Episode 12: Navigating Medical Complexity – Mila's Story of Strength, Advocacy, and Perseverance - I Can't Even Imagine

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
I can't even imagine.

(00:06):
Have you heard those words and thought to yourself, neither can I?
But it happened.
You lived it.
But most importantly, you survived it.
We hear you, we see you, and we're here to talk about it.
We're two moms, lifelong best friends, and we've both experienced traumatic life-altering
events involving our children.

(00:29):
So the last episode that we put out was fucking hilarious to not expect that.
I know you had kind of talked about the idea of doing it, but I thought, ah, she's going
to be too exhausted.
She's got too much on her plate.
She's not going to do it.
And you're like, I'll check this out.
The 2024 wrap-up.
Yes.
Yeah.
So super funny.

(00:49):
And it got me thinking, because earlier that day, and you did take a piece of this,
not that day, but the last time we had recorded when we did some banter, we were kind of going
down memory lane of college.
And I know that we were kind of like scrapped for time.
So how this topic didn't come up was kind of beyond me.
But going down memory lane in college, how we did not talk about fucking Brian.

(01:11):
Fucking Brian.
Fucking Brian.
So there was this guy that had an interest in Victoria named Brian, and they met in your
biology class, right?
Yes.
But let me just back up and say it was a very friendly interest.
Right.
So the banter wasn't really, we didn't really date or anything, but it was very friendly
interest.

(01:32):
We were friends.
It was three of us in the class, and we would just talk back and forth.
But he lived off campus.
So I was like, you can come to my dorm and study.
Let's study together.
Because it was college biology.
It was something in the biology, something.
Yeah.
This was what, freshman year?
Uh-huh.
Yeah.
Yeah.
So at that time in college, that was when Dane Cook, a comedian, was kind of like in his

(01:55):
heyday, and he had this one particular special out where he talks about the friend that nobody
likes.
Yep.
And if you don't think that you're that friend, chances are you are that friend.
Because everybody's talking shit about you behind your back, right?
So this Brian became the subject of this whole comedy standup.
Because in the comedy standup, he calls him, his name is Brian.

(02:17):
Right.
He has this whole story about the friend that nobody likes, and his name is fucking Brian.
Right.
So Brian was totally cool.
He's fine.
He was coming around.
He was kind of like friend group.
You know, Victoria and I lived together in the dorms, and we had people over pretty often.
And we noticed something about Brian, the more that he would hang out.
He really just made himself at home.
Oh, he would walk right in.

(02:38):
And eat all my fucking applesauce.
All the applesauce.
And this really chapped Victoria's ass, as she would say.
I'm on a college budget, and I buy applesauce in like vats, unsweetened applesauce.
I don't know what it is about the unsweetened applesauce.
I love it.
I could eat it in vats today.
I just pour the whole jar in your face.
I loved it.
I loved it.
And then you could reuse those jars, those glass jars for anything you want.

(03:00):
But this motherfucker would come in and just spoon feed himself out of the jar.
With the dirty spoon.
With my applesauce.
And then put it back.
Yes.
And so it got to a point where I had to leave notes on my applesauce.
You know, stay out fucking Brian.
Stay out of my applesauce.
Yeah.
Drink the beer.
Just don't eat my applesauce.
Right.

(03:20):
I'm not asking a lot.
That's right.
I came a running joke, you know, this Brian became fucking Brian.
And then one day I was leaving to go somewhere and I pulled out of the parking space and
I start to drive through the parking lot and out of nowhere a human being comes darting
out on a skateboard between cars without looking doesn't stop and I literally hit this person

(03:44):
with my car.
I hit a person with my car.
Not many people can say that.
I literally hit a person with my car.
You called me.
I hit a person with my car.
Yes.
Okay.
And this person, not only did I hit them with my car because they didn't stop on their
skateboard, they flipped over my car like something you would see in the movies and

(04:05):
landed on their fucking feet.
And I get out in a panic.
They smashed my windshield with their body, right?
I'm completely devastated.
I don't know what just happened.
I get out and I look and it's fucking Brian.
Yeah, fine as it could be.
Fine as a fiddle, perfectly not a scratch on him.

(04:25):
And I call Victoria and I'm like, you're not going to believe this shit.
I fucking hit Brian of all people.
I'm so thankful that it was him.
By the way, I hit Brian with my car and you're like, what?
Because he's from California and he's just like chill.
He was like, it's all good dude.
Oh yeah.
I'm just going to keep on skating.
Like he probably he got back on his sk- I'm like, why did you stop?

(04:49):
What the hell just happened?
I literally hit you.
So you know, on the whole, I ended up having to get my windshield fixed and probably lied
about it to some company at the time to say that it was a football or some shit that hit
my windshield and not a human.
Not a human being.
But this was like he was he was totally fine.

(05:10):
Like I didn't get sued.
You know, I'm so fucking lucky.
But that it was fucking Brian.
I don't even think I told my parents about that.
Wait, no, we were like 18, 19.
Why would you tell your parents about that?
We got this.
We're adults now.
I hit a person.
I know.
I felt bad when I hit an animal.
I've done that.
Oh my God.

(05:31):
I hit this dog dude.
Oh no.
I was leaving an Airbnb and it was like dusk and I was going down this long road and I
saw this thing in the like in the grass on the right hand side.
But it was almost like tumble weedy.
Like it was kind of blowing in the wind.
So I thought maybe it was a bag or something.
But there's nobody on the road next to me.

(05:54):
Everything was fine.
And all of a sudden this car on my left comes speeding up next to me and I'm getting closer
to this thing.
And as soon as I noticed what it was, it darted out in front of my car.
Dude, I saw it and I can still see it in my mind.
It was the tiniest, fluffiest little white dog with a blue bow on its head.

(06:15):
It's weird how the vision and the memory pick something up but like after the fact.
Because it just, and I made the biggest mistake of looking in my rear view mirror.
I screamed like bloody right.
And I'm crying and I'm like how do I turn around because it wasn't like I could get

(06:37):
into the other lane.
And it's dusk at this point.
It was so, it came out at my car probably, there was probably 10 feet.
There's no way I'm going 60 miles an hour on a long road.
It's over for this thing.
And I'm thinking, I'm like picturing on my head these little like seven year old kids
just tacking up little, you know, missing posters of their little of Fluffy.

(07:02):
And I just mowed it down, dude.
It was the saddest thing.
Oh, it was horrible.
How long ago was this?
Two or three years ago.
Oh really?
Oh man.
It's still pretty fresh.
Horrible.
And you feel, and you feel so much more worse about that than I did about hitting Brian.
It was fucking Brian.

(07:23):
It was fucking Brian.
But I was like, it's fucking karma coming at you for beating an ass.
You were eating applesauce.
For stopping eating the applesauce, dingus.
Today we welcome Bailey Susage, female leadership development consultant and mother of one special

(07:46):
little girl named Mila.
Welcome Bailey.
Thank you for joining us today.
Thank you for having me.
It's so lovely to have you in the studio.
We like it when people come in studio.
It's way more fun.
Oh yeah.
Better energy.
Yeah, true.
Absolutely.
So tell us about Mila.
All right.
So when I was pregnant with Mila around 36 weeks, they started to think she was small

(08:10):
on the smaller side.
So we monitored for the next couple of weeks and then at 38 weeks they induced me and they
figured that she would be a feeder and a grower is what they called it.
When she was born, she was born just under four pounds and immediately taken to the NICU

(08:30):
and we really didn't know what was wrong and they kind of started looking at everything.
My placenta, if I, you know, what was going on with me, but I was completely fine.
The placenta was at an average size.
So they started doing a lot of testing on Mila and coming back to us with some really
scary things without even knowing if that was conclusive.

(08:55):
I remember we were, I think, Mila was ours as far as being born and they were telling
us she could possibly have Turner syndrome and my husband and I sitting in the hospital
room with both of our parents outside, like waiting to see us and to see their new grandchild
and my husband and I just crying because we had no idea.

(09:18):
They told us that Mila will be intellectually delayed.
She will never live a normal life that they weren't sure what was going on, but these
were certainties.
Wow.
And as a new mom, our first child and a new parent, it's a lot to take in.
And nothing was picked up on ultrasounds.
I mean, I know her size was off, but nothing was picked up on ultrasounds at all?

(09:43):
No, and we did the genetic testing at five months and everything came back completely
fine.
Interesting.
That's weird.
Yeah.
Like she just stopped developing after a certain point?
They honestly, they don't know because at the measurement of the spine, everything was
completely fine.
And I had a feeling she was small even earlier in my pregnancies because there was a couple

(10:03):
of women who I worked with who were pregnant right at the same time and you could see the
elbow in their belly or the hand or the foot and you could never really see Mila in my
belly at all.
So I kind of had this feeling she was small, but we obviously didn't know it would go in
this direction.
Right.
I'm surprised they would take her early.

