121- Every Breath A Gift

Today’s episode is with Daniel and Roxy, the parents to 3-year-old Sebastian, our featured kiddo for the month who has a number of diagnosis, one of which is Vacterl Association. Daniel and Roxy do an excellent job of painting a picture for us surrounding the journey of how they got this diagnosis and what that means for Sebastians development and day to day life.

Sebastian has 2 siblings, Lila who is 6 and Alaric who is also 3. That is right, Alaric and Sebastian are twins and today we will get to hear something that we don’t really come across often which is a set of twins and only one of them carries the diagnosis. If you haven’t had a chance yet, go to our website or Facebook page and watch the video to see these siblings together. They are exactly what you would think 3 year old twin boys would be and more…especially with an adoring big sister.

This episode is full of stories, insights and love…a lot of love.

Episode Transcript

(00:00):
People think that he's drinking ali verajust because of the consistency, and I'm
like, no, it's yeah.So we used to buy a powder which
was terrible. Yeah, like wejust didn't know because we were nubs,
and so we started with a powderto thicken it um because he used to
have to drink honey thick liquids.So like, you know, imagine your

(00:21):
water like slowly, like pouring.Diagnosis does mean a lot, yeah,
but it doesn't mean there's any lackof joy. Now an adventure as a
family. I'm Seth Carnell and thisis the ghoshot Love Podcast. Today's episode

(00:45):
is with Daniel and Roxy, theparents to three year old Sebastian, our
feature kiddo for the month, whohas a number of diagnoses, one of
which is vactoral association. I don'tknow what that means. Well, you
are not alone. I didn't either, but Daniel Roxy do an excellent job
of painting a picture for us surroundingthe journey of how they got that diagnosis,

(01:06):
what it means for Sebastian's development andday to day life. Sebastian has
two siblings, Leela, who issix and Alaric, who is also three.
That is right, Alaric and Sebastianare twins, and today we will
get to hear something that we don'treally come across often, which is a
set of twins only one of themcarries the diagnosis. If you haven't had

(01:30):
a chance yet, go to ourwebsite or Facebook page and watch the video
to see these siblings together. Theyare exactly what you would think three year
old twin boys would be like,and more especially with an adoring big sister.
This episode is full of stories,insights, and love, a lot
of love, so we won't delaythis anymore. Talking to Daniel and Roxy

(01:53):
today is Josh Beach, our executivedirector of gosh Out Love, and Jessica
Santa, our family relations director andtalented photographer. Please take a second to
rate, review, and share thispodcast on social media. Every kid we
feature has a story and that storydeserves to be shared, so please help

(02:14):
us share it. Well, let'sbacktrack and let's start from the beginning a
little bit, because I want toknow all about your journey with Sebastian.
So should we just start from thebeginning a little Well, first, let
me introduce you guys. We're herein Houston, Texas with Sebastian's parents,

(02:36):
Roxy and Daniel, and they're threeawesome kids. You want to introduce him
them the kids. Okay, SoLeila's our firstborn. She's currently in kindergarten.
She's six. She is, she'shilarious, she's just she's a carbon
copy of her dad and Alaric.We call him the middle child because he

(02:57):
was born a minute before Sebastian.Any definitely has like middle child qualities.
Um, and he's he's dramatic,and he's funny and I love shopping.
We have this he loved. Hehas these sunglasses he likes to wear and
yeah, it's just like Clig roundElton John him. We call them his

(03:20):
Elton glasses. Yeah. And then, um, Sebastian is just like,
you know, a beast. He'sum, he's small, but he's mighty.
Um. He he's the happiest kid, Like he would never think everything
that he's been through. And that'show you also know that it's like we're
about to get out of the hospital, is because he's got a smile plastered
on his face, like just likeas soon as he wakes up, you're

(03:43):
like, oh, or we're leavingsoon. Good day. What is your
hospital count up too? Now fortwenty twenty three, Oh, for twenty
twenty three, we have gone solucky. Yeah, one because nine yeah
discharges on December twenty third, andthen we had a long stroke out of
the hospital twenty third of every monthwe were like, I know, I

(04:04):
was like, hey, it's hlike, don't say it. Because we
did have some scares, like inFebruary we thought we were heading to the
hospital and somehow like with his withthe treatments that we have that we can
do for him at home, um, like ever since having oxygen at home
was a big game changer. Andthen um, we had another scare right

(04:29):
after the April stay, like wethought we were headed back. Yeah,
it was pretty bad there. Ithink we had something in March two where
it was just kind of like alittle yeah, So explain Sebastian's diagnosis for
us the best that you can.There's a lot of words with his diagnosis.
Every time we take him to theer. It's like can you can

(04:50):
you can you list them all prettywell? Now? Yeah, It always
impresses me how parents the medical kiddoscan just yeah, their language is just
as much anymore because they're keeping.No, I mean because they're keeping and
there's a lot more of a kindof connected team that's helped us out lately.

(05:13):
Yeah. So he was born withvactoral association. Um, we did
not know that at all until hewas born. Um. There was one
doctor that did the yeah, thethe anatomy ultrasound and he was like,
there's this is something weird here,but like we can't really tell what it

(05:33):
is because he's in a weird position. You might want to go get this
test. I don't remember. Idon't remember what the test is called.
But because I was pregnant with twins, they were like, oh, we
don't cover it because it would beconsidered a trial because you're twins. And
they told me based from what Iresearched and what I saw, and I

(05:54):
joined a bunch of Facebook groups liketwins and then vactor rol and from what
I saw, it was basically todetermine if your children had Down syndrome.
And so I was like, well, like I don't care, you know,
like it's not I don't need totake a test, Like what's whatever
is gonna happen is gonna happen.And so it was a scheduled c section,

(06:16):
and I made it to the duedate, which everybody was amazed by
that because I'm under five feet andit was twins. They were both over
five pounds, which was my goal, like because then I knew they wouldn't
go to the nickem. Of course, when Alart came out, you know
you heard all the crying, Sebastiancame out, not a lot of crying.
So they were like, we're justgonna take him back. We're a

(06:36):
little concerned he's not crying. Andthen I probably like lost conscious. I
had lost so much blood. TheyI had a transfusion afterwards, but yeah,
so they all I remember is likethey said they wanted to check on
him because he wasn't crying very much. He wasn't very loud. And and

