The thing we hear all the time, just give it more time. Try to give him different things or try to cook the food different or give him a different cup. We actually went to. This was before I was certified as a feeding therapist. We went to. That just happened this last year. So we went to an occupational therapist who didn't know what to do with it. Never checked him for a tie, never even mentioned the word tie. Gave us some sensory based things to do, but it didn't make any difference at all. We went to a couple of other providers without much support or guidance at all. And at this point I am just terrified. Like, I can't let the sitter feed him, my husband won't feed him. I know that I'm not encouraging, but we're having a situation every day where all I can think of is like the psychological trauma that's happening every time I give you food and you choke and I have to beat this food out of you. You like, at what point are you going to stop trying to eat? And so I actually went to a chiropractor who was the one who was like, oh, he's got a tie, I can refer you. And she referred me to an ENT who specialized in ties, like, that's how we actually got there, was a chiropractor.

Amazing. That's amazing. And I think you bring up a good point, because we love our pediatricians, but what we have to remember is that so many of these medical practitioners with MDs and PhDs and everything after their name, they're not trained in pediatric feeding, let alone ties or orofacial myofunctional disorders. They're not looking at your child's palate. They might be looking to make sure a child doesn't have a cleft palate, but they're not looking to see if that palate's high and narrow. They're not looking for. A lot of them are not looking for the indicators that we really need to pay ATT to, to identify and truly rule in or rule out tots. You know, we know that there's that joke that floats around social media where pediatricians think that babies are fine if they can stick their tongue out. Those of us in the tots world know that many people who are tied can stick their tongue out. It's not an accurate way to assess for a tongue tie, especially in an infant who is supposed to bring their tongue forward over their lip to feed anyways. But that's neither here nor there. You know, it's. The other thing that I think is really important to note is that a lot of parents confuse gagging and choking. And this is something that I've talked about previously, where when baby's starting to transition to solids, you know, you may see some gagging behaviors, and that's okay. And that's typically what pediatricians, you know, if they say, oh, it's okay, give it a little more time, they're just gagging a little bit, fine. But if they're gagging to the point of vomiting or they're gagging every time they see, see food, smell food, touch food before it ever enters their mouth, or they're gagging as soon as the spoon touches their tongue, whether there's food on it or not, and it's going on for an extended period of time, you should seek help. It's not normal. And especially if a child is choking, I mean, if they can't get the food down their airway, down their airway, they can't get their. Down their esophagus. If they can't send the food down the right way and it starts to enter the airway, they may start to cough. We might start to see symptoms where their. Your body's trying to Clear that bolus. Because it's being protective, and that's exactly what the body's supposed to do. But if your child is truly choking and you have to pick them up out of their high chair and turn them over, over your knee and, you know, pound that food out of them, that is never normal. And, you know, one incident like that, I'm not saying it's okay, but if it were to happen, once you know what to do, you can move on from that. That's a different story. This is going on as much as you're experiencing it, where your child really couldn't eat a meal without choking. That's horrifying. And it's even more horrifying that all these practitioners didn't say, hey, I don't know how to help you, but let me refer you to somebody who can, because that should have been the next line of defense. Right. We should have been trying to. Or. I don't even know who to refer you to. Let me go talk with a network of colleagues and find out what. What they. Who or what they recommend, because, no, this is not. This is not okay. This is not normal. So, I mean, you're amazing. Really, Because I would have been losing it. I would have lost my mind. I was also that mom who had my first child who was painfully breastfed for 13 months because I was stubborn and I didn't know otherwise. And then I had my second child who was released at day five, and immediately the pain went away, and I was like, oh, oh, okay, now I get it. Now I get what it's supposed to be like.

So.

Yeah, I mean, that's. It's incredible how many of us mamas, even those who are in the feeding world, don't know breastfeeding should not be painful.