(10:23):
That's what I was thinking also.
That was going to be my question.
Why would they want to take her early if she was so small?
They would want to give her a little bit more time to cook.
A lot of unknowns.
So we spent the first year, so she spent about 17 days in the NICU.
And when they sent us home, we were doing blood work every week.

(10:45):
One of the big things at that time is she had something called high AFP and that's
alpha-fetal protein.
And your alpha-fetal protein, as you may know, is related to tumors.
And so when you're creating a baby in your belly, the mom has a higher level of AFP and
so does baby because it's creating all the organs.

(11:05):
And once the baby's born, the mom and the baby flush out all of the things that were
not needed to grow to do anything more because it's developed everything it needs to develop.
So when you have a high AFP, that could mean that there's additional growth, aka tumors,
cancer.
So we're testing every week for months upon months and looking at this AFP, which you're

(11:29):
supposed to be between a, I think at this point, I'm forgetting things, but between
a one and a 10 meal is like 30,000.
And we were doing ultrasounds on her belly, on her head, on her chest, all over her body
every couple months.
And finally, after maybe six months or something, of having her have blood work every single

(11:52):
week, I was like, this is not giving us any information.
All we're doing is pricking her.
So let's move this to once a month.
Now let's move this to every three months and stuff.
So throughout Mila's journey, I of course have learned a lot of things, but part of
it is learning how to be an advocate when you're receiving all of this information and processing

(12:15):
it.
And they didn't have a protocol because they had no idea what was going on with her.
So it's not like they could have said, well, this is how we're treating her.
We're just going to throw things out there and see what sticks.
That's got to be ultra frustrating too.
So at a year, they did a full body x-ray because they wanted to look for anything genetics

(12:37):
with her bones.
And they found out that she had hip dysplasia.
Meanwhile, my husband and I had taken her to an orthopedic doctor just a couple months
prior to get her hips checked.
And she was clear.
And it was one of those appointments where we were like, oh, we finally had a win.
Oh, yay.
For us.
And then a couple months later, they're like, no, she has hip dysplasia.

(12:59):
And what is that?
So it's when the hip is not completely in the socket hasn't completely developed.
So they were able to do something called a closed reduction.
And it's just moving the socket in or moving the hip back into the socket.
And then they put them in a spica cast, which is a full body cast.

(13:22):
It's from her chest all the way down one leg and halfway down another leg.
And it's a cast of what you think of it.
It's a hard cast and it's horrible.
You know, my baby is 14 months old and just moving her around the place because she cannot
move on her own.
And she had to wear that for five months.

(13:42):
She had it replaced halfway through because, you know, there's an opening for the, for
the diaper and the things still get up there and stuff.
So from a sanitation perspective, they have to change it up.
That requires surgery.
And so we got that off at, I guess when she was about 18 months, 19 months.

(14:03):
And then we went for her three month checkup and I had noticed that her spine was curving.
And so we're about to leave the appointment with orthopedic surgeons saying her hip looks
good, you know, we're on the right track and stuff.
And I said, can you, can you take a look at her spine?
And my husband's like, no, we know, like, like, we're okay.

(14:25):
And comes back in, looks at her spine.
They do some X-rays and find out she has scoliosis and kyphosis.
And what's the difference between the two?
Yeah.
So scoliosis is your S curve and your kyphosis is when it comes into a C curve and it comes
out.
So I'm just looking like a hump on your back.
So she had both.

(14:46):
And it's really rare for a child to have what they call like infantile scoliosis and kyphosis.
So they start either casting right away or bracing.
So we went the bracing route that was recommended from our doctor.
And it's not, it's not to cure.
And I'm not using that term loosely.

(15:07):
Like it's not at all to cure.
It's to slow the development of the curves down.
So you know, so we're, and at that time, right, all of this is coming back.
At that time, Mila stopped eating right at one.
So she just stopped eating and eat types of food.

(15:27):
So at the same time we're going through the hip dysplasia, I'm trying to find an eating
clinic to put her into eating therapy.
And when somebody says that a child or anybody will eat when they're hungry, have a child
who doesn't eat.
Right.
That's just not the case.
And I don't know if Mila just didn't feel hunger or what, but she just would have never

(15:50):
eaten again.
So put her through eating therapy, doing these surgeries, then finding out that she has scoliosis
and kyphosis.
Kind of feels like the hips keep coming.
Were you able to at least get anything into her, even like a toddler formula or something
that would get her some kind of nutrients?
Yeah.
So we did.
We gave her lots of yogurt that we fortified and did that as much as possible.

(16:14):
She eventually did graduate from the eating program and they were wonderful.
But whatever problem or whatever challenge Mila has with that, it still exists to this
day.
So I don't know if it's genetic.
I don't know.
You know, just from a cellular perspective, something is infiring correctly to make her

(16:39):
want to crave food and nutrition.
Yeah.
Did you ever have to go like a G tube route?
She has one now.
She got one when she was four.
So we did the bracing and I started looking around for additional orthopedic surgeons.

(17:00):
We were in Baltimore, sweet Hopkins, kind of the number one place you can go.
But I just wasn't thrilled with everything.
So I started looking around and I was able to meet with, because then enter COVID, I
was able to meet with the top eight out of the top 10 orthopedic surgeons in the U.S.,
like in person slash by video when COVID happened.

(17:23):
So I finally, I landed on the Paley Institute, which is in West Palm Beach and he, Dr. Feldman,
he was a doctor from New York and then came there as the spinal specialist.
And I just fell in love with him.
He looked at Mila as a whole child and looked at her as we're going to get, we're going

(17:44):
to tackle all these things together.
And so he of course wanted to put off spine surgery for as long as possible because the
earlier you start messing with the spine, the more problems you can have.
And I've heard that too from people who had spine surgery.
They end up having multiple spine surgeries.
Yes.
Yes.

(18:05):
So, you know, we did the bracing thing every time we went to an appointment at the Paley
Institute, it was like a completely stressful thing, not that, not because of Dr. Feldman,
but because of the news just wasn't great.
And then we moved down to Florida and in 2021, and at about three months after we moved here,

(18:27):
Mila had a cough that wouldn't go away.
So despite all of what we call Mila's complexity, she's never really sick.
And she had this cough that wouldn't go away.
And she finally, you know, we took her to the doctor, gave her a nebulizer, she ends
up in the ER, two days later her lung collapsed.
So we, she's four years old, just over four years old, and we end up spending three months

(18:52):
in the PICU.
Coming out of there with a G-tube, like you said earlier, a trach event, you know, just
a completely different life than what we walked in there with.
We knew Mila was probably operating at a lower capacity of breathing because one of the things

(19:14):
that they were trying to do when they were trying to decide whether to intubate her or
not is they checked her CO2 levels.
And her CO2 levels were like in the 80s, and anybody in the 80s would have been passed
out, where Mila was like chit chatting with us.
So her baseline is lower than the average person.
Exactly.
So prior to the lung collapsing, how was her, I mean, I know that her development was different

(19:36):
than the average child, but how was her development in your eyes?
Like where was she?
Yeah, I mean, her development was different physically because her spine curved, you know,
so it kind of inhibited some of the things that she was able to do physically.
But I never loved, liked, or would allow people to use the term delayed because if Mila's

(19:57):
spine didn't have curves in it, then that wouldn't be an issue.
You know, she would have been reaching certain milestones.
So for me, this was something of like, well, like let's help her body function properly.
And then that will, then, and the development will come with it.

(20:17):
And intellectually, she was always amazing.
She did have speech delays, so she was in speech therapy, but I taught her sign language
at an early age that was one of my degrees and she was like, like almost fluent and
sign.
Hold up.
Love that.
We both, we love sign language.
Love it.
It's so, it's such a beautiful language.
And I think if you are a visual person, it can be easier for you to be able to adapt

(20:44):
and stuff to it.
I love it.
Mila and I will still use some signs here and there.
She was in the hospital for those three months and it was, I mean, it was terrible.
We were, she was never alone, not one time.
Between my husband, myself, my parents, and my in-laws, we were, somebody was always with

(21:07):
her day and night.
That was how I was for two months when we were in the hospital.
I was always with her.
Somebody was with her.
I couldn't imagine my four-year-old waking up and not having somebody she recognized.
Did you notice other parents couldn't be there?
Did you see that a lot?
I did too.
It broke my heart.
Me too.
And no judgment because, you know, I think, they have other kids.
What if you're a single mom?

(21:27):
Right.
They have other kids.
They work an hourly position and stuff.
I mean, it just, it's absolutely heartbreaking.
So it's certainly a privilege that we were able to provide that for Mila.
And so when Mila was intubated, you know, they told us that they, you know, they're
heavily sedated and stuff to make them comfortable.