(06:56):
then I just like remember the pictureof me in the hospital bed and like
they were like, do you wantto say bye? Because they had him
in that like travel incubator. Yeah, and I was just out of it,
Like my blood pressure was like superlow. That was before I got
the transfusion, and I was justin and out of consciousness. That's a
lot for you to take in.Yeah, so he was basically I was

(07:16):
in another world just mentally. Itwas just like crazy, and where do
you go as a dad? Likeyou kind of have your two worlds are
separating right now? Yeah, becausehe did have to get transferred over and
then it was like I was backin the back with them and they said
like basically like Dad, you wantto come back over here, and they
started explaining some things that were justkind of iffy with him, and I

(07:43):
had to keep watching him and thentrying to explain that to her as well.
It was kind of running back andforth and then saying, now we
got to go, and here heis like wheeling past. Yeah, and
we have so many pictures of Alaricin the hospital room with us, and
then like we at least we gotthe one photo of the twins, and

(08:03):
you had forgotten your phone. Soone of the nurses was nice enough it
was take a photo of Yeah.This was already stressful to begin with.
You know why, It's because youdidn't join the smartphone era when you should
have. Oh yeah, I shouldhave been a trail boys. It was
it was embarrassing, but it wasalso right. She sent it. She

(08:24):
took a picture with me and thetwo boys. Next to my head and
then sent it to you. Andit was awkward because they aren't really supposed
to do that, and it wasthat my phone I think was in the
room or something. But then bythe time they shuttle us in there,
I'm not thinking about anything. Yeah, significant moments happening all around you.

(08:46):
Yeah. Yeah, who's supposed toknow exactly where your phone is? That
kind that's kind of an unfair expectation. Yeah, it was different too,
when you weren't counting on your oneof your babies leaving you. Yeah,
and with Leela, like her pregnancy, like they were gonna let me try,
but you could tell the doctor wasbasically like, you know, inducing

(09:09):
someone usually leads to a C sectionanyway, so we kind of knew that
was going to happen, like relaxing, but for some reason that wasn't quite
as stressful as already know, likescheduling that C section. Yeah, like
I just I was uncomfortable. Iwas more aware. And then we were
trying to do the natural birth withLeela where we were sitting there, I'm

(09:31):
like reading a book and studying andrelaxing and stuff, and then like like,
oh, it's kind of dilating,like maybe it natural it was induced,
right, well, you know still, but yeah, I was just
way different. And then you know, yeah, he ended up getting taken
away, and I think I wasin the hospital, like because of my

(09:52):
blood loss and everything. I thinkI was in the hospital for like two
more days before I got to seehim. Yeah, because he was born
in the thirteenth and I didn't seehim to the sixteenth. I think it
was during It was like twenty twentyone or something. March of twenty twenty
one, I went through and Istarted still really really going on. Yeah,
well, I started research or researching. I started looking back and like

(10:13):
trying to figure out how much ofSebastian's life was in the hospital or like
broken up by these like hospital visits. And I made like just totally nerd
it out and made like a bigspreadsheet, like calculated how much percent of
his life was in the hospital.It was like twenty or twenty five,

(10:33):
wasn't it. No, I don'tIt wasn't that bad. I think it
was it was his percent, no, because it was like it was like
fourteen or fifteen. I think it'sstill pretty good, right, because when
you think about it, it's like, you know, you're in the hospital
like two days out of ten orclose to it or something, you know,

(10:54):
like that's not cool. And thatwas because we kind of had a
lot of backlash after being so removedfrom a lot of people trying to be
like as safe as possible with everyupper respiratory thing that was coming around,
because that's his main concern, right, So let's explain that really quick.
So sorry, Yeah, and Ididn't even go into that's diagnoses and everything.

(11:16):
He's so used to being like confidantlyattached to machinery that we have,
and it was like put his waterand I tried to put it in the
bed with him, and he wasjust not having it. He's saying it
all done. I'm making him justlike tell us about the diagnosis when you

(11:37):
got that. And then, forsomeone who's never heard that term, what
does that mean in layman's terms?Okay? Um, so whenever. So
when he was born, they tookhim to the other hospital and I guess
that's where they kind of examined himmore thoroughly, and they called us because
I think Daniel was still at thehospital with me at the time, and
I remember, um, he hadhis phone on like speaker and UM.

(12:03):
I had my notes app open andmy sister had her notes app open,
and so they were telling us aboutvactoral association, and they were saying,
like, you have to have atleast three items from this UM seven letter
acronym to be considered UM to havevactoral association. And so he had three.
One of them's gone. One ofthem is not as concerning right now,

(12:24):
it's not going to it's not asdangerous as his respiratory issue, which
is the stairs. Yes, yeah, I can tell you. I can
talk about it off the record.I just don't want him to be attached
to that, you know, becauseso he has UM. His I think
it was VSD the hole in hisheart, that one closed up, but

(12:48):
then it was the it's theme perfectanus UM that I did talk about it,
you know, like his first yearor two, and then now that
he's getting closer to being in school, I'm like kind of just removing stuff
from the internet. But yeah,so he has an imperfect anus. And
so his first two surgeries he hadUM for his trachio. I'm sorry he
had it for his trachio Malaysia,I mean sorry his there's so many different

(13:16):
names for it um because they saidesophageal atresia. That's what that was the
first term that I heard, andthat's what they kept saying, yes and
um. So he had a surgeryfor that, and then he had they
put in um an awstomy bag,acclossomy bag and um. So that in

(13:37):
twenty twenty, they made him anartificial butthole and kind of like they put
electrodes on his butt just to seelike where his muscles were tensing, and
so picked that up in an ultrasumwhat they I mean, I guess you
don't know something you look for you, Yeah, like I don't. I
don't, But they didn't. Yeah, I mean because they already thought that

(14:01):
with my eight I think I hadthem when I was thirty six, and
twins, like it was already likeyou know, they were checking for everything,
but I don't know. Um.So then he had to let down.
So that we're just we just kindof have to figure out a schedule
with like his fiber and his laxative, and since we're only going to start
potty training them this summer, thenwe'll see like how much control he has,

(14:22):
because only fifteen percent of kids withhis issue have control over their bowels.
So we're like, can we please, can we please? Yeah?
Yeah, he can he can feelwhen it's coming, so so yeah,
they not to get too in depthwith it, but they had to retrack
everything, is that right, liketo to exit. We were lucky,