Yeah. No. Had no idea. And how many times it's. You're holding your baby wrong. You're not latching him correctly. I would go. We have a clinic here in town that all they do is support breastfeeding mothers. And I was there every week being like, it's not getting better. And they're like, hold him like this. Move him like this. Put your pillow like this. And I just wish that somebody even there would have said something about ties, because, my gosh, we were there all the time. All the time. With multiple children, not just with the last one. Yeah.

I mean, that's. I went to the IBCLC at my peds office, and the same thing happened. And of course, when they positioned her, she fed well. Right. And she transferred milk and everything was a. Okay. And then I got her home, and I'm like, why can't I replicate this? Like, and then you just start to think, like, what is wrong with me? Why can't I, you know? And, yeah, it just was not. It was not ideal in any way, shape, or form, but it's exactly what happened, you know, Recently, I heard a mama tell me that called my private practice. She said, you know, well, I was told that we might just have to use a nipple shield ongoing, like, throughout our entire breastfeeding journey by the ibclc. And I was like, wait, this is supposed to be the tot savvy ibclc. Like, what's that all about? You know, she's supposed to know about ties. She told you to use a nipple shield for the next couple years. Like, hold up. I'm not cool with this, you know? And so it was one of those situations where I was like, even, you know, even the people who supposedly know about tongue tie may hit a wall and not know how to help you sometimes. But we should never defer to a crutch or a band aid. We should always continue to try and help our families, seek the help that that child needs, even if it's above and beyond our current skill set. So, anyways, that was my little there. So how is your little guy doing now? I mean, you said that tongue tie procedure went well. Stop choking after that. You know, no more choking and feeding is okay now. Or how is. How's that?

Yeah, we literally didn't have a problem starting the next day. Like, that was it.

Oh, my gosh.

Yeah. Yeah. It was absolutely incredible. I had no idea that it was going to be, like, such a. I don't know, such a fix.

Yeah. Yeah. I mean, and I think that's, like, what we all hope for, right? We all hope that when we go through a procedure like this, like, it's going to fix something. And we know that for some children, that does happen. And for others, they still need a heck of a lot more therapy afterwards and before and every, you know, leading up to it. But I'm so happy to hear that he's, you know, able to eat and enjoy eating. Was there anything from. How old was he when he had his release?

He was just a bit over one.

Okay, so anything psychologically that you think he has, like, with food or is he okay?

No, he seems to be okay. We've got. If you want to carry that as a lead into my other human. Yeah, so. So my second and my third both have Tons of feeding issues that I didn't realize were related. They weren't necessarily choking. But my. My second, she is. She is like my most beautiful, quirky soul you've ever met. And she. I think starting maybe at her second yearly doctor's appointment, I started saying, yeah, she doesn't really eat. I can't get her to eat anything. Does she weigh enough? And every year we would go back and I would say, does she weigh enough? Because she still doesn't eat. She won't eat anything. You know, she's got a list of. I think maybe. I think maybe we're at, like, nine foods now. It's actually her birthday today. She just turned 8 years old.

Happy birthday to her and you.

But she's eight. And every year since she's been two, I've been asking, does she weigh enough? Because the girl doesn't eat. Well, right before COVID right, we found out she has a severe posterior. Tie. She's been the same one who doesn't sleep through the night. She. She has, like, the weirdest swallow when she drinks water. It's so loud. And I've been asking for years, like, I don't think that's normal. Why does she do that? She doesn't eat a lot of stuff. She gags on most things that I can get her to even try to put in her mouth. And she's got those chronic, like, dark bags under her eyes.

Venus pooling.

So as I'm learning because of, you know, last child, I'm like, oh, my gosh. All of these things are potentially because of this. Over the last year, she's had this, like, mouth guard that she wears at night that we were given by the same ENT that did my youngest revision. And my oldest also had one. Her. Her stuff was pretty minimal. She had kind of a wicked tongue thrust. And that's all pretty much figured itself out. But my second, she is still not. That just didn't really work. It hasn't really worked. So we're actually starting her. We have a myofunctional therapist here in town. She's starting next week.

Oh, good.

