September 5, 2024 • 51 mins
My guest today is mom of three, Jenny Gay. Jenny and her family have been on an airway journey that includes all three of her sons and herself.
In this episode, Jenny shares her ups and downs, tips, and many of the resources she has found along the way. She hopes this information will help other parents in their own airway journeys with their children.
Show Notes
- Dr. George Rivera, DDS: Website
- CAFF Facebook Group: The Airway Huddle
- CAFF Recommended Reading List
- Myofunctional Therapist: Kristen Miller
- Vivos Guide
- IBLCE
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hi everyone, and welcome to another video.
(00:29):
Hi everyone, and welcome back to Airway First, the podcast from the Children's Airway First Foundation.
I'm your host, Rebecca St. James.
In today's episode, I am joined by mom of three, Jenny Gay, and our own parent liaison, Christy Bojinkian.
Along with sharing the personal story of Jenny and her three boys and their airway journey,
(00:54):
she'll also be providing tips and sharing resources that she's found along the way.
So let's jump right in to the conversation that Christy and I had with mom, Jenny Gay.
Awesome. Thank you so much for joining us today, Jenny.
I appreciate you being here and sharing your parent journey with us.
Thanks for having me.
(01:15):
Absolutely. Very excited to hear about your journey and share your knowledge with other parents.
And before we get going today, I just kind of want to formally introduce everyone to Christy.
She is our parent liaison and so many of you speak to her on social media and email, but here she is in the flesh and she will be co-hosting today's episode.
(01:39):
Thanks for having me.
Absolutely. Absolutely. So, Christy, if you want to go ahead and kick things off, that'd be awesome.
Jenny, so I'd just kind of like to hear and start from at whatever point you want to, but like, how did your journey start into the airway world?
(02:03):
So our journey, it was actually kind of by accident.
I have three boys, Odin, he's 14, Cooper is 11 and Silas is five.
Cooper, around the age of, I'd say eight or nine, had an open bite.
And so he had a tongue thrust and just in casual conversation with our dentist, I said, you know, what are we going to do about that?
(02:27):
Is that braces? And he said, no, you need to see a myofunctional therapist.
And I had never heard that word before. So I went home and I Googled and I went into a deep dark hole in the airway dentistry.
So, you know, like when something's going on with my kids, I'm curious by nature, so I research and, you know, read and do all this stuff.
(02:57):
And as I was discovering things about myofunctional therapy, I started to realize the connection to airway dentistry.
And luckily where I live, I'm in the suburbs of Chicago, we have a lot of really great resources around.
And I was able to find a myofunctional therapist, Kristen Miller, pretty easily. And I set up an appointment with her, and we started to work on Cooper's tongue thrust and a little bit of a list.
(03:31):
But as he was going through the therapy, and I was reading all this information about these lists of things that kids have when they have obstructed airways or narrow pellets.
And I started to turn and look at each of my kids and say, oh my gosh, they have that on the checklist and that and that and all these issues that I saw were normal works.
(03:58):
And I myself am a poster child for an obstructed airway going unfixed.
And I have sleep apnea and a whole slew of digestive issues that I've dealt with my whole life.
So as I started to see these things in my children, I started to reflect back and say, oh my gosh, me, I, you know, have a very narrow pallet, and I didn't realize that my whole life I had been struggling.
(04:34):
So then to see my kids checking off all these boxes on these lists of things that weren't healthy on it really kind of panicked me and made me realize that I needed to do something.
How the curiosity, did you have retractive braces or anything when you were growing up? Or have you always snored?
(04:55):
I didn't have braces, and I wasn't like necessarily a big snorer, but I was diagnosed with sleep apnea at 20, so very young.
Thought for a moment that maybe it was a weight issue, because I was also dealing with thyroid issues.
And as the weight came off, it seemed to stabilize and I no longer used a sleep apnea. But then back when I turned 40, I just noticed I was exhausted.
(05:27):
I felt like I was the walking dead. And so I went and got tested again and in fact it had come back.
And I, you know, it's when you start to look into this world, it's like my jaw dropped. I could not believe that these were things that I like hadn't been told by doctors before no one even mentioned.
(05:48):
And when you look at the science, it just makes total sense.
And I always think that they're really lucky that they have a mom with all these problems because I don't know that I would have been so quick to jump on board had I not known what it's like to be someone with such severe, you know, like obstructive sleep issues mostly.
(06:14):
So, so in that way, I feel really lucky that like I'm the guinea pig. I get to give my kids, you know, like a better outcome than I.
Yeah, that's beautiful. Well, not beautiful that you're gonna have a lot of fun, but the better outcome. Yeah. Yeah. And, you know, if you go your whole life thinking, Oh, this is just my normal and then your kids come on the scene and it's just like, Oh, just more normal.
(06:43):
And yeah, no one there to kind of point you in the right direction for sure.
Right. And we hear this all the time normal is not. Okay. Just because you know, you think it's common. It's really not normal. And that's something I think across the board and our messaging we're trying to make sure people understand.
(07:04):
Yeah, yeah. And even just the fact that my dentist and or the boys dentist and mention, you know, that that that open bite needed to be fixed and I was the one serving and caring about it.
It's just a curious thing, you know, that the people just still are not on board. And I, you know, I've heard people for around the word snake oil and like my GP said, Oh, you're paying for someone's college, you know, it's just people are not willing to sort of open their minds to it yet, but I do believe that that's slowly changing.
(07:41):
Yeah, I agree. I agree with that. Yeah. And there are there are two.
I guess three schools out there right now, one that has followed the science makes we know about this. We can see it.
And when you when you when you go through and you look at skulls and you go through archaeology and history, you can I mean, you can see the change, you know when it happened.
(08:07):
And you you lay modern technology on top of it. And there it is.
So there's that school thought, which is where we are, right. But then the two groups that are left, there's this.
Those two groups never learned it in medical school, whatever branch they are. It wasn't taught. So that's, you know, they're at a disadvantage coming out of school. So they're doing what they know.
(08:31):
Sure. And then from that group, you have a group that sees the science and the proof and now changes, they go out of their way because now this is the onus is on them.
They have to go take the additional education, you know, the additional training to become airway centric providers.
And then there's still this outlying group that wasn't taught it still isn't sure.
(08:57):
And that's also the same group that really helping to change the mindset because it's all about collaboration, which I'm sure we'll get to at some point, but they got to get out of their silos and work together so everybody needs to be on board.
Yeah, definitely. It is a team and I feel very lucky with the, you know, the myofunctional therapist Kristen was able to direct us to a airway dentist.
(09:26):
And, you know, and we've almost like created this team of people that are working to correct, you know, my boys, mouths or pellets and tongues and, you know, posture.
So it is definitely a collaborative effort between, you know, several providers.
And you're also very fortunate because Chicago is, I don't know, hotbed's the right word but it is.
(09:55):
Kevin Boyd is sitting there and Larry Children's and, and this just amazing network of collaborative providers and that's really where we hope everybody gets to because you have dentists and E&Ts and pediatricians and sleep experts and myofunctional and occupational therapists and they're all on the same page.
(10:16):
So the fact that there is that much help available actually puts you at advantage that a lot of parents around the country don't have.
Yes, definitely. I, you know, we toss around the idea of moving all the time and one of my requirements is I have to do a place that has airway dentistry or I need, or we need to be able to come back and visit these providers because that's really important.
(10:44):
You know, I feel like I want them to be able to see my children through, not to adulthood but you know like when they're, when they're fully expanded when they're done with their maybe braces.
But yeah, that's important to us.
Sure.
So I know you're saying you kind of looked into myofunctional therapy when with Cooper's open bite. And yeah, the symptom list kind of made you think of your oldest so what did you kind of do from there.
(11:19):
Yeah, so when I was, so Cooper was doing really great he was fixing his tongue thrust and at the same time I was sort of turning to my eldest and he always was like a really excited, wild little guy and I felt like during this time his like light began to.
(11:41):
He was always tired. He was telling me he was exhausted. He would snore every night. And he just like really went internal. It didn't seem like his normal self. And as I was reading these checklists and looking into on, you know, the consequences of obstructed airway.
(12:04):
And I was just like everything pointed to my eldest, and he actually had been expanded before by our dentist but once they expanded him they took it out and then said, that was it will get you braces in a couple of years.