(14:46):
honestly, because there's like if itdoesn't fully develop it, if it doesn't
open, then if there's a possibilitythat the like the rectum and stuff is
like or the lower inte this islike super far away. But his was
really pretty close. So whenever theywere able to make him a new one,

(15:07):
they were able to connect it easily. Wow. Yeah, and then
we had to dilate for a year. I know. Yeah, I was
just like to actually, yeah,because they were they I guess they kind
of compared it to like getting youryour peers, like it wants to close.
Yeah, so that's not something youthought you would be doing as a
new mom, right, Yeah,sure that was. And at the time,

(15:28):
that was the most intense thing wewere doing with him. Um,
it wasn't until stuff. Yeah,it was like a science project. I
had a tackle box and they werelike a toolbox that had all these things
because you have to keep it quiteYeah, so they showed us how to
do that. But then this amazingnick You nurse was like, you could
just do a sideways diaper, andso we did. Like we were like,

(15:52):
this is the same change. Yeah, So we tried the bag for
one month and then we were like, no, like, this is miserable,
keeps coming undone, he keeps smellinglike poop. Yeah, so we
did the sideways diaper and just changedhis diaper that way. Yeah, we
would do like two diapers, likethe normal one in the sideways one or
just like yeah, those Nicki nursesyeah, oh yeah, um, but

(16:18):
I'm sorry, So I'll talk abouthis um. What they said they called
it esophagela tresia. But then likeall the groups that I joined on Facebook
are like t e F like theesophageal fistula, trichy esophageal fistula, so
basically it's trachia. You probably remembermore of this because I was like,
so it's just like what I've read, um, but his trachia and his

(16:42):
esophagus were connected and they were notsupposed to be connected. Um. So
that was I think that was hisfirst surgery, wasn't it. That had
to be because we couldn't eat ordrink. Yeah, nothink would go into
his stomach. So then for twoweeks he was um two fed and he
had to be tranquilized enough, likewhen he sedated, enough to where he

(17:07):
wouldn't move. So he has abig old scar on the back of his
head and he used to be little. But you still grow. Yeah,
as you grow, it grows withyou from just a bed sore. Because
he could not move for two weeks. And I think it was the third
week that I got to hold himand then you got to hold him.
How was that moment? Well,I didn't even know I was going to

(17:29):
get to hold him when we wentin, Like it was the third week
that he was in the nick,and there was a different nurse and she
was like, do you want tohold him? And I was like,
I can hold him now, andthey were like, oh, yeah,
you've never held him. So thenit was just yeah, I know.
So I just thought he's you know, I thought he was still so delicate,
and I was still pretty scared becausethe sirt like they're kept being a

(17:52):
bubble. And so it was likeevery time we would go in, I
would stand behind him whenever a doctorwould approach because I just I was afraid
of what they were going to tellus, Like it was just so new
and it wasn't it seemed like theywere still trying to figure stuff out through
yeah, and it was it wasnew information for us. And then every
time there were medical students, theyall wanted to go see Sebastian. So,

(18:17):
um, it was fine for themost part, but they wanted to
see Sebastian because he was so rare. Yes, okay, because it was
rare. Because he was rare.It was like a perfect case study kind
of Yea, from a students standpoint, there's a lot to learn, but
that's still your child, and it'slike, yeah, you don't want to
there's this fine line of like yeah, education, but not a lab rat,

(18:38):
like don't look at my child.Yeah, that would be difficult,
I think. So they would typicallysee us and come back later. But
I remember like it would just belike three or four of these students like
with the doctor, like like reallywanting to see him. And this was
pre COVID and you know, everyso everything was it wasn't quite as you

(18:59):
know, they probably weren't allowed todo browns like that. Like during COVID.
But but the closest doctor we gotto was actually the surgeon, the
surgery team. Somehow it was likethe ones that were it seemed like they
were our biggest UM supporters for along time, which was interesting. Yeah,
so that's interesting. But I alsofeel like we had to do all

(19:22):
of our research, like nobody wastelling us we didn't. They weren't resources
right, they were giving us thenames. They were giving us like surgical
options. But anytime I would askabout like, um, you know,
something regarding his future with whichever ofthe three conditions um they just were,
they would be like, well,you know, it's like cursory information,

(19:45):
just like quick and kind of likethis could happen. Yeah. So when
I joined different Facebook groups, that'swhenever I was like, okay, I
mean like making this list of questionsand um, like we didn't see we
didn't get all legist like getting typeof specialist for way too long. Yeah.
Yeah, and then it just keptgetting more and more layers on it.

(20:08):
You know. We were just like, well, we could have immunology
issues and yeah, and he hadan e NT, but it wasn't until
he choked. That was for thewearing gel cleft, right, And that
wasn't until we had like a severelike aspiration of that, right. So
you guys were just new parents andyou weren't getting a blueprint path on what

(20:30):
to do with this rare kiddo.Yeah. So when he was so,
he had his first infection. Itwas rhinovirus, which is just a cold.
When he was five months old,he ended up in the pick you
in the pediatric icue for three weeks. He was intubated and extabated three times,

(20:52):
and they could not figure out whyhe couldn't stay excavated. They didn't
know why, and and he wasnursing and everything normally, like we didn't
he had just started eating. No, he was five months old. We
were about to start giving him solidsprobably in like a month or so.
But yeah, he was doing fineat the milk. He didn't seem like

(21:14):
he was choking or anything or aspirating. Yeah. Yeah, So like nobody
could figure out and they kept puttinghim on albuterol. And with his trachio
malaysia, so his trachea is veryfloppy, that's the trachio malaysia. When
he inhales, no, sorry,inhaling is okay, exhaling is more work
high and so like, if he'sunder the weather at all, you can

(21:37):
hear him breathing. M Is thatusually your first sign? Yeah, that's
okay. Yeah, so you saidhe has a lot of hospital stays.
Hi, I see you and canwhat's the first signs typically of okay,
I think we're probably heading in thatdirection. His breathing. His breathing,

(22:00):
yes, more so now with theoxygen support that we have at home.
It's whenever he's on oxygen and hthe first first time is like if it's
all he's doing is breathing hard fromhis belly, and then once it starts
kind of going up under the ribcage, and it's like, okay,

(22:21):
yes, if he wakes up atnight coughing, that's whenever. I'm like,
so, is this an issue forhis lungs or for what's the main
concern when he starts coughing and havingthese breathing issues. Well, I don't
know how how you explain the Soit's airway clearance. It's airway clearance.
What happens is that he builds upmucus and he could he could choke.