Yeah, they're going to do four weeks and then do a revision on her. So we'll see what that looks like. And my. My third, he starts as well, and he will have a revision here in the next few weeks. So we'll see. You guys are going to be busy.

You'll have to circle back and let us know how it goes.

I'm trying not to get my hopes up because I do Know that, like, it's not overnight that it will improve like it did with the youngest.

But I wonder with your daughter, with your second daughter, because she. You say like, quirky and like Lily is like this funny little like Dr. Seuss walking around. Like she just rhymes things and you know, she's like, just like. I'm like, you're a very entertaining child. But she's definitely that kid who had the high, narrow palate. She also had a. So she had a tie. That was revised when she was 24 months old. Because when I came back for my myo course, I was like, holy cow, this is why I couldn't nurse you comfortably. Okay. And she was also first percentile for weight. And she. What was very interesting was when I transitioned her to solids, I just gave her, you know, everything and she took to. And she did okay. And then she had like five vaccines in one day and threw up at 15 months. And she slept in that vomit and it was like adult vomit. It was pretty gross. Probably should have given a disclaimer to anybody listening. Sorry, guys.

You're a mom. I feel like you're.

I know. It's like when you're a parent, it just, you know, we have a lot of non parents listening. So for you, those of you non parents, your time will come.

So we.

I remember like in the morning, my husband was like, hallie, get in here. He didn't know what to do. And she was a tummy sleeper or like a tripod sleeper with her tush up in the air because airway, that was like totally an airway thing for her. So thankfully she wasn't a baby who, you know, or a toddler who slept on her back and her airway was clear and so she was okay. But she never. She had had grilled chicken and baked fish the day before. Never again has touched either. So I'm like, it's either changed like chemically like her taste for them or, and, Or I don't know. But she has clearly traumatized by that. And she doesn't even know that that's what happened, right? Like, she just got no clue. But it's just so fascinating to me because she's my kiddo who is again, first percentile for weight up through her whole first year. We finally got her up to like 5th percentile or something. But it was always okay because she's on her own growth curve and she's not falling off her own growth curve. And I was like, I can't get pants to stay on my child. But okay. Like, this is my leggings kid, because that's all get to stay on her time. Little waste. And she finally, like. So the thing that it's very interesting is, like, she'll eat greens and she likes eggs. And so, like, she. She'll eat enough nutritious things that I'm like, okay, I don't need to stress. But at the same time, the kid could also eat, like, carbs and dairy all day, which is not helpful for her inflame, you know, her inflammation, because she's a kiddo who also had enlarged tonsils and all that fun stuff. So we had her released at 24 months. Her constipation went away the next day, which was really cool. And, yeah, it was phenomenal because she was a kid where I refused to put her on Miralax because sometime between getting pregnant and having children, I became really crunchy. And I was using, like, you know, something from Whole Foods that would work. But I was also like, I don't want to have to give it to her every day. Then when we gave it to her, you know, I'd give it to her one day, it would work the next. And we were like, we were just kind of figuring things out. But she hasn't had to have it since she was 24 months old because of having that Ted, the girl tissue release, which is incredible. But then, yeah, she just, you know, got older and older. She's the kiddo where, like, I can only order her a cheese quesadilla, Mac and cheese, or a grilled cheese at a restaurant because my kid does not eat hot dogs, chicken, it's like. Or pasta with, like, olive oil and cheese or butter and cheese. Like, no sauce. Right? Like, we just. Just recently, when she started to go through expansion, which opened up her airway, I think she was sleeping better. And just her. Her tonsils went down in size, and everything started to kind of feel like it was falling in place, like, anatomically. Now I'm like, well, great. Now she doesn't choke. She coughs on water when she drinks through a straw. And I think that now that her anatomy has changed in her mouth because she's got a wider palate, she can't get the posterior portion of her tongue to elevate. So I think the release she had was perfect for the anatomy she had at 24 months, but is no longer holding up for the anatomy she has as a five and a half year old who's been expanded. And so now I'm considering taking her back because she also, when she's drinking. It's like, drink, drink, drink, cough 10 times, you know, to try and clear it, because it's clearly not, you know, she clearly doesn't have good control over it. So before we head back to the oral surgeon, she's just restarted myo herself, and she's in her, like, third week of mayo with one of my therapists. And, you know, and she's. She's done it before, so she can do a lot of, like, the exercises, quote, unquote. But it's also interesting to see how she has lost some of the skills because she hadn't been expanded yet, and her palate was still kind of high and narrow, so she really didn't have a lot of room for her tongue. And she kind of maintained that lisp sound and that tongue forward swallow, even though she knew exactly what to do. And we had the tongue where it needed to be most of the time. So it's very interesting. And to go through this as a parent where you're kind of able to see firsthand, one, you start to appreciate all the homework that we give out and how hard it is to get it done.