So, any of the follow up no myofunctional therapy nothing like that.
(12:28):
So that expansion began to fail and course yeah.
So I'm kind of like scrambling like I really think I need to also direct my attention my eldest. So, when Cooper was done with the myofunctional therapy.
I said to Chris and Chris and I'm thinking of this thing called airway dentistry. I don't know if you've ever heard of it and she said, Oh yeah, and there's a provider a town away from you.
(12:53):
And so we went and had our visit with Dr. Avara was amazing. And it felt like he was telling me everything that I was thinking and putting into words, all of the frustrations I had all everything just made total sense.
(13:15):
And he could essentially say back to me what I was experiencing or what we were experiencing in our everyday lives.
And, and so we left our dentist, which is a really for me that was a big deal I we actually went to the dentist that I saw as a child who I adored.
(13:37):
He really made on, you know, going to the dentist, like a peaceful and enjoyable process so nobody, you know, had any sort of fear of the dentist. So to leave him was a really big deal for me.
And we left him and switched over to Rivera and immediately started expansion on both Odin and her.
(14:00):
And it's hard of being that advocate though right as a parent. And it's hard to ask the tough questions but then make these kind of tough decisions, and it is tough decision.
It was, it was really hard and I, you know, questioning it the whole time and, and at the same time, just feeling like, no, this is like we're on the brink of something, you know, great, we're on the brink of what everyone else is about to figure out is good for you.
(14:29):
And it just felt right. And you know there's, there's like a definitely a financial component to it. That was hard to sort of get my husband on board, but you know him watching his wife suffer.
It was easier for him to say okay I don't want that for my kids. And so I believe that that helps get on board.
(14:53):
And so, at the same time you left your dentist or maybe even since then did you tell the dentist anything like oh this is why we're leaving.
No, didn't really we just ended up not we didn't have like a follow up appointment scheduled and at that point I'm just like I'm just going to make my way over here.
(15:19):
So tell me about how their expansion went and how any changes when you started noticing noticing them and how old were Odin and Cooper.
I believe he was like 11 or 12 and Cooper I believe was nine. So for Odin it was sixth grade when we started, or sorry, right after sixth grade. And sixth grade was especially hard for him.
(15:49):
He was just lost all the time he was home all the time didn't hang out with friends was having some real difficulties in school with his grades.
But once we got the expansion I believe it was like summer between the six and seven.
The, the difference and how quickly you notice it was kind of astonishing. And I'm looking at my husband like, is this is this real, you know, because it felt like once we got the expanders and it was like within a month that we noticed a difference with our boys.
(16:24):
They both were sleeping better not snoring on all of a sudden Odin had a little bit more energy he was interested in sports he had never been interested before.
And we just sort of like sat back and watched and were amazed that what was supposed to happen was happening.
And also, you know, felt really good about like this is what you know this is what we wanted for them.
(16:50):
So that was really cool to see with Odin.
Yeah.
Yeah, did they buy and we hear this sometimes but not always.
Did they voice.
Any, any thoughts that made you think you know they're realizing there's a change they're feeling it and seeing it in themselves.
(17:12):
I think so and I, yes, they did. And I think that on it, it was maybe more slow for them to realize but I, and my husband noticed it right away.
And we, we like, were a very open family so we talked about it a lot like in order to get them on board. You know we're, I mean it was more like this is what we're doing but this is why we're doing it and they agree, you know, like they felt like okay that sounds
(17:41):
legit. So it was kind of easy to get them on board. And they're really good boys and they just like they went along with it. It wasn't always easy, you know it's not the most comfortable thing in the world.
But, um, yeah, you're talking about the tightening that you have to do. Yeah.
And you know, they're not just the four spots and but you know they're troopers and they went through it and it's amazing to see just the difference between Odin in sixth grade and Odin now so he's entering on freshman year of high school.
(18:14):
And he's made a huge group of friends. He's always out doing something. He doesn't complain about being tired. He has had straight A's for the past two years. He is just excelling in basketball and he's excelling at track.
He is a like a sprinter now and he just qualified for the junior Olympics last weekend.
(18:36):
So I go Odin. I have to say as a mom when I hear this and it not to be completely cheesy but I get very emotional. I mean this is a child that is suddenly thriving and as a parent what more could you want?
Absolutely. That's all I wanted. And I just back and I look and I'm like how did this happen? This is amazing.
(18:59):
And I you know it felt like back then it was a struggle. You know we were like just trying to pull his personality, trying to pull some hobbies or something that brought him joy out of him and now if he is just thriving.
And I absolutely think that this whole process, the expansion, the mile, the tongue release it all has sort of set him in the direction to speed.
(19:35):
Yes, that's beautiful. So is he all done with mile?
He's all done with mile. He had it released last summer and he is just on the tail end of braces and he's got a beautiful wide Julia Robert smile and is just really thriving. I'm just so proud and it's been so fun to watch.
(19:57):
Yeah.
So fun to see about it. Yeah, sorry.
Living it. Yeah, that's awesome. How about how Silas going?
So Silas, we're so we are Cooper.
He's doing awesome. He picked up the guitar recently. He's doing a much.
(20:20):
So, you know, we've got the athlete and the musician. I'm just so proud of these boys and they have really, really good about, you know, doing like, sorry, Cooper is currently in a Vivo's guide.
So he finished expansion. He's in a Vivo's guide and then eventually we'll probably do aligners.
He had.
(20:41):
Yeah, go ahead.
I'm sorry, which I know you've got the Vivo's for the guy, but which expanders did you guys go with?
I'm not sure what they were. They were the acrylic type. They were the med with the with the like the Marpe something like that.
There was no screws.
Okay.
So, I believe they were like young enough at the time to not include screws on our according to Dr. Vera.
(21:11):
And, and they expanded beautifully. I'm so impressed. But he is doing great and he, yeah, I'm just I Cooper has been easy.
You know, he's really good about wearing his Vivo's. He's really good about doing the my own functional exercises.
So I'm super proud of him. We did Cooper and Odin at the same time, because those are our older boys and younger and we were thinking, oh yeah, yeah, we'll get to him.
(21:42):
He'll definitely do expansion, but we'll get to him later.
But then this past year, sort of suddenly like over a course of a few months, his sleeping became just horrendous. He went from, you know, sleeping normally mouth closed. And then suddenly he was gnawing mouth open, just fighting in his sleep,
(22:06):
and he was constantly moving. And he started to get big circles under his eyes and he was just exhausted and I said to my husband, we have to do it now. You know, I, I kind of thought we could wait, but the more I learn about early dentistry, I do see how important it is to sort of like catch it early.
So he's five. So he just
(22:30):
He's in that sweet spot then. So it should be easier, right?
And we put it in the, this is amazing. We put in the expander, and he has enlarged adenoids. So on top of that, we put in the expander within a week or two of turns, he stops snoring.
So it went up. Wow.
(22:53):
Amazing.
It's unbelievable. But I, and I'm just, I'm so glad that we're with Dr. Vera, he is just really on top of, you know, getting you where you need to be and supporting you the whole way.
And always providing information and new information. When you first hook up with him and he makes it, you know, the pre exam, then he will zoom with you and it's about an hour and a half to do more.
(23:26):
He just lays out all the science on what's going on with your child specifically and how he can help them.
That's amazing. Go Dr. Rivera. I love his energy.
Totally. It's amazing.
Yeah. So maybe just for like the other parents out there, kind of how did you prep the boys for expansion or tongue tire releases or any other little tidbits you can share with us.
(23:59):
Sure. So because we had such a great Dennis before this who maybe wasn't up on the science, but he was a really good Dennis.
They had really good experience going to the Dennis. So they weren't afraid sort of of entering into this world. I felt like they felt pretty comfortable.
And just really shared with them, educated them on why we're doing it and how this can benefit them. And I think, you know, my boys being tired. I think it really affected them. And I think they didn't want to feel like that anymore.
(24:37):
With the tongue release, it really helped to have a good mild functional therapist. Just guiding them through and reassuring them that that as much as it was a big deal, it wasn't a big deal at the same time.
And, you know, having this group of providers that really care about your kids and want the best outcome that has been just priceless. I can't express how much that has helped my kids go through this, despite the fact that it can be, you know, a little bit difficult at times.
(25:12):
They always heard and.