(22:45):
Well, it's not that it's thebecause there's like a weakness in his esophagus
and stuff. It's like, yeah, it's like mucus can go down,
but when you cough normally, likeyou know, our stuff open up and
it lets stuff out, but hisis weaker and stuff, so it's just
like it's kind of hitting up againstsomething that doesn't let the mucus out.

(23:07):
Yeah, when he's coughing, it'sclosing. Yeah, so it's like he
gets clogged up. His airwa getsclogged up, and the saturation goes down
and breathing rate and his heart rategoes up because he's fighting it. Then
when he gets a fever too,paired with that, that's whenever it's like
because his body's working so hard,it seems like the fever starts and it

(23:30):
doesn't seem like he should really havea fever, like because the infection or
something, but it's because he's likehe's just pumping stuff like usually he has
a fever. We can keep himout of the hospital because if you deal
with the fever, then his breathingand his heart rate. It's all from
like trial and error and i's triggeringstuff out. Oh yeah, there's been

(23:52):
a lot of trial and error.So right now he mostly has oxygen support
at night or does it just kindof hit or miss, And that's only
if he's okay, yeah, wedon't do it regular. Yeah, like
right now he's going to school.Like this is not this is not his
baseline. But it's also not likehis being sick. It's like the residual

(24:15):
stuff that um, you know,like just an extended recovery from being Yeah.
Yeah, because kids with trachio Malaysiaor they even said trenchio bronchio Malaysia.
Um, they have a cough likethey just and so that so when
he's like this, like we wantto go out and take in places.

(24:36):
But then ever since the pandemic,like your kid coughs in public and you
know, you get in the sideeye. We went we were at that
marketplace. Yeah, we were atthe Marchha. We were at this like
marketplace, um by my parents andand we were in the lobby waiting to
leave and he coughed and some we'llwalk buying with like yikes. So I

(24:57):
was like, you don't know what, you don't know what. Yeah,
but it's true. But we getit also because you know, we're both
in education. There are kids thatcome to school when they should probably not
be at school, and they're likeyeah, yeah, but for him,
you know, it's been two weeks, three weeks, so we're like,

(25:18):
there's no way he's contagious anymore.It's just that trachy emotion. Umber.
Yeah, number, where's the pullsocks? Most? Like ninety five percent
of the time at night. Iwould like you to describe the bomb between
your twin boys, and then alsoon that what challenges arise raising twins who
are so medically different. Yes,Um, so they get along probably eighty

(25:42):
percent of the time, which isI think a lot for siblings. Yea,
Um for a while. I guessit comes in waves at the moment
they're on the eighty percent. Um. But yeah, so the lark is
very affectionate. Um so he likethe other day, I think he came

(26:03):
home from school and Sebastian wasn't atschool yet because he's, you know,
still getting over being sick and neededextra treatments throughout the day, and so
seba Alari came home and was like, brother, hi, I missed you,
I love you, and like Sebastian, either he'll either be like into
that or he'll you can I thinkhe kind of gets jealous, and that

(26:26):
was a big issue in the fallwhen he had back to back hospital stays
like every two or three weeks,because he was missing out on so much
and you could see that he wasangry, and he was actually being pretty
aggressive towards Alaric and sometimes even Leila. And one of the doctors asked us

(26:48):
if one of his medications made himthat way, and we were like,
okay. First of all, wedidn't know that was a side effect,
and secondly, we just thought thatwas his age and just him dealing with
the emotions of being like tied toa hospital bed for so long, while
his siblings are you know, theirface timing and they're like, you know,
running back a story about this.I can tell you a million but

(27:11):
the main thing I think for awhile, whenever he was first kind of
I guess acting aggressively towards a lordis all he would have to do is
raise up a toy above his headlike this, and he would just scalp
and alark would just start screaming forus and crying and running away because he
would throw something at him. I'msupposed to be the older brother here,

(27:34):
I'm a minute older and yet youngerbrother. Here portionally, he's like way
bigger Alark is. You know,you think at this at this size,
it would be like me and atwo hundred and forty pound guy or something.
You know, but he terrifies himthe less flipped kind of But you

(27:56):
know, all he would have todo is like hold up. Yeah,
he would he raised up a toyand a lark would go running. Or
he'd be like, he's trying totake my toy and we'd be like,
a lark, you're faster than him, run deal with your own stuff.
Sounds like a really solid number rightnow. I feel like it might mean

(28:17):
because they're together more right now,whereas in the fall whenever. So he
had nine hospitalizations last year, andsix of them were just in the fall
from August to maybe it was Julyto December. It was, but it
was just like every two to threeweeks, like it was a lot.
And so they were apart a lot, and I think that that's I think

(28:37):
his anger and jealousy um kind ofmade it so that they were in a
not getting a long phase. Howdid you guys as a family navigate that
season, because obviously you're a marriedcouple. You've got an older daughter and
then you've got the twins, andso there's all these different bonds and your

(29:00):
work and like the rest of lifedoesn't pause because you've got these hospital stays.
So how do you navigate that.We took a lot of days off
at first, we switched on andoff then at the hospital. Yes,
and I didn't have my schedules moreflexible. But I don't have the days
because of maternity leave, and hehas his schedule is not as flexible because

(29:25):
he has actual students. Yeah,he's like, you actually have actually actual
classes to teach, and but youhad the days. So that's why I
would flip f up. But thenmy parents would help by take picking up
children, taking care of a larkif if needed, because he you know,
Leela could stay with you. Shewas more independent and she had school.

(29:48):
But then his mom started visiting orstarted coming down in her RV,
and so she then because you know, our parents had to get somewhat comfortable
with his machinery and his equipment andeverything. So she was comfortable enough like
once Sebastian if he was out ofthe pick you, I think is whenever
she would start staying with him,so then we could both go to work

(30:11):
and just swap off. Yeah,she stayed up. I thought it was
a big change for us whenever mymom would stay up at the hospital.
Yes, and then we could bothgo to work and then we would switch
off staying night. Yeah, wewould stay to night and then she would
come and leave one of us inthe morning. Yeah. So it was
just a lot of balls in theair, and you know, like,

(30:33):
how do you guys maintain your youroutlook, your positive outlook during that time.
I'm sure you had a kind ofa drought of positivity. I mean,
I think you would, But howdo you guys maintain your outlook on
that My opinion is you don't havetime to think about it. So there's
no point in kind of letting thenegativity getting away because you're going NonStop.