Thousand percent. I will never judge again, ever. Oh, my gosh.

Like, even my therapist and I, because her, like, her son is doing Maya with Lily and on the computer together virtually right now, and we're both like, this is.

This is hard.

This is hard to do the homework. Why is the homework so hard? It's just like trying to fit it into your life. Right? It's just.

Yeah, yeah.

No. And I've always joked, like, I've never judged a parent for not doing it because I'm like, I will never judge anybody. I don't know. I'm not in your shoes. But we also know it'll take longer if we don't do. So we're going to try and make this work. But, yeah, it's just. It's so interesting. And it was making me think with your daughter. Like, I just wonder with the audible swallowing, if it has to do with, like, one, obviously, anatomically where things are. But two, like, is she swallowing air? Like, maybe she's swallowing air that also fills her up a bit and she's less interested in foods. I don't know. That's just the first thing that came to mind for me all the time.

Because it makes my spouse insane. He, like, cannot. And I'm like, what do you. I don't know. She's a burpee kid.

I don't know.

No, that's probably it.

Because that's exactly what happens with babies with breastfeeding aeroplane, Right. They swallow too much air. It fills up their bellies. They're uncomfortable, you know, so at least she's able to burp it out so she's not uncomfortable. Right. So that could be a really great benefit to come and, you know, the next few months. Oh, man. Oh, goodness. Children, I swear. Yeah. So both of your kiddos are in myo. Well, these are your oldest two kiddos.

So this is my second and my third. My third kiddo. He is the one who I am. He's like my most complex kid. He is. So he's my one who we've done genetic testing on. And we know he has this genetic difference. Nobody really knows much about it or, like, what it means for him as he moves forward. But because he had a genetic label, we kind of chalked up his palette and face shape to genetics until the youngest was like, oh, he has a tongue tie. And junior, hold on.

It's okay.