You know, and I got to say, I want to give you and your husband, by the way, huge kudos because you did something just instinctively.
Dr. Boyd tells parents all the time.
Yes.
Sit down, talk to your child, let them know what's coming and why.
(25:35):
Yeah.
And children instinctively want to please us. So that already gets them on board. But then when you can talk to them about it, it's not as scary.
And then to boot, you've got an amazing provider and my functional therapist. So that helps as well. But, you know, as a parent, it's not always easy.
But I think in this case, that is definitely the way to go.
(25:58):
Yeah, collaborative, right? They feel like they're part of the process.
Absolutely. Yeah, absolutely. And yes, definitely, like they're doing something. And Dr. Vera always remembers to give them kudos for, you know, like sticking in there and really putting up with it.
And doing their exercises. He remembers to really praise them because it, you know, as much.
(26:22):
Yeah, it's important as much as I'm having them do this. They're the ones that are really, you know, having, having this personal experience. Yeah.
Yeah, yeah, you guys have an amazing team. But yeah, parents, you guys are part of that team.
Yeah.
Yeah, so kind of looking back on their like infancy and toddler hood, were there any clues that might have ticked you off then? Had you known at the time?
(26:54):
Yeah, oh my gosh. So Odin was my first and he, we had such incredible difficulty breastfeeding.
He, I went to the doctor said I think he has a tongue tie, they sort of brushed me off. I had a lactation specialist come. I said, he has a tongue tie, she brushed me off.
(27:16):
It was really frustrating because it felt near impossible. And, you know, we, we ended up doing these exercises with the lactation specialist where we put our fingers in his mouth and pull his jaw down.
And my husband and I look back at that and we're like, what were we doing? You know, we were just trusting someone who we saw knew more than us. But in hindsight, that was crazy. And he just he probably needed a tongue release.
(27:45):
And, you know, we weren't sort of getting the, like the right response, I believe, I think people brush off tongue ties. That's something that I think often gets overlooked.
And I think that comes back to some of the certification just to interject because we've talked about this before and a couple of podcasts and, and the guests were very clear, which I didn't know this either. Right. When I had kids, I didn't know I was working with a lactation consultant from the hospital.
(28:18):
Yes.
But many of them are not certified the same way and I see, I always say this one, I see BLC, IBCLC.
Yeah, I'll put the right link at our show notes. But that particular group does understand, you know, airway and tongue ties and jaw development, especially when it comes to the importance of breastfeeding.
(28:41):
It's a very different group. And so this is a great example of how do you work with someone that was certified.
If you would have had a very different approach and probably a very different outcome. Yeah. Again, this goes back to you don't know what you don't know as moms.
This is the person we're supposed to be working with, but this was just a person the hospital designated. They weren't necessarily trained and certified.
(29:06):
Yes, exactly. Yeah. And, you know, and being a first time mom, it's just like everything is overwhelming. Yes.
But we stuck it out and I breastfed him for a year.
And then for Cooper Cooper and Silasworth were a lot easier.
(29:28):
But all of my kids actually ended up needing like baby Zantac or stuff for like a heartburn or a sort of a colicky disposition. That was probably an indication of, you know, the wrong development in their mouth.
(29:49):
So, yeah, they somehow it gets extra air in there.
Yeah.
(30:23):
You can find out more about the Children's Airway First Foundation and our mission to fix before six on our website at Children's Airway First dot org.
The CAF website offers tons of great resources for both parents and medical professionals.
(30:45):
Visit our parents portal clinicians corner resource center and video library to see for yourself.
We also encourage parents to join the airway huddle our Facebook support group, which was created for parents of children with airway and sleep related issues.
You can access the airway huddle support group at Facebook dot com backslash groups backslash airway huddle.
(31:09):
As a reminder, this podcast and the opinions expressed here are not a medical diagnosis.
If you suspect your child might have an airway issue, contact your pediatric airway dentist or pediatrician.
And now let's jump back into today's episode.
(31:50):
So you're right to know that there was something that we could have done at that time when they were babies, just as like astonishing that there wasn't someone that sort of held our hand and brought us to that.
You feel like it's like looking to the doctors to tell you what to do.
So,
(32:11):
And this is where we always tell people this is where you take that mom guilt or dad guilt. You got to decide because you didn't know an unfairness to most of these pediatricians and dentists and lactation consultants.
They didn't know. I mean, you know, we're just now starting to see this change.
So as a parent, it's hard because you think, well, how to only known, but we didn't see you've got to start from where you are, which is really what you and your husband have done.
(32:40):
Yeah, my mom has apologized to me for not having my airway.
Yeah, mom that was not even a thing, you know, when I was younger that would have never have come to your mind.
So I'm standing right now with Dr. Rivera as an adult and I'm really happy with just like the little amount of time that I'm doing it is the results are feeling really amazing.
(33:09):
It's just my ability to breathe. Yeah.
Yeah, how's your sleep.
It's better. It's, yeah, it's a lot better. And I still wear a CPAP but my numbers are going down as in, you know, how many events I have every night.
That's awesome.
Yeah.
(33:31):
What about your husband is he thinking about it.
I'm last on the list.
So, yeah, I don't know if he could use expansion as well but he's like, I'm last.
Talk to me when else is done.
(33:52):
Yeah, so, I mean, besides your like amazing team, did you have any resources you found helpful along the way or that you're loving now.
Like, it's like, I was thinking about this social media, it can be really harmful but in some ways it can be amazing resource for, you know, it's kind of like a collective of everyone else's experiences.
(34:15):
So, I found a lot of my own functional therapists on Instagram that are really helpful on this in terms of like steps in the process of early dentistry.
You know, that there is like a team that you have to create with the dentist, the my own functional therapist, the person that releases a tongue.
(34:42):
And when I was first, you know, just like kind of delving into this world, a lot of they bring to attention a lot of the things that you should be looking out for the red flags with your kids.
So I found them really, really helpful.
I would second that, by the way, because the myos have done so much heavy lifting, in my opinion, when it comes to this topic, they put so much information just collectively on Instagram and a few on TikTok,
(35:14):
even down to showing you, oh, you know, this is what this technique or exercise should look like.
And here's tips to help your kids get through this and oh, if this hurts, here's some things you can use. I mean, it's just amazing how much knowledge they're sharing freely shows you their commitment to this, I think.
Absolutely. Yeah. Yeah, there's one girl I want to say her healthy life, healthy mouth. I'm not sure. I think it's something like that.
(35:43):
Yeah, exactly. Yeah, we've got her. We'll put her link in there.
And she makes it fun. So she like, she'll do sort of an examination of celebrities. And so, yes, yes.
Like, this is interesting, you know, and then you all, I have that or yeah, as that.
(36:07):
That's where I learned about the gap when you smile. If you see a big gap.
And I hate to say, I think it was Prince Charles she put up there. Or no, or or.
Yeah, it was will it. Maybe it was William, but it was beautiful, wide smile. And there's a gap. And I was like, really?
Yeah.
How would you know? So now I'm looking at people every time they smile.
(36:30):
Yes, yes. I know when I, when we first heard of her, he was like, Oh, you're going to leave this office and you're going to be like, you need a redist.
You need a redist. And I do. I see it.
You didn't know when someone, you know, needs to be expanded. Yes.
What other resources did you find helpful?
(36:53):
You know, I did a lot of the resources from Dr. Vera anytime he like curious about a podcast or YouTube video, he'll send it my way.
And it's, it's at the point where like, I don't need any convincing. But every time he sends me something, I'm like, see, see, or yes, that's it. Or, of course, this makes total sense.
(37:17):
So always been such an amazing resource.
Yeah, so I think it's mostly like social media and resources through Dr. Vera.
Awesome. That's what you want from a provider to be giving you all the resources not to just say, you know, this is how it, or this is normal. It's like, well, show me, you know, yeah.
(37:41):
And when you have the information, you can make that informed decision. And I think that's really, that's the turning point, right? You've got to empower parents with the information.
Because otherwise you're just, you're just following blindly.
Yes, totally. And that, you know, and that was like, even from the start, it was, I can't imagine not sort of experiencing the things I've been through. And then starting this process.
(38:09):
I think that that helped immensely. So I give props to parents who themselves aren't suffering, but they do this for their kids anyways. Because even though it makes total sense to me, to my husband, I could see how it would kind of be like, this real, does this is this legitimate.