(30:56):
And then whether you're at the hospitalor you're here with the other kids or
whatever, it's like you're taking careof them. And then by the time
you get a moment to sit down, you're you know, you might say
like, oh, let me sitdown and relax for a second, watch
a TV show or something, it'slike you last like five minutes into it
and then you're just out and thenyou wake up and do it all again.

(31:19):
So it's literally just keep going,keep going education too, you know.
So it's kind of like we're alwaysjust taking care of k. Yeah.
Well, for a while, Iwould be the person to take Sebashion
to the er, like um,just because I'm so much smaller and so
like waiting in a chair, it'snot as hard on me. Sleeping on

(31:41):
the couch, it's not as hardon me. For a while, for
a while, he noticed that itwas affecting my mental health. So yes,
so I started accepting, Okay,we need to like switch this out
more often, because I found somuch community, like especially on Instagram,
whenever anything of Sebastian's, you know, hit the right audience, Like I

(32:05):
have made friends with caregivers in similarsituations. I have made friends with young
adults and teenagers in the same situationas Sebastian. So it's been that has
been a really hopeful thing to seeum. And you know, they'll they
also comment on the way I'm handlingthings, and you know, it's it's

(32:27):
it's just really amazing to see itfrom both sides. And so whenever we
were going through the like, youknow, these are the things we might
discuss with you. I was like, Daniel, like, I have this
online community and I have you,but like what, like who do you
talk to you? Is it justme? Like or do you talk to
your friends? Sorry? Do youtalk to your friends too? And so

(32:49):
I was interested in hearing his answer. It's very interesting because we talked to
a lot of dads and you takeover this because you've talked to the dads.
Well, I want to know theanswer. Did you respond to her?
I think I just blew it offand you did. You were like,
I'm gonna surprised. You kept throwingsomething else like, oh, I
don't really. Yeah, you're justso much more optimistic than I am.

(33:12):
Well you have to be. Imean, he's just he's progressing, he's
getting bigger and stronger. It's likeyou can't. I was even, I
had a kid today who was havingsome type of meltdown and yeah, a
student today that was having some typeof meltdown in my class and I was
talking to him in the hallway andI was like, he's had a lot

(33:36):
of issues through the year, andI'm like, you've done better, You've
gotten better. It's been longer timesof you like not having these issues and
he's like, yeah, that's toughand it hurts, and I'm like,
yeah, it does, but you'vegotten through it once, you can do
it again. And I'm like,my son's it's like easy to compare it
because like my son was out ofthe hospital almost for four months, which

(33:57):
since twenty twenty one was like itwas pretty close to a record, you
know, for him being out ofthe hospital other than like COVID time because
he didn't see anybody, so otherthan surgeries, Like he wasn't getting sick
because we didn't expose him to anything. But that four months was it was
a long stretch. And then whenhe was in the hospital three nights and

(34:21):
he's out, and we were wewere very anxious nervous about his I was
glad that he got out because hegot out the night that you won Teacher
of the Year for your award ceremony, but it was we still had a
lot of work to do at home, so like, it's awesome that he's
out, Like whenever he gets discharged, we're so happy to be at home,

(34:42):
but it's we've still got like oneor two weeks of like, yeah,
be difficult, can start, hecan relapse to a certain extent um
and there's always a possibility pneumonia likesticking around and U just opening him up
to another infection. And then itwas just terrified of being stuck in that

(35:07):
kind of like out for a coupleof weeks and then back in and then
out for a couple of weeks andback then because that was the fall.
Yeah, And one of his pulmonologists, because we've since switched to an aero
digestive team, but he was sayingthat once Sebastian is sick and has all
that extro mucus, it's harder forhim to swallow his liquids and even the
thickened liquids and so he could aspirateand so you know that's like on top

(35:30):
of all that the laryngio cleft.So you were talking, you were talking
about this before we started recording thepodcast, But can you tell us a
little bit about the thickened liquids andwhat that looks like for him and why
that's necessary. Yes, So Ithink that his situation became a lot more

(35:52):
I don't want to say life threatening, but it did become it did it
became more life ending the night hewas He was one in a couple of
months. So he's fourteen months oldand we had just he had been they've
been eating solid foods for a while. He'd been drinking regular fluids. Um.
And I remember, like I camehome and I think I actually made

(36:19):
dinner that night, and I hadfound I found this recipe online, Like
you remember exactly what it was,Yeah, pesto pasta, and I guess
it was. He has the biggestappetite and like people are always surprised to
see that because he's got the gtubeand they're like, oh, he eats
my mouth eat. Yeah, Andso back then, I mean he would

(36:42):
like stuff his face. Like wehad to sit with one of us had
to sit with him when when theywere eating, and um, he ate
too quickly. I didn't cut upthe food small enough. You know,
you can go back and see ita million different ways. But he was
choking and like Norton, like ithad happened before, and it's called a
stucky so like had it happened witheggs and so like he'll start breathing like
this, like and like he'll tilthis chin up and like you see him

(37:06):
retracting. And so the way thatI had been dealing with it was like
we would pat him, he wouldcough it up. But so this time
I was patting him. I'm sorry, and it's a hard story. I
was patting him and he started stiffeningup, and I was like, you
know, and I flipped him overand started patting and patting him, and

(37:28):
he just like I was trying toget it out with my finger, and
I could feel him stiffening up,and I could feel his josh shutting on
my finger, and I started screamingfor you. And so then you took
him. And his mom was visitingat the time, and she was in
the RV and she her his familyruns a volunteer fire department and so they're
all like trained with you know,they've got like CPR training everything. So

(37:52):
we ran out there and we werebanging on her RV. She I think
she just spent the day taking careof him, and so usually that'll like
wear her out, and so shewas in the RV asleep, um,
and so we were banging on theRV, screaming, screaming, screaming.
He puts a bashing on the hoodof the car and started doing rescue breathing.
I don't know CPR rescue breathing,um. And so I called I

(38:14):
would call nine one one and outscreaming into the phone and the ladies like
you have to calm down, Ican't understand you. And I was like
I could see it in my head, like this is always what you see
on TV, and it's exactly what'shappening. Um. So he started coughing.
You got it. He started coughing, and like you could tell that
there was still something stuck. Icouldn't do the breathing until I knew that

(38:37):
there was some type of you didyou reached in there? Yeah? His
jaw was closed tight, and Ifinally just said I just had to jam
my finger down in there and clearsomething out. Yeah. And then did
you did you feel did you feltit? Yeah? I felt it.