So my youngest, when he was diagnosed with this tongue tie, and I kind of. I kind of was like, hey, can you check out my other kid, too, real fast? Because he was with me. And they looked and they're like, oh, my gosh, his is severe. He has a severe tie. And I hadn't even considered that that was a part of any of our hiccups. All of his stuff just got chalked up to this genetic difference. And he was. He was my baby who he's always like, all my kids are like 98 percentile. Like, I have massive humans. I'm a tall human. My husband's tall. They are just like, top of the growth scale. He has. I don't think. I don't think he's ever been above 30th percentile. So he's just like, tiny. And he clicked while nursing the whole time we did it. And I just kept saying, like, he's not latching right. He keeps clicking. And I was holding him wrong was always the thing. And so I would fix it. And we. I mean, I nursed all of my kids well past a year, most of them, like 18 months. And so we, like, figured it out, but he never really did. He is somewhat of a picky eater, but he is another one who. I don't make my kids eat anything. Like, if you decide you don't want it, it's going to be on your tray, but you can say, no, thank you. Right? And we can move it to another plate if we need to if it's bothering you that much. But he had a sitter about a year, about a year ago who forced him to eat peas and he choked. And now he won't eat anything that is like, looks like a pea or a corn or anything like that or even sometimes other things. He'll be like, no, I'm going to choke. And I think, what's happened? So we actually had an appointment right before COVID hit. The ent who took care of my youngest had said, he definitely needs a revision, but I want to make sure tonsils and adenoids are fine. So she had referred us to go because at his age, they will sedate them to do the revision. So she was like, I don't want to sedate him and then have continued issues, whatever the things. So we were supposed to go. Then Covid hit and we didn't. Over the last year, he. So the kid didn't grow for like a year and a half. He was in the same size clothes. He just didn't grow well. In the last year, the kid grew. And all of a sudden his palate is. It feels like overnight is so outrageously awful to look at. His overbite is. I mean, he probably has a half an inch of a gap between his bottom teeth and his top teeth. When he closes them, it looks like he sucks his thumb because he's got like this flare of his teeth in the front. He. His speech is so, like, sloppy. And he also is severely speech delayed. He's my kid who wasn't making sound at four months. He didn't babble by 10 months. We. All right, we chalked all this stuff up to genetics. And I'm excited to see what his life looks like in the next six months or a year. But I also wonder, like, I bet the revision isn't going to be enough. We're probably going to have to do other things because his palette is so narrow and his speech, right. The kid can't make Rs. He's got this wicked tongue thrust. He's super slushy. And I'm just like, oh, dude, I wish I would have known sooner. Like, things are so hard for you. And I just wonder how different that would be. And I'm, you know, as a mom, you're always like, oh, my gosh, I. If we would have done this two years ago, I wonder what that would look like or how much easier things would be for you now.

But yeah, I mean, it's one of those things. It's so interesting. And when I'm working with infants, especially infants under 6 months. I feel like if we get that tongue up there, we can typically use the tongue to reshape the palate because they're still so moldable when they're in their first year, even arguably in their first six months. But beyond that, you know, I start to go, like, I don't know that the tongue's going to be able to shape this. And if the tongue doesn't have room, even if we release it, it's not going to hang up there. It's going to kind of flop back down to the bottom again. And that's where, with Lily, I was willing to put her into an ALF appliance because it was like a light wire appliance. It's not super painful. Like, was she a little bit uncomfortable because things were moving and so she was a little sore? Yes. And did my already picky child not want to eat much for, like, you know, a week after getting it? Yes. But we are also not a family where I was like, okay, this kid's falling off the weight charts, and we're gonna have to put her on a feeding tube. Like, we didn't have that situation going on. So I had wiggle room. If she wanted to be picky and she only wanted to eat, you know, foods I'd rather her not eat for a couple of days. Like, fine. Like, big picture here, right? You know, we make it work. But it was very interesting, too, because she. We put her into the appliance when she was 4, and I really like it because it leaves the palate open. Young child. And so the tongue still has room to go up there. And my whole methodology now, after having a child go through it and patients use this and various other appliances is anything that feels like that they can almost forget is in their mouth is, like, to me, like, really nice to have. And that allows us to start working on the MYO program and getting the tongue up there, like, when they're halfway through it. So by the time the appliance is ready to come out, we know the tongue is going to stay up there and act as that natural palate expander. And we don't need to then have other things in place in the mouth anymore other than the teeth and the tongue and what's supposed to be in there. So for her, she flew through, and because of the pandemic, she ended up being in the appliance for a year, but she was done after eight, nine months. And when they're super young, they move. They move quickly. And with the als, I have the most amazing photos of her narrow palette before and then her beautifully, like, wide palette afterwards. Like, it is just so cool to look at. And we did a CBCT on her too. And like, my dentist was like, we don't have to do the follow up. We know her airway is wider. Like, let's nod it. Because she's also like, you know, crunchy. Like I am of it. She's like, let's not exposure to the extra radiation for no reason. And I'm like, no, no, you're doing it. I was like, we are doing this. So yeah, no, there's. It's really, I think it's really cool because we've come a long way. We can, we can do things that are not headgear, that aren't like these big invasive things that, you know, I really like the ALF appliance and similar appliances because it grows not just, you know, laterally, but it grows that anterior. So you need that like AP movement. You need basically that forward growth of the maxilla. And it was just very cool to see it actually like happen on my own child. And, you know, it's. It's been an interesting journey. She's out of it now. She's back in Mayo. It's not necessarily the order I would have preferred, but, you know, it's okay. We're doing fine. And we're, we're kind of monitoring, monitoring Mia because she was released at day five. She breastfed. Well, she was my kid, who. My kids are tiny in general, but like, she was definitely way above where her sister were. Her sister was in all the numbers and she was just at the dentist and we were looking in her mouth.