Because there aren't so many people on board yet. I do think that that's coming. I see it in social media too. People are, oh, this makes total sense.
(38:42):
But until that happens, you do kind of feel like you're on the forefront of, you know, some like medical frontier or something, you know, it's, it's, yeah, it's interesting, but it makes, there's nothing that makes more sense to me.
Than this. And it's interesting. I, when I spoke with with Dr. Hilary Pada, who's her podcast comes out today, in fact, it's funny because it all seems to have started bubbling up somewhere around 2018.
(39:13):
Okay, 17 2018. She was the first provider, after speaking with her that made me say, you know what, so glad we had the pandemic, because she actually said had it not been for that. You know, they, she was just starting to learn, and you went into lockdown.
What else was she going to do? She dove in as did her team online courses, like with the Breathe Institute and some other places and and reading everything she could get her hands on, like breath from James Nester or anything by Felix Liao and and you know,
(39:52):
Susan Maples, but I just like everything changed during she had that time period to focus. Yeah. And I think that happened to a lot of providers.
Yes, yes. That I mean, I think that's why it's accelerating all of a sudden because it just I mean literally 2017 2018 is when it just kind of started bubbling up.
Yes. And I think that's what catapulted it.
(40:13):
Yeah, you know, because I completely agree because I had looked before those Buckel corridors. Is that what they call them?
Yeah, the Buckel, like Googling that like, I don't like these. Well, how do I get rid of them? You know, and nothing ever said anything about your palate size or shape.
(40:35):
It was all cosmetic. But I always felt like that wasn't normal, you know, and, and it having a bigger component than just cosmetic, having like, you know, an effect on everything the space that I have in my mouth for my tongue I've always felt like I had no space.
And so it all makes total sense and I'm so glad that people are catching on.
(40:58):
Yeah, you always hear people like, oh, my tongue is too big for my mouth. And it's like, oh, I'm sorry.
All the way around.
Yeah, the other the other interesting thing that's come out of this, I don't know how many people because I was one of them and you know, you know, my background, I didn't know, even with my background.
What do you mean your tongue supposed to be on the roof of your mouth?
(41:20):
What? No, my way down here. What are you talking about? Well, now it's up here.
Yes.
But that's suddenly something that parents are talking about. None of us knew.
Yeah.
And having to break 40 years of a bad habit has been difficult. But it's always on the forefront of my mind. I know how important it is. Yeah.
(41:41):
And wait till you get to the day that you don't think about it anymore and you're.
Hypothetically just sitting there watching TV and you're going.
My tongue's in the.
You know, you just it dawns on you because you're just so used to checking it and oh, look, it's already there.
Yeah. Yeah. I can't wait.
So have you had a chance to maybe to like talk to any other parents at school? Have they maybe asked about any of the extension or anything?
(42:11):
So I have had on. Well, okay. So I'll say immediately when I left Dr. Vera's office for our first visit called up my sister said, you're bringing your kids here.
So she brought her three kids to Dr. Vera pretty much right after mine.
All of her kids have gotten expanded pretty much in the same timeline as my kids, which is just awesome.
(42:36):
Awesome. Yeah. Also sort of experiences the state she's a neuro palette and the same issues that I've had.
So it just made total sense for us. I didn't have to sell her on it at all. She was like, yep, that's what we're doing.
Um, you know, I'm not one to like push something. I do feel like the proof is in the pudding. Like I let kid I tell people about what we're doing.
(43:01):
I let them see how much my kids are, you know, just they're successful. They're doing great. They're thriving. And I kind of feel like that speaks for itself.
Um, I think that I told a couple of parents who had difficulty sort of like getting on board and didn't understand.
(43:24):
Um, but I just I just keep, you know, like telling people how we got to where we got. And I think that that sort of proves in itself, you know, how much this works and how legitimate it is.
Yeah.
And I'm with you. I can't wait for the message to get out and it's kind of hard when you're standing at the grocery store and you're in line and you look over and like a lot of kids needs it.
(43:50):
And you can't say anything. But you as a mom, you just want to go hug them and take the mom's phone and look up the website and go, here you go.
Yes.
But I'm really looking forward to the day that we had, we had our first PTA reach out to us.
And shockingly, it was a high school. I was thinking, well, it'd be better if it's elementary, but let's start right because we can still save them, right?
(44:16):
Yeah.
And we made some flyers and send it over and I cannot wait for the day that every PTA in America, especially the elementary schools, emails us and said, could we have some flyers?
Because I think that from the parent front, it's going to take something like that to really turn the ship and have more of these airway mama bears.
(44:38):
Yeah.
Charge out.
Definitely. Yeah.
Yeah. And you know, it's like, I do see in regular dentistry, they are using the expanders, but they're missing the next step. And so I feel like maybe it's just the slow roll where they sort of start to understand that you need all these components to work together in order for it to be successful.
(45:03):
Yes. Yeah. I think a slow roll.
Because yeah, yeah, well trained up by you.
Yeah, exactly.
So along the way, did you run into, I mean, I'm sure you did, but did you run into any of this, you know, let's grow out of it, or let's just wait and see anyone and how did you approach or handle those kind of responses.
(45:30):
So, like with my general practitioner that I take my boys to she was the one that made the comment when I told her about what we're doing and why we're doing it. She sort of rolled her eyes and said, Oh, you're paying for someone's college haha.
You know, and I just, I felt like I don't really need to convince anyone just watch us. You know, like, that's fine say what you will I'm not going to convince you otherwise, because you know you're a doctor and you maybe weren't trained and don't believe in this.
(46:03):
But, you know, like I said, these kids are doing so well. And I attribute that shift in in their lives to around the time of expansion and unreleased the mile that it's it's just proof that it works.
So, yeah, I mean, I, I feel like there's only so much convincing you can do. And besides that it's like, we were just we're doing so well because of it.
(46:32):
So, you know, there's the proof.
Yeah, I love I love that. So typically at the end of every episode, we always hand it back to our guests to leave the final word for our parents. So I'll turn that over to you.
Um, I didn't think about that. Um, you know, I think it's hard to financially and I'm wise and just everything that your kids go through with this sort of expansion my oh and tongue release.
(47:11):
But I feel like as far as, you know, things that I've passed on or given to my kids, this is one of the best gifts I've ever given them.
To have a future where they don't need to worry about CPAP where they be irregular where all of the systems in their body work properly. And just to be able to give my kids that just feels like the biggest blessing ever.
(47:41):
Um, and, you know, if you can find a group of providers who can walk you through this, I promise it's worth every penny. And all the time.
It's just something that I think is as parents you just want your kids to be and this is like the biggest step towards that.
(48:06):
So yay, are we dentistry? Yay, are we dentistry? Yeah. And so and I would also encourage parents if you haven't already check out our website.
We have a recommended reading list, which is phenomenal. I don't think you can go on with any of the books, but we typically guide parents towards, you know, a couple out of the gate like Susan Maples, brave parents that really is wonderful.
(48:32):
Dr. Sharon Limbs, Breathe Sleep Thrive Phenomenal and Sharon Moore's Sleep Right Kits.
Start there and then if you want to elevate, dig into some of the others that are really detailed like, you know, anything from Dr. Liao or Dr. Gelb's books.
(48:53):
I mean, just have at it. But if you start just with these, you know, three or four, you really get a good sense for it.
Or if you're looking for a group, you can join the Airway Huddle, which is our parent support group.
So you can talk to other parents like Jenny who've walked this walk already and can share, I don't know, advice tips, even recommend other professionals, dentists, myopunctional therapists that you could check out.
(49:20):
And also if you're stuck or if you have questions, we encourage you to reach out to Christie because she is our parent liaison.
And she can help you with so much so you can reach her at Christie at Children's Airway First.org or at info at Children's Airway First.org.
(49:42):
Yes, love to hear from you guys.
Yeah, so thank you so much, Jenny, for coming on and sharing your journey. It was wonderful to meet you and to hear your stories and we're thrilled to hear how well you and the boys are doing.
Thank you. Thank you so much, ladies. It was so fun to talk about this.
Yeah, thank you.
(50:29):
Children's Airway First.org.
Today's episode was written and directed by Rebecca St. James, video editing and promotion by Ryan Draughan and guest outreach by Christie Bojinkan.