(21:49):
And so to really not expect much out of her, and one of the PICU doctors said, I had one,
you know, he's been a PICU doctor for, I think, decades.
And he's like, I've had one patient that was up, you know, coloring and watching TV and
stuff.
And Craig looked at him and he said, that'll be Mila.
And I was so distraught.
I was like, that's absolutely not going to be Mila.

(22:10):
While they're intubated?
Yeah.
Oh, wow.
Okay.
And a couple of days later, lo and behold, Mila's sitting up watching things, painting
her nails.
Like at one point she was putting lipstick on her lips, which was going all over the,
like the tubes, which look like blood because it was red lipstick.
And, you know, we had to like warn the nurses because it's all over the tape and everything.

(22:32):
And she wasn't uncomfortable with that in.
I imagine at first, he probably was like, what, when she started waking up.
Like what is this?
Yeah.
Yeah.
She was, and we tried everything.
We extubated her right before Christmas.
So taking the intubation out and to see if she was able to breathe on her own.
And unfortunately, like after days and days, they had what she called little reserves.

(22:57):
So kind of back to the whole eating thing.
Mila never ate a lot.
So, you know, she was, she was four years old and she was like 13 pounds.
Oh, wow.
I mean, she was a small, she's a petite individual to begin with and stuff, but, you know, she
was losing weight.
We weren't really seeing that and stuff.
And of course, breathing, I didn't know this breathing takes a lot of calories and stuff,

(23:22):
especially at that age.
So, you know, she had very little like fat reserves to kind of help her in the healing.
So they tried everything they could after they, um, extubated her, you know, even, I
remember, um, then putting this mask on and it, like a CPAP mask, basically, and then

(23:42):
this horrible smelling gas, um, to help the lungs.
And she just smelled like her hair, her skin, everything.
It was just, it was just so devastating.
And when I think about those memories, that was one memory that it took me a really long
time to think about again.
Like it was, it was such a hard, every time I went to unlock that door, I had to shut

(24:08):
it again.
I just, it just was too difficult.
Well, something about smells will bring you right back.
Right?
Just, you know, just in general.
And then you can probably still smell it.
Yes.
So, and that just makes it even, you know, harder to process later.
More real.
Yeah.
So, they, they had to intubate her again, um, and then once they intubated her again,

(24:32):
they brought us to the table to call us for a meeting to say that, you know, they wanted
to put in a trach.
And, um, you know, it's obviously a world that we knew nothing about.
And, you know, at this point, Mila had been there for probably about a month and a half.
So we knew the staff very well and all the nurses, all the doctors, all the RTs and

(24:58):
staff.
So, you know, the people who had kind of continuously worked with us were in that meeting and my
niece was there.
My niece, um, she's 25 now.
She lived with us when she was in college and she's Mila's best friend and Craig's
and my best friend as well.
And so really, like we call ourselves the core four.
And, um, so, yeah, it's really cute.

(25:20):
And so when we, when we sat there for the meeting, my parents were there as well, but
kind of when everybody left and just a few of the doctors, it was Craig Sidney and I
who stayed there to have kind of deeper conversations and stuff.
And, um, and I remember like looking over at the doctor and saying the statement that
I knew my husband couldn't.

(25:45):
Will is this, is this worth doing?
You know, is she going to survive?
And he looked at me and said, we'd be having a very different conversation if I didn't
think so.
Okay.
But I had to, I took everything in my soul to ask if my child was going to live.
And, but I knew I couldn't put her through another surgery, you know, because they're

(26:09):
doing procedure after procedure at this point with her.
And it's going to be so frustrating to not know what you're working with.
Right.
Just taking the hits as they come.
Right.
Right.
And the level is so high, you know, you're not thinking straight and just when you have
a diagnosis, typically you're given options and you can research and Google and Google

(26:30):
will scare the shit out of you and all those things, but you've got none of that.
No, no, we're just making these decisions on the fly with her.
And I mean, the point of that meeting was to allow us to absorb the information, of
course, but you know, it's still, it's not like, let's, you know, we can wait, you know,
a month while you figure this out in your heart and stuff.

(26:52):
And this is prior to her spine surgery.
Yes.
Okay.
Yeah.
So, and even the doctor who had said this about a different conversation, he said, you
know, you had, you had the intuition that something was wrong because when we took her
to the doctor initially, they said, you can take her home or you can take her to the emergency
room.

(27:12):
And so we needed to take her to the emergency room.
So he's like, you had the intuition that something was wrong then.
You've had the intuition that we needed to intubate her again because when they intubated
her the second time, they wanted to do it soon because it was Christmas and you don't
have full staff and stuff.
And I was like, okay, we need to do it.
So he's like, one thing I am never going to be able to explain to you with science is

(27:34):
a mother's intuition.
So what do you think we should be doing?
And that's awesome.
Yeah.
Yeah.
Whether rare.
Yeah.
Whether he like really, really meant that or not.
Like I did appreciate that agency and I appreciated that perspective of it.
So you know, I, my husband, I had a lot of conversations and stuff and we decided to

(27:58):
do the trick and then she was in the hospital until she came home on Valentine's Day, 2022,
which I think is like somewhat symbolic.
I don't know.
I just out of all the days.
Yeah.
So, I mean, we really just spent the next number of months surviving to be honest.
With you.
I mean, we walked into our, we were renting an apartment at the time because we had just

(28:19):
moved down here and all of the supplies were sent over from the DME company.
There's 15 boxes of supplies of supplies.
I have no idea what any of these things are and trying to organize this stuff.
And now we've come home.
We have a ventilator.
We have a suction machine.
We have a food pump.

(28:40):
We have a nebulizer machine.
We have all of this equipment that I don't know how, I mean, they've trained us in the
hospital, but ultimately I don't know how to use and kind of, you know, learning.
And we have a home health nurse who is there and the DME company, durable medical equipment
company sends their RT out, you know, be with you for a bit and work with you and stuff.

(29:04):
So it's not like we're just like laughed up to our own devices, but still it's like
really, really scary.
And Mila was really sick for a good number of months when she came home.
We were venting her G tube, which essentially means like letting air and bile out of her.
She was being suctioned all the time to get phlegm or mucus out of her lungs.
She was on the vent all the time, just taking her out for a walk for 10 minutes.

(29:28):
She was on a pulse ox all the time because we were monitoring her oxygen.
You know, it was to take this 13, 14 pound child and a buggy and a wagon, the equipment
weighed probably four times as much as she did.
At least, yeah.
And at that point we had a vent that was about 25 pounds.
Now her vent is maybe four and stuff.

(29:51):
So I mean, and this equipment looks scary, like really scary, very industrial and stuff.
No fun colors.
Oh yeah, super gray and black.
You should get into that business, like decorating, you know, bedazzle people's equipment because
it especially for little kids, it makes it more, not exciting, but it just not so sterile.

(30:14):
Yeah.
Well, one of the first things I did when we moved into our current house, so we came
home in February, we moved into our house in May, is I, what I call it, I de-hospitalized
her room.
So I took the vent off the vent stand and put it on a really pretty pedestal table.
And then I got another stool to put the humidifier on and, you know, everything safe and connected.

(30:36):
Like I, you know, obviously safety is our first concern and stuff.
And I made sure all the wires were like Velcroed up underneath the bed so they weren't just
laying out.
And we put things away when we're not using it.
Like we don't need to have the pulse ox machine out all day when she's not on it.
And so, so, I mean, I try to make her room look as much of a, now she's seven, a seven

(30:59):
year old, she deserves that.
She doesn't need, she doesn't deserve to be in a medical room at home.
So yeah, so we were home like, we went to a doctor's appointment in West Palm for her
orthopedic surgeon in December.
So that was almost a year, about 10 months after we had gotten home.

(31:21):
And I knew she had abs fine surgery.
Like I knew all of this was a band-aid and that we had, we had to have spine surgery.
And in fact, I made an appointment with a doctor in Atlanta because I, if, if Dr. Feldman
wasn't going to do it, I was going to get somebody to do it.
And they did the X-rays and he looked at us and his literal words were, this is not sustainable

(31:42):
for existence anymore.
Wow.
And, you know, I mean, how do you process that information that her organs will just shut
down?
She essentially was bent over with her spine.
Wow.
So he, they got us in kind of ASAP in April.

(32:02):
So about four months later.
That's ASAP.
If it's not sustainable for existence, in the medical community, that's ASAP.
Yeah.
Yeah.
That's nuts.
So, to go into a halo, it's, you know, it has to be very methodical.
Sure.
So that, I think that's, you know, why.
So we packed up and had rented an Airbnb for two months to live over on the East Coast.