And we were like, she's kind of a little narrow.

She doesn't have this like beautifully wide palate. But she's not anything like Lily was. And she has appropriate spacing between her little teeth too, as a three year old. So I'm like, you know, it's a little bit tighter in the back. So I was kind of like, you know what? She doesn't have any feeding issues. She doesn't have any sleep issues at the moment. She does have the viral induced asthma. And I have to wonder if that's kind of like an airway related thing at all. Like, is it really viral induced asthma.

Or is there some other airway thing.

Going on that I'm kind of missing? So, like, we decided not to do anything at this current moment because she's three, but you know, like, I would totally put her into an ALF appliance. Like Lily, because I think she could totally tolerate it. And like, it worked. And you know, I feel like, okay, I look at Lilly now that she's got these this nice closed mouth posture, she is nasal breathing. And I just like walk through the kitchen and I'm like, yay. Little things in life, right?

I had somebody the other day who I was talking to about my third and his name, his name is Cecil. She. We were talking to her about Cecil and this whole process and she goes, but he's so cute. I heard that, like when they get their ties released and their face shape changes, they get cuter because they're more symmetrical. And she goes, how could he get any cuter? It was like the weirdest conversation. And I was like, the things we, like, read in here. And I just giggled and I was like, I guess he will get cuter. I don't know.

It's so funny you say that because, because when you get into the Mayo world and you start to look at celebrities and you start to look at, like, who people consider attractive, I mean, there's plenty of celebrities with OMDs, don't get me wrong. But when you look at people who have these like beautifully symmetrical faces and their wider jaws and high cheekbones, like, that's what we should look like. And I actually went through adult expansion myself. So I had been in expansion as a child and I had orthodontic relapse and then I went into permanent retainers that I had taken out when I turned 30 because they were like, oh, this will fall out by the time you're 20. Yeah, that didn't happen. So I asked them to take them out when I turned 30 and they're like, yeah, yeah, let's take them out. And then my teeth started to shift because I had an oropacial myofunctional disorder. And apparently my tongue was not resting on the palate and it was resting against my, probably my lower teeth because that's what started to shift for my lower central incisors. I went into a DNA appliance, which is like a very bulky thing that you sleep with at night. And I did. I'm not going to lie, I didn't love it. It was even. I wore it for two years and it was bulky and it was in there and I couldn't really keep my mouth closed with it in there. And, you know, anyways, it was for my health and it all made things a lot better. Now I'm an Invisalign. But yeah, it definitely opened my airway and it was able to grow me as an adult. I was able to grow my palate in all directions as well, which is incredible because typically they don't think that you can still get, you know, that growth as an adult, but you can with these appliances. They definitely work. I have the cbcts to prove that my airway drastically, you know, to prove that it drastically improved. But, yeah, it's very interesting, too, because on the flip side, you look at celebrities and you see, like, sexy in our culture is, like, mouth slightly open with these big, plump lips and. Or, like, so we're promoting mouth breathing and. Yeah, that's a little bit confusing. Okay.

And your lips don't look like that if you're a mouth breather, because my kids are mouth breathers and their lips are dry and cracked and look terrible. So don't even tell me.