And finally, thanks to all the parents and medical professionals out there that are working hard to help make the lives of kids around the globe just a little bit better.
(50:52):
Take care, stay safe and happy breathing, everyone.
(51:22):
Thank you.
Hi everyone, and welcome to another video.
(00:29):
Hi everyone, and welcome back to Airway First, the podcast from the Children's Airway First Foundation.
I'm your host, Rebecca St. James.
In today's episode, I am joined by mom of three, Jenny Gay, and our own parent liaison, Christy Bojinkian.
Along with sharing the personal story of Jenny and her three boys and their airway journey,
(00:54):
she'll also be providing tips and sharing resources that she's found along the way.
So let's jump right in to the conversation that Christy and I had with mom, Jenny Gay.
Awesome. Thank you so much for joining us today, Jenny.
I appreciate you being here and sharing your parent journey with us.
Thanks for having me.
(01:15):
Absolutely. Very excited to hear about your journey and share your knowledge with other parents.
And before we get going today, I just kind of want to formally introduce everyone to Christy.
She is our parent liaison and so many of you speak to her on social media and email, but here she is in the flesh and she will be co-hosting today's episode.
(01:39):
Thanks for having me.
Absolutely. Absolutely. So, Christy, if you want to go ahead and kick things off, that'd be awesome.
Jenny, so I'd just kind of like to hear and start from at whatever point you want to, but like, how did your journey start into the airway world?
(02:03):
So our journey, it was actually kind of by accident.
I have three boys, Odin, he's 14, Cooper is 11 and Silas is five.
Cooper, around the age of, I'd say eight or nine, had an open bite.
And so he had a tongue thrust and just in casual conversation with our dentist, I said, you know, what are we going to do about that?
(02:27):
Is that braces? And he said, no, you need to see a myofunctional therapist.
And I had never heard that word before. So I went home and I Googled and I went into a deep dark hole in the airway dentistry.
So, you know, like when something's going on with my kids, I'm curious by nature, so I research and, you know, read and do all this stuff.
(02:57):
And as I was discovering things about myofunctional therapy, I started to realize the connection to airway dentistry.
And luckily where I live, I'm in the suburbs of Chicago, we have a lot of really great resources around.
And I was able to find a myofunctional therapist, Kristen Miller, pretty easily. And I set up an appointment with her, and we started to work on Cooper's tongue thrust and a little bit of a list.
(03:31):
But as he was going through the therapy, and I was reading all this information about these lists of things that kids have when they have obstructed airways or narrow pellets.
And I started to turn and look at each of my kids and say, oh my gosh, they have that on the checklist and that and that and all these issues that I saw were normal works.
(03:58):
And I myself am a poster child for an obstructed airway going unfixed.
And I have sleep apnea and a whole slew of digestive issues that I've dealt with my whole life.
So as I started to see these things in my children, I started to reflect back and say, oh my gosh, me, I, you know, have a very narrow pallet, and I didn't realize that my whole life I had been struggling.
(04:34):
So then to see my kids checking off all these boxes on these lists of things that weren't healthy on it really kind of panicked me and made me realize that I needed to do something.
How the curiosity, did you have retractive braces or anything when you were growing up? Or have you always snored?
(04:55):
I didn't have braces, and I wasn't like necessarily a big snorer, but I was diagnosed with sleep apnea at 20, so very young.
Thought for a moment that maybe it was a weight issue, because I was also dealing with thyroid issues.
And as the weight came off, it seemed to stabilize and I no longer used a sleep apnea. But then back when I turned 40, I just noticed I was exhausted.
(05:27):
I felt like I was the walking dead. And so I went and got tested again and in fact it had come back.
And I, you know, it's when you start to look into this world, it's like my jaw dropped. I could not believe that these were things that I like hadn't been told by doctors before no one even mentioned.
(05:48):
And when you look at the science, it just makes total sense.
And I always think that they're really lucky that they have a mom with all these problems because I don't know that I would have been so quick to jump on board had I not known what it's like to be someone with such severe, you know, like obstructive sleep issues mostly.
(06:14):
So, so in that way, I feel really lucky that like I'm the guinea pig. I get to give my kids, you know, like a better outcome than I.
Yeah, that's beautiful. Well, not beautiful that you're gonna have a lot of fun, but the better outcome. Yeah. Yeah. And, you know, if you go your whole life thinking, Oh, this is just my normal and then your kids come on the scene and it's just like, Oh, just more normal.
(06:43):
And yeah, no one there to kind of point you in the right direction for sure.
Right. And we hear this all the time normal is not. Okay. Just because you know, you think it's common. It's really not normal. And that's something I think across the board and our messaging we're trying to make sure people understand.
(07:04):
Yeah, yeah. And even just the fact that my dentist and or the boys dentist and mention, you know, that that that open bite needed to be fixed and I was the one serving and caring about it.
It's just a curious thing, you know, that the people just still are not on board. And I, you know, I've heard people for around the word snake oil and like my GP said, Oh, you're paying for someone's college, you know, it's just people are not willing to sort of open their minds to it yet, but I do believe that that's slowly changing.
(07:41):
Yeah, I agree. I agree with that. Yeah. And there are there are two.
I guess three schools out there right now, one that has followed the science makes we know about this. We can see it.
And when you when you when you go through and you look at skulls and you go through archaeology and history, you can I mean, you can see the change, you know when it happened.
(08:07):
And you you lay modern technology on top of it. And there it is.
So there's that school thought, which is where we are, right. But then the two groups that are left, there's this.
Those two groups never learned it in medical school, whatever branch they are. It wasn't taught. So that's, you know, they're at a disadvantage coming out of school. So they're doing what they know.
(08:31):
Sure. And then from that group, you have a group that sees the science and the proof and now changes, they go out of their way because now this is the onus is on them.
They have to go take the additional education, you know, the additional training to become airway centric providers.
And then there's still this outlying group that wasn't taught it still isn't sure.
(08:57):
And that's also the same group that really helping to change the mindset because it's all about collaboration, which I'm sure we'll get to at some point, but they got to get out of their silos and work together so everybody needs to be on board.
Yeah, definitely. It is a team and I feel very lucky with the, you know, the myofunctional therapist Kristen was able to direct us to a airway dentist.
(09:26):
And, you know, and we've almost like created this team of people that are working to correct, you know, my boys, mouths or pellets and tongues and, you know, posture.
So it is definitely a collaborative effort between, you know, several providers.
And you're also very fortunate because Chicago is, I don't know, hotbed's the right word but it is.
(09:55):
Kevin Boyd is sitting there and Larry Children's and, and this just amazing network of collaborative providers and that's really where we hope everybody gets to because you have dentists and E&Ts and pediatricians and sleep experts and myofunctional and occupational therapists and they're all on the same page.
(10:16):
So the fact that there is that much help available actually puts you at advantage that a lot of parents around the country don't have.
Yes, definitely. I, you know, we toss around the idea of moving all the time and one of my requirements is I have to do a place that has airway dentistry or I need, or we need to be able to come back and visit these providers because that's really important.
(10:44):
You know, I feel like I want them to be able to see my children through, not to adulthood but you know like when they're, when they're fully expanded when they're done with their maybe braces.
But yeah, that's important to us.
Sure.
So I know you're saying you kind of looked into myofunctional therapy when with Cooper's open bite. And yeah, the symptom list kind of made you think of your oldest so what did you kind of do from there.
(11:19):
Yeah, so when I was, so Cooper was doing really great he was fixing his tongue thrust and at the same time I was sort of turning to my eldest and he always was like a really excited, wild little guy and I felt like during this time his like light began to.
(11:41):
He was always tired. He was telling me he was exhausted. He would snore every night. And he just like really went internal. It didn't seem like his normal self. And as I was reading these checklists and looking into on, you know, the consequences of obstructed airway.
(12:04):
And I was just like everything pointed to my eldest, and he actually had been expanded before by our dentist but once they expanded him they took it out and then said, that was it will get you braces in a couple of years.
So, any of the follow up no myofunctional therapy nothing like that.
(12:28):
So that expansion began to fail and course yeah.
So I'm kind of like scrambling like I really think I need to also direct my attention my eldest. So, when Cooper was done with the myofunctional therapy.