(32:30):
And what a halo does is it was literally the thing I had been scared about since her initial
diagnosis, because it looks so archaic.
So they put pins into your skull and you have a, then you have a metal piece that goes around
it and then they attach weights and the weights essentially pull your neck up and your spine

(32:53):
down.
Okay.
I think I know what you're talking about now.
So when you have severe scoliosis and kyphosis, you can't simply just go into surgery and
try to straighten out a spine because that can be really damaging and a shock for the
spine.
So you need to slowly, what we call stretch it out.

(33:14):
So she was in a halo inpatient and West Palm for 28 days.
And then on day 29, they did the spine surgery.
And I mean, that was, that was our life living through that.
We, in order to get Mila prepared, we created this book.
Another mom had given me a similar one that she had done for her daughter who was in a

(33:36):
halo and just talked about Mila squiggly spine and, you know, kind of prepared her for what
was going to happen.
And the one thing that we were very, very adamant and careful about is we never, ever
use a term that we were going to fix her spine.
And we made sure everybody in our community knew that because her spine was not broken

(33:58):
and she was not broken.
So she did the halo for the 28 days of the spine surgery.
And when they came out to tell us what a success it was, I mean, obviously we were so insanely
relieved.
Mila wasn't big enough to get something that they call magic rods, which magic rods, you
don't, you can just go into an appointment and you, and the doctor can use a magnet to

(34:21):
lengthen the rods.
So it's no surgery at all.
But Mila just doesn't have enough like girth on her, you know.
And so we have to go in and have surgery every three to four months to lengthen her rods.
So we're hoping like our goals have been to get her bigger and stronger.
It's a challenge because of, I think, you know, the way that her body interacts with

(34:45):
things and stuff, but, you know, we've made progress.
And then last year we, she had jaw surgery.
It's called jaw distraction surgery.
And it was to pull her jaw forward by three quarters of an inch and that will help eventually
when we are able to get the trach out because it will help for breathing and for swallowing.

(35:06):
And that was putting in two pieces of metal into her jaw.
And then a couple of days after surgery, we turned those pieces like a millimeter a day,
I think, and then, and over the course of two, two and a half weeks, it pulled her jaw forward
and it was horrible.
Like it was, it was, it was worse than the spine surgery.

(35:30):
As far as pain.
A pain.
And yeah, and she, she had an infection.
So you know, we're having to clean this area, these areas.
Like my husband's literally holding her down so we can clean an infected site that has
metal in it.
And it was awful.
And, you know, it did what it needed to do.

(35:52):
And we, we were going to have to do it.
So we just kind of took a deep breath and moved forward again, very methodically and
strategically and stuff with our doctors, but we knew eventually we were going to have
to do it.
So over the past, I'm not even thinking about her three months in the hospital over the
past year and seven months, Mila's had seven surgeries.

(36:14):
Wow.
Well, up until now you're saying in the last year and seven months from now.
Yeah.
Dang.
Yeah.
Strong little girl.
Yeah.
So what kind of like financial turmoil did this put on your family?
I mean, obviously she's so medically complex.
Somebody has to be with her at all times.
And, you know, when it comes to the whole defeating process, like you were saying about

(36:37):
adjusting her job, you know, I'm sure she's gotten medicine.
She's got to take like, how do you guys manage all that?
It's really expensive.
You know, when we were getting out of the hospital, I was able to find that and nobody
really knew this.
The case workers at the hospital, which is just like crazy.

(36:58):
But I was able to find that she felt she would fall under a Medicaid medically fragile.
So our income does not matter.
So Mila is covered first by my husband's insurance through work and then any anything
that hit our insurance doesn't cover that program, that Medicaid program does cover.

(37:21):
But that in and of itself is a turmoil.
Like early last year, we were transferred over to full Medicaid accidentally by Medicaid
and then told that we don't qualify for Medicaid, which we're like, you know, no kidding.
And then so had a whole lapse of service for a month because they made a mistake because

(37:45):
we pay a premium for her Medicaid.
It's not like, you know, it's not a free program for us and stuff.
So we're able to get a lot of her medical stuff covered, but we do a lot out of pocket.
All of her therapies we pay for out of pocket.
And recently over the past six or seven months, we've been working with a functional medicine

(38:05):
team and they've put her on a whole bunch of different supplements.
We've done a bunch of different tests, dual year-ends, live all this stuff to really look
at the metabolic stuff going on, all of that stuff's out of pocket.
She goes to a private school, you know, we're fortunate that we're able to provide for her.

(38:26):
We also are very fortunate to have the support of my parents.
But you know, I can't imagine what people go through.
So were you able to continue working or did you stop working?
I took a step back and in some ways I'm a consultant.
So you know, I can kind of work as much or as little as I want to.
The problem with taking a step back is you're not doing business developments, which both

(38:48):
of you understand as small business owners.
So you know, when you're trying to step back in, that makes things a little bit more difficult.
I took a real big, so did she.
We both took a big step back.
We had to pause our businesses for a while.
Well, I didn't have to pause.
I had people to help.
Yeah, luckily you did.
I'm a one person show.
I've got employees and stuff that stepped up and took all of it.

(39:08):
I mean, I just did the background admin stuff when I could.
But like when I took about six, seven months off or something like that, when I did my
toes back in, I don't know about you, but I got really overwhelmed and I was like, what
would have been like regular or maybe even just slow for somebody else?
I was like, hold up.
I can't do this.
Yeah.
I just can't.
Well, and it's like some days you're just simply getting done the things you need to

(39:32):
get done for them, for Mila, you know, so there wasn't any extra capacity for anything
else.
Well, you got to go to this appointment and that appointment.
I mean, we did speech therapy, occupational and physical therapies for outpatient for a
year.
And you were up in Orlando.
We were up in Orlando for rehab.
So we came home after that and did outpatient for a year.

(39:56):
And it was just hard.
It was a lot of driving around because they didn't have, they originally started her at
the adult center because the social worker up there said that the child center here, the
John Hopkins, because John Hopkins doesn't have a hospital here.
We just have the outpatient kind of like arm.
And so the doctors will come down here once a month and everything else is overseen by

(40:20):
just the regular staff and they didn't have room.
So the only thing that had room was the adult center.
But the adult center kept talking to her as if she had, they kept saying a concussion.
They kept, they only see hip replacements, knee replacements from elderly people for
the most part.
So they don't have traumatic brain injury, like a lot of knowledge or a lot of experience

(40:45):
with it.
So it was very frustrating.
And when we went to her follow up a couple of months later with the John Hopkins neurosurgeon,
he comes down from St. Pete once a month.
He was like, no, no, no, wait a minute.
Why aren't you here at the pediatric?
And I said, because when the social worker up there called, you guys didn't have room.
He's like, what?

(41:06):
We can get, she's my patient.
I can get her in.
So then they got us in and that place was wonderful, but could never get us on a regular schedule.
So I'm doing speech therapy at 9am, 45 minutes away, 9am, coming back for OT at 3pm.
And then tomorrow we're going to go do physical therapy, you know, and it was never like,
it was multiple days a week.
You can't work.

(41:27):
No.
Well, and even like with her spine surgery, so the Paley Institute has a PT arm to it and
they're fantastic.
Like they're so positive.
That's how this child's, the children's place was.
Yeah, they concentrate on what like what Milla can do.
I absolutely love them.
So when we go for surgeries, we stay a week so she can do PT over there and they're completely

(41:48):
on board because they know that we institute all this stuff at home.
But you know what I mean?
That's a week of staying in West Palm and paying for an Airbnb.
And you know, and we have to get a two bedroom, two bath because we bring a nurse with us
and to help us with everything.
Because somebody has to be with Milla when she sleeps.
So Milla is no longer like, she's not on the vent during the day at all.

(42:09):
She's only on the vents at night.
We no longer use a feeding, a feeding pump.
We do all bolus feeds because I blend all her foods.
So that was another new expense.
You know, we do all organic, I blend everything, then add supplements, making sure that she
has like all of the different three, six, nine oils and the micronutrients and micro

(42:30):
minerals and you become and you have become an expert at many different things.
And never expected.
Completely.
And should be nutritionists.
Help us all out.
Well, and it makes you see the world so differently.
And to be honest with you, what we've done from that perspective, working with, so Carla

(42:50):
is our go-to person on our functional medicine team.
She's made the most difference other than our orthopedic team.
And that's not a slight on any of the doctors at all.
It's just not necessarily how they're trained.
And so, you know, she's really again, looking at this from a metabolic and cellular level.
So one of the tests that came back was that Mila had all this ammonia in her belly.

(43:16):
And well, how do you get ammonia from a breakdown of proteins and meat?
Animal proteins have the most ammonia.
So she put her on this, something called a Sparga, which is a derivative of asparagus
and it neutralizes it.
There is no chance that at any GI appointment, again, bless, right?
Right.
They bless.