(38:59):
I felt it finally, like getout. But his jaw was like yeah,
wired shut. It was so tight. It just yeah. And so
because I'm just all into just torturingmyself, we have a ring camera in
the front and I wanted to knowhow long he was without oxygen, So

(39:20):
fear of like brain damage, yes, like that was yeah, so we
the ambulance came and got us.He was breathing, but his saturation was
still really low. While we werein the ambulance on the way of the
hospital, he coughed up some morefood and I was like, oh my
gosh, great, like you know, he got over, he's getting everything
out, like this is gonna befine. So when we get there,

(39:42):
they like do an X ray andhe's got food in his lungs, like
they yeah. So they had totake him into the R and they told
me that it wasn't going to takelong, and I think it took like
four hours. It was. Itwas terrifying, and but that's how we
learned about his yes aspiration yes.So um So while he was in o

(40:06):
R, like, the anti cameout after like four hours, and he
looked distraught and I was just likeand he was like, um, we
got everything out. He had thesetiny green things and he was freaking pesto.
He had the pesto and chunks ofpasta like in his lungs and I
was like, there's no way thathe like swallowed you know that. I

(40:29):
was like that had to have beenfrom us, like, because we were
hitting his back so you know,like trying to get him to stop choking.
I was like, that had tobe that we like somehow, because
there's no there's just no way thathe breathed didn't eat that. Yeah,
yeah, because he was at firsthe was just acting like he had a
stucky and um. So anyway,the anti came out because he was like

(40:51):
he almost choked again on the tableand like so like that night, Sebastian
basically almost died twice, and sowe were in the hospital for three weeks
because they were trying to figure outthey said he had dysphasia, that he
had that he could not swallow properly. So we were in the hospital for

(41:12):
three weeks while they kind of figuredout, like we thought that that was
it. We thought because of hislike trachill Malaysia and the official and stuff,
that it was just like a weekendweekend esophagus and stuff. So he
was having trouble swallowing, and itwas basically like cut his food in smaller
bites and make sure he doesn't eattoo fast. No, they we purate

(41:32):
everything for months, right, Yeah, But I mean that's kind of like
what we were thinking of. He'sjust like having trouble swallowing and stuff in
the aspirations, like I don't know, everything was yeah, and then it's
just such a mystery to me.But he for he had eaten solids and
been drinking fluids for months and hehadn't gone sick until But then there's the

(41:58):
idea of something called aspirations where it'slike yeah, or you just get like
tiny bits of stuff a little bitout of time, you don't think about
it. And they brought that up. But the fact that he wasn't getting
sick frequently because at that point hehad he had been hospitalized with rhinovirus at
five months old. He had allof the surgeries and whatever that he had

(42:20):
had, but he hadn't been inthe pique until after that all happened,
which is like and I don't knowhow many times I've googled like like things
that cause a laryngio cleft, likeyou know, like not being born with
it, like could it happen justlike come about later? Like yeah,
we thought initially like, well hecould. It couldn't have been this because

(42:43):
of that the yeah, which ishis little body is a mystery. And
so after that we had like youknow, we had the vactyl association,
the three um diagnoses. They wenton top of that, laryngio, cleft,
tracheo, Malaysia and oh, andthen he kept getting sick after that.

(43:07):
He got sick. That was inJanuary. He got sick in March,
he got sick in June, andthen it was like October December,
and so they said that he hasThey were like, he has asthma.
Like they didn't do an official tests, so they called it reactive airway disease.

(43:28):
So just like his little lungs justthey did not they barely have enough
time to heal and and that's whatgot him. In the fall. Leela
started kindergarten. She brought all thegerms home and she's wonderful, Like you
know, she's six, and shewore her that mask to school and you

(43:51):
know, you take it off,you forget. But for the most part,
her teacher would send pictures home orpictures through like their little learning app,
and you would see her. Shewould see her with that ask on
the one yeah one kid, someof the kids started the year. But
yeah, and now like I putit on her, she wears it,
so I tell her, just wearif you're crowded if you're sitting next to

(44:12):
a lot of kids, you know, but you know she's six, so
she tried her best gymnastics, Yeah, because that's a pretty crowded class.
But we even know that that's notyou know, it's not like a fool
proof y thing, but it's butit kept your fingers out of her mouth
and that that definitely help. You'realive. Yes, yeah, so no,

(44:35):
UM, still no answer as toreally what happened or what caused that
choking episode. Yeah, I justhe They put him in speech therapy after
that, which was yeah, anentrance. Yes, he Daniel does a
lot of Daniel does a lot ofthe UM not so much manual labor,

(44:58):
but yes, you do more thelike treatments all and I do a lot
of them, insurance calls and medicalequipment refilling. And I think part of
that too is our you're you're alittle bit more I don't have kids in
my room all the time, andnot being more patience with that stuff because

(45:19):
though you yes, I had todo so. He was supposed to be
getting speech therapy and it it startedout great, like we were supposed to
practice with his chewing and his swallowingum. And then for some reason some
of his speech therapy was covered andthen sometimes we'd get like a five thousand
dollars real in the mail and um. So this continued on for a few

(45:39):
months, and then we were like, and it wasn't. Every time I
called someone, they were like,oh, yeah, this shouldn't be the
case. We'll run it through again, and so they I was like,
Okay, it's gonna be fine,but it kept happening. So we finally
his speech therapist was either gonna graduatehim or move him down to one class
a week, but we ended upjust having to pull him because of the

(46:01):
insurance nightmare. It took a fullyear and I'm only like ninety sure that
it's resolved right now because the letterthat they sent me it's you just have
to like learn a whole You learnthe medical language, you learn the insurance
like, oh, this should havebeen this way. I wish we could

(46:25):
tell you that this is the firsttime we've heard that. We've yet to
meet a family that doesn't have anightmare story about dealing with insurance. So
sad one doctor, one hospital visitbecause it was supposed to be rehabilitative and
they coded it as actual speech therapy, like for language, and so then