I said to Chris and Chris and I'm thinking of this thing called airway dentistry. I don't know if you've ever heard of it and she said, Oh yeah, and there's a provider a town away from you.
(12:53):
And so we went and had our visit with Dr. Avara was amazing. And it felt like he was telling me everything that I was thinking and putting into words, all of the frustrations I had all everything just made total sense.
(13:15):
And he could essentially say back to me what I was experiencing or what we were experiencing in our everyday lives.
And, and so we left our dentist, which is a really for me that was a big deal I we actually went to the dentist that I saw as a child who I adored.
(13:37):
He really made on, you know, going to the dentist, like a peaceful and enjoyable process so nobody, you know, had any sort of fear of the dentist. So to leave him was a really big deal for me.
And we left him and switched over to Rivera and immediately started expansion on both Odin and her.
(14:00):
And it's hard of being that advocate though right as a parent. And it's hard to ask the tough questions but then make these kind of tough decisions, and it is tough decision.
It was, it was really hard and I, you know, questioning it the whole time and, and at the same time, just feeling like, no, this is like we're on the brink of something, you know, great, we're on the brink of what everyone else is about to figure out is good for you.
(14:29):
And it just felt right. And you know there's, there's like a definitely a financial component to it. That was hard to sort of get my husband on board, but you know him watching his wife suffer.
It was easier for him to say okay I don't want that for my kids. And so I believe that that helps get on board.
(14:53):
And so, at the same time you left your dentist or maybe even since then did you tell the dentist anything like oh this is why we're leaving.
No, didn't really we just ended up not we didn't have like a follow up appointment scheduled and at that point I'm just like I'm just going to make my way over here.
(15:19):
So tell me about how their expansion went and how any changes when you started noticing noticing them and how old were Odin and Cooper.
I believe he was like 11 or 12 and Cooper I believe was nine. So for Odin it was sixth grade when we started, or sorry, right after sixth grade. And sixth grade was especially hard for him.
(15:49):
He was just lost all the time he was home all the time didn't hang out with friends was having some real difficulties in school with his grades.
But once we got the expansion I believe it was like summer between the six and seven.
The, the difference and how quickly you notice it was kind of astonishing. And I'm looking at my husband like, is this is this real, you know, because it felt like once we got the expanders and it was like within a month that we noticed a difference with our boys.
(16:24):
They both were sleeping better not snoring on all of a sudden Odin had a little bit more energy he was interested in sports he had never been interested before.
And we just sort of like sat back and watched and were amazed that what was supposed to happen was happening.
And also, you know, felt really good about like this is what you know this is what we wanted for them.
(16:50):
So that was really cool to see with Odin.
Yeah.
Yeah, did they buy and we hear this sometimes but not always.
Did they voice.
Any, any thoughts that made you think you know they're realizing there's a change they're feeling it and seeing it in themselves.
(17:12):
I think so and I, yes, they did. And I think that on it, it was maybe more slow for them to realize but I, and my husband noticed it right away.
And we, we like, were a very open family so we talked about it a lot like in order to get them on board. You know we're, I mean it was more like this is what we're doing but this is why we're doing it and they agree, you know, like they felt like okay that sounds
(17:41):
legit. So it was kind of easy to get them on board. And they're really good boys and they just like they went along with it. It wasn't always easy, you know it's not the most comfortable thing in the world.
But, um, yeah, you're talking about the tightening that you have to do. Yeah.
And you know, they're not just the four spots and but you know they're troopers and they went through it and it's amazing to see just the difference between Odin in sixth grade and Odin now so he's entering on freshman year of high school.
(18:14):
And he's made a huge group of friends. He's always out doing something. He doesn't complain about being tired. He has had straight A's for the past two years. He is just excelling in basketball and he's excelling at track.
He is a like a sprinter now and he just qualified for the junior Olympics last weekend.
(18:36):
So I go Odin. I have to say as a mom when I hear this and it not to be completely cheesy but I get very emotional. I mean this is a child that is suddenly thriving and as a parent what more could you want?
Absolutely. That's all I wanted. And I just back and I look and I'm like how did this happen? This is amazing.
(18:59):
And I you know it felt like back then it was a struggle. You know we were like just trying to pull his personality, trying to pull some hobbies or something that brought him joy out of him and now if he is just thriving.
And I absolutely think that this whole process, the expansion, the mile, the tongue release it all has sort of set him in the direction to speed.
(19:35):
Yes, that's beautiful. So is he all done with mile?
He's all done with mile. He had it released last summer and he is just on the tail end of braces and he's got a beautiful wide Julia Robert smile and is just really thriving. I'm just so proud and it's been so fun to watch.
(19:57):
Yeah.
So fun to see about it. Yeah, sorry.
Living it. Yeah, that's awesome. How about how Silas going?
So Silas, we're so we are Cooper.
He's doing awesome. He picked up the guitar recently. He's doing a much.
(20:20):
So, you know, we've got the athlete and the musician. I'm just so proud of these boys and they have really, really good about, you know, doing like, sorry, Cooper is currently in a Vivo's guide.
So he finished expansion. He's in a Vivo's guide and then eventually we'll probably do aligners.
He had.
(20:41):
Yeah, go ahead.
I'm sorry, which I know you've got the Vivo's for the guy, but which expanders did you guys go with?
I'm not sure what they were. They were the acrylic type. They were the med with the with the like the Marpe something like that.
There was no screws.
Okay.
So, I believe they were like young enough at the time to not include screws on our according to Dr. Vera.
(21:11):
And, and they expanded beautifully. I'm so impressed. But he is doing great and he, yeah, I'm just I Cooper has been easy.
You know, he's really good about wearing his Vivo's. He's really good about doing the my own functional exercises.
So I'm super proud of him. We did Cooper and Odin at the same time, because those are our older boys and younger and we were thinking, oh yeah, yeah, we'll get to him.
(21:42):
He'll definitely do expansion, but we'll get to him later.
But then this past year, sort of suddenly like over a course of a few months, his sleeping became just horrendous. He went from, you know, sleeping normally mouth closed. And then suddenly he was gnawing mouth open, just fighting in his sleep,
(22:06):
and he was constantly moving. And he started to get big circles under his eyes and he was just exhausted and I said to my husband, we have to do it now. You know, I, I kind of thought we could wait, but the more I learn about early dentistry, I do see how important it is to sort of like catch it early.
So he's five. So he just
(22:30):
He's in that sweet spot then. So it should be easier, right?
And we put it in the, this is amazing. We put in the expander, and he has enlarged adenoids. So on top of that, we put in the expander within a week or two of turns, he stops snoring.
So it went up. Wow.
(22:53):
Amazing.
It's unbelievable. But I, and I'm just, I'm so glad that we're with Dr. Vera, he is just really on top of, you know, getting you where you need to be and supporting you the whole way.
And always providing information and new information. When you first hook up with him and he makes it, you know, the pre exam, then he will zoom with you and it's about an hour and a half to do more.
(23:26):
He just lays out all the science on what's going on with your child specifically and how he can help them.
That's amazing. Go Dr. Rivera. I love his energy.
Totally. It's amazing.
Yeah. So maybe just for like the other parents out there, kind of how did you prep the boys for expansion or tongue tire releases or any other little tidbits you can share with us.
(23:59):
Sure. So because we had such a great Dennis before this who maybe wasn't up on the science, but he was a really good Dennis.
They had really good experience going to the Dennis. So they weren't afraid sort of of entering into this world. I felt like they felt pretty comfortable.
And just really shared with them, educated them on why we're doing it and how this can benefit them. And I think, you know, my boys being tired. I think it really affected them. And I think they didn't want to feel like that anymore.
(24:37):
With the tongue release, it really helped to have a good mild functional therapist. Just guiding them through and reassuring them that that as much as it was a big deal, it wasn't a big deal at the same time.
And, you know, having this group of providers that really care about your kids and want the best outcome that has been just priceless. I can't express how much that has helped my kids go through this, despite the fact that it can be, you know, a little bit difficult at times.
(25:12):
They always heard and.
You know, and I got to say, I want to give you and your husband, by the way, huge kudos because you did something just instinctively.
Dr. Boyd tells parents all the time.
Yes.
Sit down, talk to your child, let them know what's coming and why.
(25:35):
Yeah.