(43:37):
They love her GI doctor, but no point were they going to get there.
And then all of a sudden we started using Sparga.
We started going down on animal protein and up on like lentils and stuff.
And meanwhile, did a sensitivity test prior.
So I know exactly what her body would be inflamed to.
Her belly no longer hurts.
That's amazing.
Right?

(43:57):
That only, not only a functional medicine doctor.
Yeah.
I love that realm of the medical world.
Functional medicine, integrative medicine, all the holistic stuff.
That's my.
Your jam.
Yes, my jam.
I could afford it out of pocket.
I would go.
Yeah.
That's all I would take my family to, but it's so hard.
Going back.

(44:18):
I have four kids.
I know.
It's like impossible.
Going back to that financial burden thing.
I mean, that's what when we had to go fund me when my son was going through cancer treatment,
a lot of that funds not only paid our bills and paid our mortgage when my husband was
out of work, but a lot of that money went to those extra therapies.
It went to, we did a lot of the integrative stuff.
We did a lot of chiropractic care.

(44:39):
We did a lot.
We started doing acupuncture.
We went and saw a homeopath.
I'm on board with it.
And I'm so glad it's made such a difference for her.
That's amazing.
I think the key thing because a lot of people say, you don't know much about functional
or integrative medicine.
They think that it's just like using like plants and herbs and stuff.

(45:00):
The first thing Carla said was, I want to talk to all your doctors.
Yes.
That's how it should be.
She's like, we're all a team.
And our doctors who talked to her, our pulmonologists in West Palm Beach, he couldn't have been
more thrilled with everything she had to say.
That's exactly how it should be.
He's like, oh, that's exactly what I think.
I think it's nutrition and I think it's getting her bigger and stronger.

(45:23):
And then she'll have the capacity to be off the trach or be off the vents at night.
That would be the first step.
And then the next step would be capping the trach so that she's completely breathing on
her own.
And then we can take the trach out.
But we also have to wait until she's not having surgery so much too.
Yeah.
Because that makes it easier for them.
Correct.
It's a secure airway.
Yeah.

(45:44):
Yep.
That's how it was with our G-tube.
You have to have it in for X amount of time for the stoma to heal.
Because of course, as soon as she got it, then I would say about 10 days after she got
it, then she was like, oh, pudding.
She was starting to become interested in food by mouth.
But prior to that, there was nothing.
She was not communicating.

(46:05):
She was not looking you in the eye.
She wouldn't open her mouth at all.
And I think a lot of that had to do with the way that her neck bent or hit her face or
however, because there's still such a huge gray area over what exactly happened.
I think her jaw hurt.
I think she hurt her jaw somehow.
Sure.
And she wouldn't even open her mouth, wouldn't open her lips, or in having your mouth open

(46:26):
intubated.
Right.
For a long time after a major accident.
Swallowing is hard.
Yeah.
She just wouldn't even refuse to open her mouth.
Her lips were completely chapped and dry and just, you know, oh, it was so awful.
Those small things are heartbreaking.
It really is, especially just seeing your kid, you know, like that too.
And it was so, yeah.

(46:48):
How did this whole journey affect your marriage at all?
Yeah.
I mean, it definitely has affected us.
We worked really hard to come together.
But both of us haven't always been the best at that.
There are certain periods of time where I was just angry and he's the easiest person

(47:11):
to be angry towards, not at, you know, nothing was his fault or anything, but because he's
there.
He's there.
He's just a brunt.
He's always, he's going to, it's unconditional love between a husband and wife or it should
be.
Right.
So it's easy to throw your shit on somebody who's going to love you no matter what.
Or are they supposed to?
They're supposed to.

(47:32):
Right.
I mean, if you're comfortable in a relationship, it's super easy to just be like, you know,
just, and you find it, even if it has nothing to do with the reason why you're actually
mad, like why the fuck you leaving your socks on the floor again?
Like how many times have I, you know, when you start an argument over socks?
Because you can.
Yeah.
Because you had a shitty day.
Yeah.

(47:53):
But, you know, a shitty day with a, and if you're in a situation where your child's in
the hospital is a much more shitty day than the average Joe.
I know, at least in my experience and knowing a lot of other cancer families in a situation
like this, especially with medically complex and you don't only have an exact diagnosis,
a lot of the times it can split families apart.

(48:13):
So you know that you guys can get through anything if you guys can survive this, right?
Is that how you feel too?
Cause that's how I felt.
Yeah, I do.
I do, especially now.
I mean, there's, there's been a lot of ups and downs and both of us have worked independently
to try to grow and expand and be the best person we can be, not only for each other,

(48:37):
but for Mila.
And that in and of itself is a journey, you know, in the different ways that we've done
it.
You know, for me, it's spending time being by myself.
I've taken a couple of trips away to write and to write Mila's story.
And, you know, for him, it's in other directions.

(48:58):
We've done counseling, we've done, we've done numerous different things.
So yeah, I do, I feel, I feel very strong right now and I'm glad he is my partner.
Did you ever go through a period where you kind of, at least I know, I know I did for
myself, but did you ever go through a point where you kind of lost your identity for a

(49:20):
while where you were like, I am, I'm just the, the medically complex mom.
Like I'm just a robot.
I'm here to take care of her, do all the things to ensure that she survives.
And I don't even know who I am anymore.
And like, how did you come, you know, to a point where you started to find yourself
again and are you finding yourself again?
Yeah.
I mean, that has probably been one of the hardest things for me.

(49:43):
I mean, even before all this, before we moved and I went into consulting, it was a big decision
for me to do that because I had built this whole network.
I was running these programs and, you know, it was just like, I felt like I was giving
something up.
I have my master's degree.
I'm do, I've accomplished all of this and now I'm, you know, taking steps back or what

(50:06):
I felt like were steps back.
So it's kind of also like retraining my brain to know that things are not linear.
It's not one step to the net.
It's an ABC, you know, that we're going to be jumping around.
It's more like a jungle gym, you know, as far as our identity and our careers.
And at one point, so we've homeschooled Mila since she's been in, gotten out of the hospital

(50:29):
and I didn't homeschool her.
You know, I had tutors and stuff because that's not my field at all.
And I was sitting there with other homeschool moms and they were kind of, they were being
very sweet, you know, but made the comment like, oh, it can be hard at first, but, you
know, just, you know, just keep going on with it.
I was like, no, you don't understand.
Like I'm a lot for Mila.

(50:49):
I'm her nurse.
I'm her mom.
I'm her caregiver.
I am her.
I cannot be her teacher as well.
Right.
You know, I'm taking on way too many roles for her and for myself.
So yeah, I think over the past probably seven months or so, I've started to figure out who

(51:10):
I am again and feel like I am separate of her, but also her.
And, you know, because I was never upset to be Mila's mom.
It was that I didn't feel like Bailey anymore.
Right.
Yeah.
It's hard.
It's really hard.
I can see you kind of tearing up over there a little bit.

(51:33):
It's really hard.
I'm right there with you.
I'm sure Victoria is too.
And then you're kind of mad at yourself because they almost feel selfish, right?
Yes.
Selfish for wanting time to you.
Yes.
Well, and the idea that, you know, people will say children are such blessings, which
they are, and, but when you're doing things like the three of us have, there's a lot of

(51:54):
grieving that goes into that.
Grieving the expectations of what you thought parenthood would be.
Grieving where you thought you would be at this point in your life and grieving like
we've talked about is not also a linear process.
And right when you think you're like, yes, I'm back.
I'm good.
Something happens and spins you out again.

(52:15):
And so it's like you can be upset on so many different levels for so many different things.
Yeah.
And even when you were talking about finding yourself and having your identity kind of
mushed in with your daughters and trying to kind of separate who's Bailey, I think
any mom can identify with that just even on a basic level.

(52:38):
You know, I mean, I felt for years and years, I was just a milking cow for my children.
I, you know, I had four kids in a five year timeframe and I was either pregnant or nursing
all the time.
And I'm like, I'm, who am I?
I am nobody.
This is all I am to them.
And that's okay.
That's it.
Like dad was fun.
The other siblings were fun.

(52:58):
Mom's milk.
That's it.
And it was really hard for a long time, you know, and now that I'm so far out of nursing
my kids, I'm like, oh, I want that back.
I know it's been funny that perspective.
Yeah.
I've been through it so much.
It was always so wonderful.
Like I'm romanticizing everything about it, but man, was it hard?
It was hard and it was stressful.
And I never felt like I was, I couldn't get anybody off of my body.

(53:22):
You know, I just, there was times where I was just like, my skin would crawl.
I just want to be alone.
Like don't touch me.
My poor husband, I'd be like, I've had enough touching today.
Like don't even breathe near me.
Don't look at me.
And don't think about me.
Well, in the past multiple mother's days, the mother's day after me, I got out of the
hospital.