(46:46):
they were like, you need toyou need to get a different prescription,
and so I asked the doctor butit was like an er doctor that did
it. And then they were like, but it's expired, so I can't
do it. It was just somuch back and forth, and so I've
wrote. I got all his paperworkbecause they were finally they sent me a

(47:10):
letter because I had kept um whatis it called? Um? I had
appealed and then I disputed, andyou know, I went through all these
different steps, called talk to peopleonline. UM. One of the people
that I met on Instagram through thecommunity, through the Medically Complex Child community,

(47:34):
works in insurance and she was like, you need, oh God to
get you need to act. Callthe speech therapy company. They need to
send you this and this. AndI was called I think a ubu ten
or ub I want to see yoube forty but I think that UM yeah

(47:57):
and UM yeah. I had alot of red red wine around UM.
But so so I did. Igot the paperwork that she said, I
got extra paperwork. I made photocopies of everything. I wrote a letter.
I put his photo on the letterand it was, um a seventy

(48:22):
page facts I believe of the records. Yeah, did it so many page?
I did this? It is likefifty did No, I wasn't so
many pages. Sorry, I thinkit was like thirty pages. Yeah,
it was thirty pages. Um.It cost me seventy dollars because I'm I
wanted to get it done, andso I chose a bad place to go.

(48:43):
Any um, so uh they theletter that they replied with was a
copy of something that I had sentthem, and I also like, but
then I got some more information umon the n A website that was better
than that letter because I was likeabout the stranger so long ago. It's

(49:05):
like all they did to repeat backto me because they were like, we're
closing your case unless you send usthis information. So I sent them that
information and but yeah, I'm likeseriously, like he was in and out
of the hospital how many times?Like, so we're dealing with you know,
current hospitalizations, current bills, andthen this like unresolved issue on top

(49:28):
of that, for like, andthen Hurricane Harvey before all of this happens.
So you guys, your guys homewas hit by Hurricane Harvey, and
you guys deal with a bunch offlooding. So you guys have been dealing
with um trauma, trauma, trauma, drama. How do you guys stay
positive through this? I mean ourfamily, like without our family's help,

(49:50):
we just because we lived with myparents for six months and yes, and
my parents do not like pets,so for them to house us and at
the time we only had one catand one dog, but they yes,
but they didn't mind that part atall. And then m Daniel's mom coming

(50:10):
down like, um just you know, as often as as we needed her,
and she liked staying in her rvybecause it was like her own little
home out there, and the kidsloved it too. But you know,
we with their help and like youknow, and support and like we we

(50:32):
try to go out and do thingstogether without the children and we're somewhat successful,
like every few months we get todo well. And that's you guys
have mentioned that too about your monthwith Goschot Love hoping to maybe get you
guys outside of the hospital window viewand to do some fun things. Yes,
So what are some things on Sebastian'sadventure bucket list you think he would

(50:54):
enjoy doing? So we you've alreadykind of play well roadmapped home. I
know our trip last summer was cutshort and that was not a bucket list
item, but that's our fear withtraveling obviously, as our trip's getting cut
short. And the Miami trip,yes, yeah, we went to We
went. My family in Miami hadn'tmet the boys because of him being in

(51:17):
the Nike and then co COVID.So in twenty twenty one, we drove
down there and they were under theweather ish and so were my cousin's kids.
Everybody, all the kids were likesick. At the time, We're
like, here we are, andwe already we were. This was when

(51:38):
we were beginning, we were becomingfamiliar with his with how things start with
him um. And we took himto the er in Miami and they were
like, oh no, he's justbreathing fast because he's trying to fight this
illness. And I was like,okay, but he's also got the trigging
and they were like, oh yes. But I was just like, you

(51:58):
guys are it's so Miami right now. I can't. I lived there for
a little bit and I visited onlike on and off growing up and I
was just like, this is soMiami. No offense to anyone from Miami
on families name, we love them. I was just like, this is
just frustrating. And it was justlike in the Bahamas, whenever we were

(52:20):
trying to get on an earlier flightbecause he was sick, the lady goes,
he seems okay right now, Yeah, it's who says that? Who?
Yeah? Yeah, Like I can'timagine a world in which I would
pretend to know what's going on inyour child's body and to the point where
I would have an opinion about it. Just seems like what so now he's

(52:40):
not had his G tube for ayear yet, and now like that's just
what I flash because I'm like,here something that you can see because he
looks relatively like a norm He lookslike a normal kid on the smaller side,
like you know, some just gota little quirks that, like you
know him, if you know thatthat that he's been struggling, like you

(53:04):
can be like okay, but butyeah, like you wouldn't know. So
whenever whenever I take him somewhere andI'm concerned or I need to talk about
how I'm concerned, I'm like,look, there, d two, something
you can see because you can't seethe lungs. Yeah, you can't see
his track ya Um, yeah,so that's that's that was probably like my

(53:25):
most frustrating moment with him was inthe Bama's airport and they're like, he
looks fine right now. I'm like, yeah, give it about one more
hour. You'll see him retracting beforeyou wrap up. I want to shift
gears for just a second. Andthat's okay. Um. Kind of back
to just like your family dynamics,Um, Daniel, how would you describe

(53:49):
you earlier before we got on here. You guys have known each other long
time. You mentioned that you guysmet and like you've known each other since
high school and then some years wentby kind of reconnected and ended up getting
married. But obviously you've had alot of water under the bridge in this
journey together. And I'm curious whenyou, like, when you think of

(54:10):
Roxy now, like what have youseen in her over the years and what
has she taught you through this journey? Oh, it's not just this journey's
I think she's I think she's amazingand capable of doing anything and everything that

(54:30):
she puts her mind to and shedoesn't ever think about it like I'm doing
something special or whatever. She justdoes things and takes care of business and
is impressive. She through this.You know, you can list all the
challenges that we've had with kids andstuff like that. But she's changed her

(54:50):
career like well, I don't know, I could say three times or something
like. You know, she wasa teacher when she was a math specialist
actually my boss, which I guessmaybe a challenge to the beginning. Um,
and then uh left education for alittle bit and like sort of yeah,

(55:15):
I mean, which is a changingand then got a masters and information
science, became the librarian, wentto elementary school, and then back to
a different well a different district elementaryschool than in district elementary school, and

(55:37):
then the middle school that we actuallystarted working at together. She she kind
of got me a job at thebeginning, I say, kind of probably
totally sounds impressive or very adhd,but I'm saying like people aren't capable of
doing that very often. I mean, you can't just like pair all this

(55:57):
stuff in like normal life and um, you know, like a full marriage
and parenting and stuff with like gettinga master's you know, I feel like
I don't know, the studying andstuff was time consuming. Now she's trying
to I mean now she's like teachingherself to code to a certain extent,

(56:20):
and all this stuff. It's likeshe doesn't she doesn't never talk about it,
like like it's a big deal.You know, the insurance stuff.
I couldn't do that. That's like, I mean, I could, but
it wouldn't go smoothly. And shetakes care of so much stuff for these
kids NonStop, and it's just it'slike never ending. I can see that.