Yeah, yeah. Oh, yeah, yeah. That's the one thing about Mia is her lips are always dry, and she's always, like, picking them. There's always, like, little pieces of skin, like, you know, coming off. And I'm like, what is going on? I'm like, this is definitely a habit. Lilies was always. She was always red around her lips. So she would pull her lips in and, like, kind of suck on, like, you know, around the lip. And so she would just get raw above the lip, below the lip. And that was. That has since stopped since expanding her. And I think for her, it was an airway issue because, you know, she'd already been released to the point that made sense, at least for her anatomy at that point. And she was still doing it. So I think she was trying to jut her jaw forward to open the airway a bit, and by jutting it forward, kind of like putting your, you know, lip on the other part of the lip or above the lip, it opens the airway a bit for a kid who's got enlarged tonsils. And, you know, we never had her scanned for adenoids, so I don't know if she had enlarged adenoids back. Back when we knew her tonsils were like a three plus. But, yeah, they've. They've since gone down and happy to say that she's doing really well and she's in mayo, and so we're like, fantastic.

I always wonder, my oldest, she before we knew better and about all the things. She had tubes and her tonsils and adenoids removed when she was maybe. Maybe she was 2. She was really young because she was a snorer and. Right. She had all the things. And as I look back I'm like, oh, man, I bet. You know. Yeah. You just all. So much is related that once you start to see that snowball go, you're like, oh, wow. It's all the things.

Oh, yeah. Well, there's such an interesting debate on that, too. You know, you talk to certain ents, and they want the tonsils and adenoids out. We actually had an ENT present for us in the membership a couple months ago, and he's basically in Australia, Dr. David McIntosh. And he's just from. He's phenomenal, but he's all about, you know, getting. Getting them out and fully getting them out. Because he's like, if there's obstructive tissue, you know, you can shave it down, you can try to shrink it, but it can always come back. You know, if you fully remove it, you're at least opening the airway until you can address other issues. And if there are snoring or other things going on, you know, he's. He's all for it. Whereas in the US I took Lily to an ENT who's supposed to be like, the guy here, and he looked, and he was like, tonsils are unimpressive. And I was like, they're. They look, in effect, like they look veiny and kind of unhealthy and like, they're almost touching. I'm kind of very impressed by these, but what do I know? So I was really frustrated as a parent because I was like, ugh. I mean, not that I want to put my child into surgery if I can avoid it. That's definitely not what. But, you know, most parents would have been like, oh, thank goodness we don't have to have surgery. And here I am like, but my child can't breathe, so no medication. No. Just sort of like, let's just monitor. And I was like, okay. I mean, I don't really want to put her on medication either. So I'm kind of happy about that. But I basically brought her home. We started to use Kids X Leer, and we also use. And then she eventually went into her. Her appliance at 4, and then the tonsils shrunk during cold and flu season several months into that appliance. And they've. I've. I've monitored them. They've kind of waxed and waned a little bit, but for the most part, they've stayed small enough that they're not obstructing her airway. And so I'm just. You know, I'm like, that mom was kind of like, let me See in your mouth this month. Let's see what's going on back there.

Fascinating. Oh, my gosh.

So interesting. But yes, we've, we've been big xillary users in this family, not giving medical advice to anybody. It's totally over the counter, but we love that stuff around here, so.

Yeah.

Well, I'm excited for you guys.

Thanks. Me too. Oh, my goodness. It feels like all the things are coming together. It's so frustrating when you have kids who aren't eating and are snoring and aren't sleeping and are choking and you're just like, I don't know how to help you. So it feels like we finally can help them, which is exciting.

Well, thank you so much for sharing your story. I mean, it's so amazing to have parents on here, but I always love having SLP or therapist parents on here too, because I think it's really important to put in perspective and remind everybody that even as therapists, we miss things in our kids or that's not our area of expertise. And, you know, we later find out that it may become our area of expertise. Thank you to our children. That's what happened to me, you know, so. But thank you because I know it's, you know, sometimes parents don't want to put their kids stories out there, but I think the more we talk about this and the more we normalize a not so normal situation, you know, the more parents can actually go out and advocate for what their children need. So thank you. Absolutely. Thanks for having me on.

This was fun.

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