(53:43):
I mean, I just spent the entire mother's day in bed because my mom and I were supposed
to go to lunch and I had a call and say, I simply can't do it.
And I spent the day in bed crying because I didn't feel like a mom.
Yeah.
I felt like Mila's nurse.
I couldn't go to a restaurant and watch all of these other moms get celebrated by their

(54:04):
perfectly healthy children.
And I know that's romanticizing, right?
Like I don't know what that mom has gone through in the past or what she will go through
or what her kids have gone through or what they will go through.
Like I get it.
She probably yelled at them in the car on the way there.
Right.
You know, like I get, you know, and I say this, like your, like your biggest problem
is your biggest problem and stuff.

(54:26):
And so I understand that, but like that just was not the day that I was going to be able
to be rational and stuff.
And then the next year, which was last year, she was in a halo in the hospital and my girlfriend
came from Baltimore to help us and be in the hospital with us and was there over Mother's
Day and we were supposed to go and got up that morning.

(54:48):
I was like, Rain, I can't like, she's like, no problem.
We're going to do whatever you want.
Let's go to the hospital and spend time with meals.
We did that.
And then we went back.
Like I couldn't this year.
Couldn't really as well.
Maybe next, maybe this upcoming year will be better.
I don't know.
I just, yeah, it's just, it's hard with the medical complexities because sometimes your

(55:10):
identity of mom and nurse are feel the same.
Yeah.
Well, that's what a lot of people go through when their husband has some kind of cancer
or their wife is some, you know, and they're now the caregiver or there's a horrible accident.
It's a quadriplegic, right?
And so the spouse has to now take care of this person and no longer are they just the

(55:33):
spouse.
Now they're also nurse.
Now they're also, you know, just caretaker in general.
So those like, you know, lines are kind of mushing together and it becomes very difficult.
And some people can't deal with it.
No, they can't.
And they straight up leave.
Well, it's horrible.
Straight up leave or, you know, hopefully see that they need to hire out.
They need to outsource that nursing care and then only be the spouse.

(55:56):
You know, and, you know, I'm happy for you that you do have a nurse come in and help
it, especially at nighttime so you can have time alone, reading, be with your husband,
something and still know that she's okay.
Yeah, we're really lucky with the nursing staff that we have had and do have like one
of our nurses who we currently have.
We've had almost the entire time meal has been home.
And I mean, she started with us a month after.

(56:19):
And she's absolutely fantastic.
She's like my right hand person.
I don't know what I would do without her.
She's become family.
I trust her immensely, you know, I would leave Mila with her, you know, so we are lucky.
But I mean, I also couldn't be that mom that wasn't involved and stuff.
So of course, every trait change, unless I'm out of town for work or for something, I'm

(56:45):
changing her trait.
My husband and I are changing it.
The nurses there, but we're doing it, you know, like I clean, like I make sure that
she has all of her supplies, all of her medications, like I'm highly involved in all of that because
that's what you're spoilt.
Like, yeah, I was given the responsibility to take care of her.

(57:06):
And you also need to be up to date on everything all the time, right?
Because if you're out of supplies, who's going to order it?
You've got to make sure that we're, you know, I get that.
I feel that mothers are just so amazingly just naturally equipped with that, you know, intuition
and ability to step into that caregiver role, of course, but like, do you ever feel that
maybe like your past experience and like the leadership has really kind of prepared you

(57:31):
for this?
Yes, I've thought about that a lot.
And I was even talking to my mentor over the past couple months and telling her like,
I haven't always operated with grace.
I've lost it sometimes.
Sure.
But it, everything I've learned, like maybe I did all these things to bring me to this

(57:53):
point to be able to navigate the way that we navigate it.
You know, I mean, we have nursing in our house, so I have to navigate a lot of different
personalities who are in our house.
I mean, we never have privacy.
Right.
You think about it.
There's always someone in our home.
And then dealing with the DME company.

(58:13):
We have two DME companies dealing with multiple different doctors, specialists, and their
personalities and their recommendations and stuff.
So really like having to put all that together, even when Mila was going into, in the West
Palm for the halo, I had wrote up an entire thing about her history, where she was at

(58:34):
the moment.
This is how she's fed.
These are the type of nutrients that she gets from vitamins, like that the hospital was
to give her absolute, under no circumstances was to give her any sort of formula or synthetic
vitamins that we would be responsible for all of that.
And I called for, I asked them if they could put together a team meeting because I wanted
to make sure that she was going to be getting a continuity of care, that the care that we

(58:56):
had at home that we were giving her was brought to the hospital and that it was not going to
disrupt her routine because we had been making progress.
And I did not want her to go backwards, especially with having a major surgery.
That's awesome.
You're a badass.
You sure?
You really are.
Oh my God.
Because it's so easy to just be like, okay, they're going to be there to take care of

(59:18):
it and feed her and deal with all of that.
Right.
So many people will just be like, you're the expert, you're the doctor, whatever you
say.
I guess, and I've learned, and again for any doctors listening, this is not a criticism
at all.
I've learned that they know what they know because of their experience.

(59:40):
They're an expert in their field.
They can't venture outside of that.
No, and their field is not in my home taking care of Mila.
Right.
And one of the things that we had a, not really fight with, but so when Mila was discharged,
she had what you call a GJ tube.
So there is the G-tube, but then a J-tube that goes right into the intestine.

(01:00:03):
So it's bypassing the tummy altogether.
And she was on a formula.
So when I got to the place where I could think about things, I was like, wait a second, synthetic
formula full of sugar and soy.
This is not how your body is supposed to process things.
So I started scouring the internet about how do you do a blended diet?

(01:00:24):
And I found this formula, not a formula, but it's something called the real food blend.
And figuring out, can I put it in a J-tube?
And at one point I was just like, we're going to see.
Yeah.
This is maybe trial and error.
And you know, and somebody may think, well, that's a little risky, but a J-tube comes
out a lot.
So that's not an unusual thing.

(01:00:45):
But you know, I mean, I still had a grapple with that.
And when I went to the GI, they're like, well, you can't give her a blended food until she
stops getting sick.
I'm like, she's not going to stop getting sick until I give her blended food.
Your body is not meant to digest this at all.
Right.
Yeah.
So I really transferred her over, you know, over several weeks.

(01:01:06):
And what do you know?
She didn't get sick as often.
And then about, and then we were using that.
And then when I started working with this functional medicine team, Carlos, like you
have to go organic.
That brand is not organic.
And blend, just blend your own food.
So I started just taking exactly the stuff I'd been giving her and blending it myself

(01:01:27):
and sick less and less and less.
You know, the question.
With the, the, the GJ tube, that's what it's called that bypassing the stomach.
What about the acid breakdown in the stomach?
Because you're putting it right into the small intestine.
So it's already bypassing a bodily function to get the food, you know, you just got to

(01:01:48):
be digested in some way.
How does that?
It does in, in our experience, it didn't.
So we would have to vent her belly.
So she'd have all this bile coming out of it because the bile is there to break down
your food.
Right.
So how did the food get broken down?
It just doesn't.
It doesn't.
Well, it's already, you know, whatever you're putting in is kind of already in a broken
down sense.

(01:02:09):
Right.
Because it's blended, right?
But as far as like, because I imagine that the, the function of the bile is not just
to break down the food, but it's also to like allow your small intestine to start absorbing
the nutrients the way that they're supposed to be absorbed.
So I was just curious if there was any kind of something you can add to the food to give
it mimic a breakdown.

(01:02:33):
Not to, not to my knowledge, but if I truly do think if you are giving whole foods in
a blended scenario and you're giving those micronutrients and micro minerals that the
body is going to do it and eat.
But going straight into the small intestine without that, without that bile breakdown
must go straight into her bloodstream like full on.

(01:02:55):
It gets right absorbed.
That's what I mean.
Like it probably absorbs super well.
But unfortunately, so you're the, the intestine, I guess the best way to put it like pulsates.
So the tube easily comes out because it's, and it's super problematic.
We ended up getting rid of it.
Did they tack her small intestine up to the wall of her in order to keep, because I know

(01:03:20):
that's what they do for the G tube.
They tack your stomach up to the wall of your body.
So if it comes out, it's easily you can put it back in and balloon it back out.
Right.
So I was just curious with the, the J tube, if that, how do you get it back in?
So you have to go and they have to do it.
And that's surgically, they can put them under very light anesthesia.
But yeah, that's why the G J isn't like optimal because it is very finicky.

(01:03:45):
Yeah.
So we were happy.
And then in order just to take that out and put a G tube in, that's super easy.
All you do is literally take it out and then put your button in.
Right.
So that's a doctor's visit.
Yeah.
So you guys don't feel comfortable doing that on your own with the G tube?
No, we do everything.
We do everything.
Yeah.
Yeah.
No.