(56:46):
Well. I've known her for solong. I always knew that she
was a capable person. But sheimpresses me a lot more the more complicated
things get. And there are somethings that I just have to let her

(57:07):
take care of to a certain extent, and then there are a lot of
things that I just I just takecare of, you know, without without
her having to worry about it.But we worked together well, I think,
and she impresses me because of thefact that she doesn't think that what

(57:27):
she's done is impressive to a certainextent. Everything that we know about the
kids, everything that we know aboutSebastian and stuff like that, you know,
like she said, we didn't geta roadmap. There wasn't like here's
your little handbook and stuff. Halfof it was from her doing research and
then us going through steps that wehad to take the initiative to do,

(57:52):
not just some doctors somewhere or sayinglike, hey, you should go check
this out. It was like,because she found out that you could check
this stuff out, right, Iwouldn't have done that. I couldn't have
if I don't, I'm so justignorant with the way the internet works to
a certain extent that you know,I gave her a hard time sometimes because

(58:15):
of time spent on the phone.But then Sebastian's probably as good as he
is right now because of her.Yeah, and you don't want to take
credit for that. That library sciencedegree coming in, please, you were
good at What about you as seeinga change in him as a dad with

(58:38):
becoming a father and then having Sebastiana lark. How has he changed since
fatherhood? So I know you saidlike we reconnected after college, but I
mean we were friends all through college. We went to rival schools, but
we stayed in touch. If youcan survive that, you can survive anything.
Right, your dad gives me morebriefly. Um, but no,

(59:05):
we stayed in touch, and youknow, I crushed on him on and
off throughout all of that, butwe just weren't. We couldn't be together
in college because I just I livedsuch a shell. I had such a
sheltered upbringing and he did not.And you're like you were you were just
a little bad boy the bandana Daniel. My dad. My dad did not

(59:32):
like it when I would hang outwith Daniel because he said that he was
too manly, Like Daniel's too manly. I don't like some side burns.
Um. But he was like mymy most mature friend probably and um,

(59:52):
and it's funny, I mean,my my dad uncomfortable. But like we
kept in touch throughout college, um, and then graduation weekend, I was
like, hey, we're probably nevergonna hang out again, like do you
want to, Like I'm gonna bein town for a friend's graduation. Do
you want to hang out? Andso that's just when that's when we started
dating. And we were very independent, like we did a lot of stuff

(01:00:19):
with our own friends. We hungout together with our friends. But I
mean becoming parents, yes, yeah, we do I'm very much an introvert,
and he is what like an extroextroverted introvert whatever. He's much more
social than I am, It's whatI'm trying to say. And he loves
going to his friend's house and playingboard games and he's you know, he's

(01:00:40):
like, hey, is it coolif if I if I do that.
I'm like, you don't have toask me. Yes, it's fine,
you know, as long as likewe can put the kids down or you
know, because right now the boysare insane and he's like the miracle worker
with them. But he is justlike knowing him in high school and in
college and you know when when wewere in our twenties, he's just matured

(01:01:04):
and become just like so much moreresponsible and he's the fun parent and the
kids, you know, they're climbingall over him all the time. And
you guys really watched each other growup. Yes that's true, since we
were fifteen you know each other andused the stick pencaps in your hair.
Yes you did. That's how yousat behind me in English. But yeah,

(01:01:28):
I know he's he's That's why Iwonder because he's always my rock through
everything because you know, you likewhenever we have er stays. Like I
was saying, I used to bethe one that would take spashion and now
we all turn it because he knew, like he could see that that I
was. It was just wearing onme. But I would, you know,

(01:01:49):
do everything I needed to do.I put on a brave face whatever,
and then as soon as like hewould come switch places with me,
I just like lose it because youknow, like he's he's the rock and
I you know, if as longas I'm in his arms or you know,
he's given me a big hug,like everything's gonna be okay. He's
the well, he's the optimistic,like big picture guy. And it reminds
me to what you just said earlierabout how when the doctors came in the

(01:02:12):
room, you would just stand behindhim because he's scared. Yeah. Yeah,
so he's he he has enabled ourkids to have as much fun as
they could through these like just difficulttimes, you know, things the last
year has probably you know, thingsare like almost back to normal or I'm

(01:02:32):
sorry, hey all the interruptions andoh that's good. That's real life.
That's what that's what we do.And I've heard enough about me so you
also, I have to match you. Let's talk about you for a second.
What are three What are the thingsthat Sebastian loves the most? What
makes him the happiest? Oh four, you are a really good counter.

(01:02:59):
D know your ABC's hi, heydayDay. Okay, that's a chord.
Oh you're gonna be Oh nope,we're not gonna We're not gonna goes to

(01:03:19):
your tommy. Oh no, itdoesn't go to my tummy. Do you
have accord that goes to your tongue? Look on your tummy. You have
a tube that goes to your tummy, don't you right in there? What
is it? What's that called speakerexcavator? We got those because he was
you know, the healing process wasvery painful and he was very afraid of
it. So that we got carsones because so and it helped him get

(01:03:49):
it. Also called it superpower.That's how here to this microphone you can
hi her purchas. I'm Sebastian atGHO Shout Love. We do amazing things
for amazing families with kids on raremedical journeys. Each month we shout Love

(01:04:12):
for families through the sale of creativeapparel inspired by the Kids. This month's
Every Breath a Gift design is inspiredby Sebastian, a strong and stubborn,
sand loving three year old from Houston, Texas, whose constant respiratory struggles gives
us a fresh perspective on the powerof each breath. Every purchase in July

(01:04:35):
will go toward the purchase of aportable oxygen concentrator and private swim lessons for
Sebastian. Visit our website at goshoutdot love to support Sebastian through the purchase
of a T shirt, hat,tank top, hoodie, or other items.