And children instinctively want to please us. So that already gets them on board. But then when you can talk to them about it, it's not as scary.
And then to boot, you've got an amazing provider and my functional therapist. So that helps as well. But, you know, as a parent, it's not always easy.
But I think in this case, that is definitely the way to go.
(25:58):
Yeah, collaborative, right? They feel like they're part of the process.
Absolutely. Yeah, absolutely. And yes, definitely, like they're doing something. And Dr. Vera always remembers to give them kudos for, you know, like sticking in there and really putting up with it.
And doing their exercises. He remembers to really praise them because it, you know, as much.
(26:22):
Yeah, it's important as much as I'm having them do this. They're the ones that are really, you know, having, having this personal experience. Yeah.
Yeah, yeah, you guys have an amazing team. But yeah, parents, you guys are part of that team.
Yeah.
Yeah, so kind of looking back on their like infancy and toddler hood, were there any clues that might have ticked you off then? Had you known at the time?
(26:54):
Yeah, oh my gosh. So Odin was my first and he, we had such incredible difficulty breastfeeding.
He, I went to the doctor said I think he has a tongue tie, they sort of brushed me off. I had a lactation specialist come. I said, he has a tongue tie, she brushed me off.
(27:16):
It was really frustrating because it felt near impossible. And, you know, we, we ended up doing these exercises with the lactation specialist where we put our fingers in his mouth and pull his jaw down.
And my husband and I look back at that and we're like, what were we doing? You know, we were just trusting someone who we saw knew more than us. But in hindsight, that was crazy. And he just he probably needed a tongue release.
(27:45):
And, you know, we weren't sort of getting the, like the right response, I believe, I think people brush off tongue ties. That's something that I think often gets overlooked.
And I think that comes back to some of the certification just to interject because we've talked about this before and a couple of podcasts and, and the guests were very clear, which I didn't know this either. Right. When I had kids, I didn't know I was working with a lactation consultant from the hospital.
(28:18):
Yes.
But many of them are not certified the same way and I see, I always say this one, I see BLC, IBCLC.
Yeah, I'll put the right link at our show notes. But that particular group does understand, you know, airway and tongue ties and jaw development, especially when it comes to the importance of breastfeeding.
(28:41):
It's a very different group. And so this is a great example of how do you work with someone that was certified.
If you would have had a very different approach and probably a very different outcome. Yeah. Again, this goes back to you don't know what you don't know as moms.
This is the person we're supposed to be working with, but this was just a person the hospital designated. They weren't necessarily trained and certified.
(29:06):
Yes, exactly. Yeah. And, you know, and being a first time mom, it's just like everything is overwhelming. Yes.
But we stuck it out and I breastfed him for a year.
And then for Cooper Cooper and Silasworth were a lot easier.
(29:28):
But all of my kids actually ended up needing like baby Zantac or stuff for like a heartburn or a sort of a colicky disposition. That was probably an indication of, you know, the wrong development in their mouth.
(29:49):
So, yeah, they somehow it gets extra air in there.
Yeah.
(30:23):
You can find out more about the Children's Airway First Foundation and our mission to fix before six on our website at Children's Airway First dot org.
The CAF website offers tons of great resources for both parents and medical professionals.
(30:45):
Visit our parents portal clinicians corner resource center and video library to see for yourself.
We also encourage parents to join the airway huddle our Facebook support group, which was created for parents of children with airway and sleep related issues.
You can access the airway huddle support group at Facebook dot com backslash groups backslash airway huddle.
(31:09):
As a reminder, this podcast and the opinions expressed here are not a medical diagnosis.
If you suspect your child might have an airway issue, contact your pediatric airway dentist or pediatrician.
And now let's jump back into today's episode.
(31:50):
So you're right to know that there was something that we could have done at that time when they were babies, just as like astonishing that there wasn't someone that sort of held our hand and brought us to that.
You feel like it's like looking to the doctors to tell you what to do.
So,
(32:11):
And this is where we always tell people this is where you take that mom guilt or dad guilt. You got to decide because you didn't know an unfairness to most of these pediatricians and dentists and lactation consultants.
They didn't know. I mean, you know, we're just now starting to see this change.
So as a parent, it's hard because you think, well, how to only known, but we didn't see you've got to start from where you are, which is really what you and your husband have done.
(32:40):
Yeah, my mom has apologized to me for not having my airway.
Yeah, mom that was not even a thing, you know, when I was younger that would have never have come to your mind.
So I'm standing right now with Dr. Rivera as an adult and I'm really happy with just like the little amount of time that I'm doing it is the results are feeling really amazing.
(33:09):
It's just my ability to breathe. Yeah.
Yeah, how's your sleep.
It's better. It's, yeah, it's a lot better. And I still wear a CPAP but my numbers are going down as in, you know, how many events I have every night.
That's awesome.
Yeah.
(33:31):
What about your husband is he thinking about it.
I'm last on the list.
So, yeah, I don't know if he could use expansion as well but he's like, I'm last.
Talk to me when else is done.
(33:52):
Yeah, so, I mean, besides your like amazing team, did you have any resources you found helpful along the way or that you're loving now.
Like, it's like, I was thinking about this social media, it can be really harmful but in some ways it can be amazing resource for, you know, it's kind of like a collective of everyone else's experiences.
(34:15):
So, I found a lot of my own functional therapists on Instagram that are really helpful on this in terms of like steps in the process of early dentistry.
You know, that there is like a team that you have to create with the dentist, the my own functional therapist, the person that releases a tongue.
(34:42):
And when I was first, you know, just like kind of delving into this world, a lot of they bring to attention a lot of the things that you should be looking out for the red flags with your kids.
So I found them really, really helpful.
I would second that, by the way, because the myos have done so much heavy lifting, in my opinion, when it comes to this topic, they put so much information just collectively on Instagram and a few on TikTok,
(35:14):
even down to showing you, oh, you know, this is what this technique or exercise should look like.
And here's tips to help your kids get through this and oh, if this hurts, here's some things you can use. I mean, it's just amazing how much knowledge they're sharing freely shows you their commitment to this, I think.
Absolutely. Yeah. Yeah, there's one girl I want to say her healthy life, healthy mouth. I'm not sure. I think it's something like that.
(35:43):
Yeah, exactly. Yeah, we've got her. We'll put her link in there.
And she makes it fun. So she like, she'll do sort of an examination of celebrities. And so, yes, yes.
Like, this is interesting, you know, and then you all, I have that or yeah, as that.
(36:07):
That's where I learned about the gap when you smile. If you see a big gap.
And I hate to say, I think it was Prince Charles she put up there. Or no, or or.
Yeah, it was will it. Maybe it was William, but it was beautiful, wide smile. And there's a gap. And I was like, really?
Yeah.
How would you know? So now I'm looking at people every time they smile.
(36:30):
Yes, yes. I know when I, when we first heard of her, he was like, Oh, you're going to leave this office and you're going to be like, you need a redist.
You need a redist. And I do. I see it.
You didn't know when someone, you know, needs to be expanded. Yes.
What other resources did you find helpful?
(36:53):
You know, I did a lot of the resources from Dr. Vera anytime he like curious about a podcast or YouTube video, he'll send it my way.
And it's, it's at the point where like, I don't need any convincing. But every time he sends me something, I'm like, see, see, or yes, that's it. Or, of course, this makes total sense.
(37:17):
So always been such an amazing resource.
Yeah, so I think it's mostly like social media and resources through Dr. Vera.
Awesome. That's what you want from a provider to be giving you all the resources not to just say, you know, this is how it, or this is normal. It's like, well, show me, you know, yeah.
(37:41):
And when you have the information, you can make that informed decision. And I think that's really, that's the turning point, right? You've got to empower parents with the information.
Because otherwise you're just, you're just following blindly.
Yes, totally. And that, you know, and that was like, even from the start, it was, I can't imagine not sort of experiencing the things I've been through. And then starting this process.
(38:09):
I think that that helped immensely. So I give props to parents who themselves aren't suffering, but they do this for their kids anyways. Because even though it makes total sense to me, to my husband, I could see how it would kind of be like, this real, does this is this legitimate.
Because there aren't so many people on board yet. I do think that that's coming. I see it in social media too. People are, oh, this makes total sense.