(01:04:06):
They told me that within the first, I think it was the first two weeks or something,
if it came out, I would need to come back in and they would have to put her under like
X-ray to make sure because the stomach was still, still not healed because of her age,
they had put these buttons on the side, almost like, do you remember in school where you
would make like, it was like, you know, those spinning wheel things where you can turn it,

(01:04:27):
had that tack in the center that that's prong kind of tack.
It was like that inside on either side of the G tube for her stomach.
And inside it was like open prongs to get her stomach to then kind of fuse to the wall
of her, you know, the other side of her skin.
And those buttons were so tight, she got massive infections underneath both of them.

(01:04:51):
And they wanted, when we had left Golisano's to go to the rehab center, they were, there
was such an infection because they were probably about the size of a dime on either side.
And they were so infected underneath because they were too small and all the juices are
leaking out of the G tube and just getting stuck under those buttons and you couldn't
clean them.
Just acid.
I know.
And I asked the, they had general surgery come down and take a look and she's like,

(01:05:14):
we're very hesitant to cut these off because they were done by another surgeon and surgeons
don't touch other surgeons work.
And I'm like, with all due respect, she has open gaping sores.
Like she is in so much pain and it's just getting worse because the stomach acid and
we would wrap it.
We'd put those like split gauzes around it to keep it.

(01:05:35):
Oh my God, this poor kid, she still scars from those, those wounds just from those wounds.
The G tube scars, not even that big.
The wounds on the side are huge because of that.
They make it sound like a G tube.
It's like super easy.
They put a G tube in the, for the size of a three year old, the first G tube.
It was so pushed into her stomach when she came out of surgery and they're like, oh,

(01:05:57):
she's just swollen.
And then the nurse, you know, when they give them meds, they have to scan their bracelet.
And I'm talking within an hour after surgery, they had to give her meds and they're scanning
the bracelet and they're looking and she's like, what's going on?
This isn't her bracelet.
It's a bracelet of a three year old little girl.
And I'm thinking because they ended up having to take her back into surgery 48 hours later

(01:06:20):
to give her a bigger stoma for the G tube.
They probably put the wrong G tube size in based off of whatever was reading on the bracelet
when they scanned it.
You know, I was fuming.
I know.
I never said, I never did anything about it.
Never said anything.
I just asked periodically, so how's that investigation going about the wrong bracelet and the wrong

(01:06:43):
G tube and the nursing staff would be like, what do you mean?
Because it's always a new nurse, you know?
And I'm like, it's not in the notes or anything.
Like nobody has any.
She's like, nobody told me about that.
It's not even in like morning rounds that were, you would think that they would let
me know.
Still have no idea what happened.
I thought that was odd.
I think one of the most disappointing things, like kind of going back to the leadership

(01:07:05):
thing is, you know, really been taught to take ownership.
And if you make a mistake, especially in the consulting world, it's like, I wouldn't have
a client, right?
Like I can't just argue with a client that they're wrong all the time and no one would
work with me.
No.
So even when I haven't necessarily done anything wrong, it's not arguing.
It's just figuring out how to work through the problem.
And there has been such a lack of ownership and we've had several different circumstances

(01:07:29):
where I've had the talk, talk with doctors to say what you did was incorrect and not
letting it go.
Not because I wanted to argue with them, but like, no.
We were staying here until we have come to the conclusion that that was not okay so that
there can be a lesson learned with this.

(01:07:49):
Yeah.
Because my daughter, that's my daughter's life that you're talking about.
So I mean, it's just crazy.
And I understand that, you know, if they're sitting there taking all this ownership, it
opens up to liability.
Exactly.
Yeah.
You can't say that was my fault.
You can't say that.
Nobody visited me.
Nobody followed up with me.
I asked multiple times, you know, anytime a new nurse would be on staff, I'm like, oh,

(01:08:13):
hey, and have you, you know, any update?
And everybody was like, what are you talking about?
It's not in the notes.
It's not anywhere.
And eventually we moved away from Galasano's and went to Orlando.
So I just whatever, let it go at this point.
Because they saved her life, right?
Like what am I going to, whatever, I'm being a do.
Yeah.

(01:08:34):
Yeah.
Because at a certain point you just got to let stuff go.
She's fine.
Yeah.
It didn't cause any damage.
You know, let's move on.
Right.
So what does Mila's life look like now?
So Mila is in school.
She goes to this small farm school called Acton Academy.
And they have chickens and docks and cats and stuff.

(01:08:57):
And she goes, I have chickens and backyard cats.
Love it.
She could start a school.
Yeah, you should.
No.
It's super, it's super cute.
So she's able to go Monday, Tuesday, Thursday, Friday because we do different therapies on
Wednesday.
And she is at grade level, if not beyond grade level.

(01:09:20):
And she's so much for those developmental delays.
They told you she was going to have an hour after she was born.
Exactly.
I love this.
With such certainty as well.
I know.
I love this for you and her.
This is fantastic.
She is super smart, super emotionally intelligent.
In our house, we talk about things.
We apologize for things.
We take ownership over things.

(01:09:41):
So the three of us are constantly, somebody's apologizing to somebody at some point during
the day for something they've done.
I love that though.
Yeah.
And because we all make mistakes and we're human and we're all stressed under different
things.
So she's my buddy.
And she, I mean, I just, she's taught me more than any one person or job or position or

(01:10:09):
anything has.
And I, even though I have gone through a grieving process with and still do sometimes, I do
feel incredibly honored to be her mom.
And she's just, she's more, she's more than her medical complexities.
And I always want to make sure when people meet her, talk to her, spend time with her,

(01:10:34):
that that's not what we concentrate on.
That's part of her identity.
I'm not erasing it at all.
But we, you know, she's just Mila too.
And that's what's important.
What does her future look like?
Do you have any idea?
Do they tell you anything to expect as far as continued surgeries and therapies and things
like that?

(01:10:55):
Yeah.
So I mean, our goal is to get her bigger, big enough that she can have the, the magnetic
rods in her back.
You know, I mean, she's only about three feet one inch at seven.
So she's going to be a petite person.
She's completely like proportional and stuff, but she's, you know, I don't know what size
she's going to get in because of having spine surgery at such an early age.

(01:11:18):
Her spine's only going to be able to grow so much.
Um, but, you know, we're just going to keep her keep keeping her healthy and, um, you
know, eventually when she is able to get the magnetic rods, then we can hopefully then
get off of the vent and off of the trach and her G tube will probably be there for a bit
longer just from a nutritional standpoint.

(01:11:40):
And that's okay.
Like that doesn't give her everything that you want to.
That's the beauty of the G tube.
Exactly.
And she's not going to bite my mouth if she wanted to, but that's just not my hurdle at
the moment.
Does she eat by mouth at all?
No, not really.
She expresses interest here and there, but as we've been kind of figuring out some of
these belly issues, she's expressed more interest in hunger.

(01:12:03):
Huh.
Right?
Yeah.
Weird.
The body is like functioning the way it's supposed to function.
So it's starting to do things that it's supposed to be doing.
Right.
So, um,
Even just for taste, like she doesn't, she's not really interested just for taste.
No, but she likes like Parmesan cheese.
So she likes things that do have a taste.
That's a sharp case too for somebody who's not really interested in.

(01:12:23):
Yeah.
I like Parmesan cheese.
I like all cheese.
No kidding.
And I think one of the things that my husband and I talk about a lot is, um, you know, for
so long we've been concentrated on the destination and we forget to enjoy what's happening and
that can be really difficult, especially when you're in midst of crisis, what it feels

(01:12:45):
like all the time.
Um, so, you know, I am trying to breathe a little bit more and concentrate on what's
happening now and instead of worrying about what's going to happen when she's eight or
nine or 10 or 20 and, and stuff.
And, you know, cause things are going to happen, whether they're going to happen and
me worrying about that doesn't stop it.
And so intellectually I get it, but you know, I'm trying to get there emotionally as well.

(01:13:08):
That's the hardest part.
It's like, logically, I know all of these things, but like having the follow through
with my emotions into like a line with my logic is just, there's a gap.
Yes.
Yes.
A lot of the time.
It's like practice, right?
It's like you're retraining yourself and, um, between all the things that you thought

(01:13:28):
were going to happen, you know, one of the hardest things for me is just people feeling
bad for us.
You know, social situations can be very awkward for me.
I'm great with business and I talk about Mila.
I'm very authentic about our journey and stuff and in personal situations, sometimes it's
a little harder because they feel people like doing that head nod and like, I'm so sorry.

(01:13:49):
Yeah.
Yeah.
Like where our podcast name came from.
Like I don't need that.
Like I appreciate it.
I'm not taking away your compassion, you know, but like don't feel bad for us because, but
you feeling bad for us and for Mila, you're saying there's something wrong with her and
there's nothing wrong with her.
Yeah.