(38:42):
But until that happens, you do kind of feel like you're on the forefront of, you know, some like medical frontier or something, you know, it's, it's, yeah, it's interesting, but it makes, there's nothing that makes more sense to me.
Than this. And it's interesting. I, when I spoke with with Dr. Hilary Pada, who's her podcast comes out today, in fact, it's funny because it all seems to have started bubbling up somewhere around 2018.
(39:13):
Okay, 17 2018. She was the first provider, after speaking with her that made me say, you know what, so glad we had the pandemic, because she actually said had it not been for that. You know, they, she was just starting to learn, and you went into lockdown.
What else was she going to do? She dove in as did her team online courses, like with the Breathe Institute and some other places and and reading everything she could get her hands on, like breath from James Nester or anything by Felix Liao and and you know,
(39:52):
Susan Maples, but I just like everything changed during she had that time period to focus. Yeah. And I think that happened to a lot of providers.
Yes, yes. That I mean, I think that's why it's accelerating all of a sudden because it just I mean literally 2017 2018 is when it just kind of started bubbling up.
Yes. And I think that's what catapulted it.
(40:13):
Yeah, you know, because I completely agree because I had looked before those Buckel corridors. Is that what they call them?
Yeah, the Buckel, like Googling that like, I don't like these. Well, how do I get rid of them? You know, and nothing ever said anything about your palate size or shape.
(40:35):
It was all cosmetic. But I always felt like that wasn't normal, you know, and, and it having a bigger component than just cosmetic, having like, you know, an effect on everything the space that I have in my mouth for my tongue I've always felt like I had no space.
And so it all makes total sense and I'm so glad that people are catching on.
(40:58):
Yeah, you always hear people like, oh, my tongue is too big for my mouth. And it's like, oh, I'm sorry.
All the way around.
Yeah, the other the other interesting thing that's come out of this, I don't know how many people because I was one of them and you know, you know, my background, I didn't know, even with my background.
What do you mean your tongue supposed to be on the roof of your mouth?
(41:20):
What? No, my way down here. What are you talking about? Well, now it's up here.
Yes.
But that's suddenly something that parents are talking about. None of us knew.
Yeah.
And having to break 40 years of a bad habit has been difficult. But it's always on the forefront of my mind. I know how important it is. Yeah.
(41:41):
And wait till you get to the day that you don't think about it anymore and you're.
Hypothetically just sitting there watching TV and you're going.
My tongue's in the.
You know, you just it dawns on you because you're just so used to checking it and oh, look, it's already there.
Yeah. Yeah. I can't wait.
So have you had a chance to maybe to like talk to any other parents at school? Have they maybe asked about any of the extension or anything?
(42:11):
So I have had on. Well, okay. So I'll say immediately when I left Dr. Vera's office for our first visit called up my sister said, you're bringing your kids here.
So she brought her three kids to Dr. Vera pretty much right after mine.
All of her kids have gotten expanded pretty much in the same timeline as my kids, which is just awesome.
(42:36):
Awesome. Yeah. Also sort of experiences the state she's a neuro palette and the same issues that I've had.
So it just made total sense for us. I didn't have to sell her on it at all. She was like, yep, that's what we're doing.
Um, you know, I'm not one to like push something. I do feel like the proof is in the pudding. Like I let kid I tell people about what we're doing.
(43:01):
I let them see how much my kids are, you know, just they're successful. They're doing great. They're thriving. And I kind of feel like that speaks for itself.
Um, I think that I told a couple of parents who had difficulty sort of like getting on board and didn't understand.
(43:24):
Um, but I just I just keep, you know, like telling people how we got to where we got. And I think that that sort of proves in itself, you know, how much this works and how legitimate it is.
Yeah.
And I'm with you. I can't wait for the message to get out and it's kind of hard when you're standing at the grocery store and you're in line and you look over and like a lot of kids needs it.
(43:50):
And you can't say anything. But you as a mom, you just want to go hug them and take the mom's phone and look up the website and go, here you go.
Yes.
But I'm really looking forward to the day that we had, we had our first PTA reach out to us.
And shockingly, it was a high school. I was thinking, well, it'd be better if it's elementary, but let's start right because we can still save them, right?
(44:16):
Yeah.
And we made some flyers and send it over and I cannot wait for the day that every PTA in America, especially the elementary schools, emails us and said, could we have some flyers?
Because I think that from the parent front, it's going to take something like that to really turn the ship and have more of these airway mama bears.
(44:38):
Yeah.
Charge out.
Definitely. Yeah.
Yeah. And you know, it's like, I do see in regular dentistry, they are using the expanders, but they're missing the next step. And so I feel like maybe it's just the slow roll where they sort of start to understand that you need all these components to work together in order for it to be successful.
(45:03):
Yes. Yeah. I think a slow roll.
Because yeah, yeah, well trained up by you.
Yeah, exactly.
So along the way, did you run into, I mean, I'm sure you did, but did you run into any of this, you know, let's grow out of it, or let's just wait and see anyone and how did you approach or handle those kind of responses.
(45:30):
So, like with my general practitioner that I take my boys to she was the one that made the comment when I told her about what we're doing and why we're doing it. She sort of rolled her eyes and said, Oh, you're paying for someone's college haha.
You know, and I just, I felt like I don't really need to convince anyone just watch us. You know, like, that's fine say what you will I'm not going to convince you otherwise, because you know you're a doctor and you maybe weren't trained and don't believe in this.
(46:03):
But, you know, like I said, these kids are doing so well. And I attribute that shift in in their lives to around the time of expansion and unreleased the mile that it's it's just proof that it works.
So, yeah, I mean, I, I feel like there's only so much convincing you can do. And besides that it's like, we were just we're doing so well because of it.
(46:32):
So, you know, there's the proof.
Yeah, I love I love that. So typically at the end of every episode, we always hand it back to our guests to leave the final word for our parents. So I'll turn that over to you.
Um, I didn't think about that. Um, you know, I think it's hard to financially and I'm wise and just everything that your kids go through with this sort of expansion my oh and tongue release.
(47:11):
But I feel like as far as, you know, things that I've passed on or given to my kids, this is one of the best gifts I've ever given them.
To have a future where they don't need to worry about CPAP where they be irregular where all of the systems in their body work properly. And just to be able to give my kids that just feels like the biggest blessing ever.
(47:41):
Um, and, you know, if you can find a group of providers who can walk you through this, I promise it's worth every penny. And all the time.
It's just something that I think is as parents you just want your kids to be and this is like the biggest step towards that.
(48:06):
So yay, are we dentistry? Yay, are we dentistry? Yeah. And so and I would also encourage parents if you haven't already check out our website.
We have a recommended reading list, which is phenomenal. I don't think you can go on with any of the books, but we typically guide parents towards, you know, a couple out of the gate like Susan Maples, brave parents that really is wonderful.
(48:32):
Dr. Sharon Limbs, Breathe Sleep Thrive Phenomenal and Sharon Moore's Sleep Right Kits.
Start there and then if you want to elevate, dig into some of the others that are really detailed like, you know, anything from Dr. Liao or Dr. Gelb's books.
(48:53):
I mean, just have at it. But if you start just with these, you know, three or four, you really get a good sense for it.
Or if you're looking for a group, you can join the Airway Huddle, which is our parent support group.
So you can talk to other parents like Jenny who've walked this walk already and can share, I don't know, advice tips, even recommend other professionals, dentists, myopunctional therapists that you could check out.
(49:20):
And also if you're stuck or if you have questions, we encourage you to reach out to Christie because she is our parent liaison.
And she can help you with so much so you can reach her at Christie at Children's Airway First.org or at info at Children's Airway First.org.
(49:42):
Yes, love to hear from you guys.
Yeah, so thank you so much, Jenny, for coming on and sharing your journey. It was wonderful to meet you and to hear your stories and we're thrilled to hear how well you and the boys are doing.
Thank you. Thank you so much, ladies. It was so fun to talk about this.
Yeah, thank you.
(50:29):
Children's Airway First.org.
Today's episode was written and directed by Rebecca St. James, video editing and promotion by Ryan Draughan and guest outreach by Christie Bojinkan.
And finally, thanks to all the parents and medical professionals out there that are working hard to help make the lives of kids around the globe just a little bit better.
(50:52):
Take care, stay safe and happy breathing, everyone.
(51:22):
Thank you.
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