(01:14:09):
Yeah.
Yeah.
Man.
Yeah.
I've done that too though, right?
We all have when somebody, you know, tells you something that's hard and you're just
like, Oh my God, I'm so sorry because you don't understand what it's like to go through
that and that's tough.
But as the person going through it, that's why we came up with the name of this podcast

(01:14:30):
really is kind of like, that's all we have heard.
Oh my God.
So, you know, it's like, if somebody says that to me one more time.
But then I say it.
I catch myself saying it a lot, especially now.
Don't you feel like when people say stuff like that to you, it's almost like then you

(01:14:50):
try to make them feel better.
Yes.
I'm feeling bad for you.
You know, you're like, I can't either.
This is what happened.
I kind of had to.
I don't know how I did it.
I just did.
You just do.
Yeah.
I kind of got into the point where I just do that.
Yeah.
And then that's awkward for people to like silences.
Right.
You just sit there and twiddle your thumbs.
Like what did I say?

(01:15:11):
Yeah, what do I do?
I don't know.
Thanks.
And just pat them on the head.
Right.
Like make it even more awkward.
Yeah.
Yeah.
Did they say anything about like, well, her ability to have children when she's older
be affected or anything like that?
You know, I have no idea.
I'd imagine her size would maybe come into part of that.

(01:15:33):
But I mean, again, like who knows?
We just, no one knows anything.
Well, we have a mutual friend who's also an employee of Victoria's who had major spine
surgery and she has rods in her back and she actually was able to have two kids.
But she has golden heart syndrome.
So that's where the deafness comes from.
She's had 50 jaw surgeries.
Oh my gosh.
All of these things, right?

(01:15:54):
She did.
I don't think she had kyphosis.
It was full scoliosis.
So she had a full spine and now I think at 15 she got the rod put in.
So she's of average height because she was able to grow to a certain age.
But she's a full functioning adult with children.
But man, she's the hardest worker.
She busts her ass every day.

(01:16:17):
She's funny as shit too.
Doesn't complain ever.
She's awesome.
Yeah, funniest.
She's so funny.
Camila doesn't, she doesn't complain either.
Everything that she goes through, like all her surgeries that she goes through and the
thing that she worries the most is that they'll put too much tape around the IV.
Right.
And she's like, your back was just like, just like gone into with a knife.

(01:16:40):
And she literally went to the head of anesthesiologist, the director of anesthesiology for the entire
hospital and went out to her and said, can you please make sure that they cut and put
the littlest amount of tape around my IV is possible.
And she's like, we sure will.
Why does she only want a little?
She doesn't like when they have to take it off and it hurts.

(01:17:01):
Oh my God.
But when to the head, I love this.
And then every per every doctor who came in, like whether it was a nurse or a different
doctor, you know, cause multiple doctors on the surgery and stuff.
She's like, Hey, I just want to make, she literally said, I want to make sure everyone's
on the same page.
She's like you.
She's a leader.
Apple does not fall far from the tree.

(01:17:22):
I want to make sure everybody's on the same page.
And then she told everybody just a little bit amount.
I'm just like, Oh my God.
Because it hurts.
Meanwhile, she's getting spine surgery.
Correct.
Right.
That's hilarious.
Cute.
What a sweetie.
I love that.
I love that too.
It's kind of like my daughter's got this personality that's going to be so bad ass when she's older.

(01:17:47):
So bad when she's older.
She doesn't take shit from anybody, but she'll say things be like, Hey, I don't appreciate
that.
Or Hey, you're being really rude.
You know, and she definitely can be rude too.
Don't get me wrong.
Oh, yeah.
I'm going to get you out.
And it's really awesome, but she needs to polish it.
Like we got to like, you know, really polish that.

(01:18:08):
Yeah.
That personality.
It becomes clever.
Yeah.
But just, you know, you get what you want with how you say things.
It's not what you're saying.
You can get whatever you can get whatever you want with how you say it.
Yeah.
I tell them all the time that you touch more bees with honey.
So it doesn't matter what you say, you know, you can really shape your life with how you

(01:18:29):
conduct yourself and how you say things and still get your point across, still draw boundaries,
et cetera, et cetera.
Yeah.
Yeah.
For sure.
So earlier you had mentioned, and you were trying to like, you know, kind of finding your
identity again, and you kind of like would leave and like go out of town.
You mentioned writing a book.
So can you tell us a little more about the book and what that's all about, please?

(01:18:51):
Yes.
So in order to get ready for Mela's spine surgery, because she was going to be impatient.
And again, I had to figure out how to work through that trauma.
And, you know, I had been seeing a counselor, so it wasn't like I wasn't actively trying,
but I needed to have space to open that up and leave it open.

(01:19:11):
And that couldn't be, you know, then having to go pick up Mela or go take her someplace,
you know, I needed a space where I could cry and nap and think and just kind of get lost
in all of it.
So I went away.
My husband went away as well.
We went away at separate times.
And I just started writing.
I really didn't have much of a plan for that, but I started writing and I just started writing

(01:19:36):
her story and actually our story.
So it really concentrates on her and her child.
So it's in third person that felt an easier way to express myself.
And but it's about us.
It's really not about anybody else.
You know, other people who kind of come into it, like my husband, or I talk about like

(01:20:00):
a situation with my mom and my dad during certain hospital experiences and my niece
being there, but they're not primary characters at all.
So and my really, my thought was just to kind of create this archive for Mela.
And then as I started writing it, I started to, I was very authentic with how I felt,

(01:20:24):
how angry I was, how the grieving the expectations, that how hard it is for us as women to express
that because we're supposed to be thankful for the things that were given.
And in seven, and I started to think, well, maybe this would help other parents who have
children with medical complexities and not feel so alone because that's ultimately how
I felt.

(01:20:45):
I, you know, there's no support group for what we go through with Mela.
You know, and, and I just, I felt alone all the time and a book, it doesn't fix anything
for people, but it at least is, it could be a resource for people.
And so I guess I'm probably about 70% done.

(01:21:09):
I mean, I think it's very beautiful because it's really shining on the mom, me and her
ability to be able to process all of this stuff, again, being very authentic, but also
about just how beautiful and strong Mela is.
And you know, kind of as we talked about before, we forget a lot of things, even though we're

(01:21:30):
going through all these crazy traumas, we think, I'm always going to remember this and
then you don't.
So, you know, another way just to kind of document, so Mela knows what she's gone through and
what she's had to endure.
She can look back at this and be like, my gosh, my mom was awesome because there's going
to be a point with which she's not going to appreciate you.

(01:21:52):
And that's natural and that's normal.
And if, you know, she doesn't go through that, I think everybody be like, something's going
on, right?
Because those teenage years are tough.
Well, and I'm hoping that you're supposed to try you because that's development.
And I'm hoping that we can kind of start to put more reasonable expectations or more to

(01:22:15):
be kinder to mothers and, you know, especially moms who are going through things.
It doesn't always have to be medically complex, but you know, that they, this idea that they
have to be a superwoman and that's tired.
It's so annoying.
It's exhausting.
And like one of the ways I describe to people when we've been continuously going through
stuff, I'm like, it is almost like I'm in a boxing ring and I'm being punched and I,

(01:22:39):
but I don't have respite in between the rounds.
So eventually I'm not going to get up again guys.
Like that's just the reality because I'm not magic.
And we women moms put themselves second, third, fourth.
And I hope this could also talking about like self care and stuff can help promote that

(01:23:02):
not just within moms themselves, but their communities to really support that for them.
You have such a wonderful way with words.
I know I told you that before, like your whole application.
I was like, man, this girl really knows how to write well.
And then when you said you're writing a book, I'm like, girl figure.
I'm like, I'm so glad because man, you're awesome.
I'm flushing.
Yeah, a little bit.

(01:23:24):
So when the book is out, you're going to come back in.
Yeah.
Yeah.
We're going to promote this book.
Yes.
We're going to take photos of you with it and put it on our website.
She's a photographer too.
Yeah.
She could do your head shots.
Yeah.
Well, one, I need head shots for sure.
And then I would really like to do family pictures.
I haven't done family pictures in a while.
So what are her interests?

(01:23:45):
What is she like into right now?
She loves unicorns.
She loves math.
She's really good with math, loves games.
She's very good with games like dominoes.
She beats everyone.
Yeah.
And then she got up on her cash register, they were in the office.

(01:24:07):
And we went on that Christmas rode, together with our relatives.
To work side a side with grandma, we've had to get this.
I think she was, she was way acting crazy, really great.
She was just like, oh, you're gonna get this.
So like, yeah.
So last day I was at all going back home.
I was in school, and then we got back to my hospital.
So that day, there were those three of them left, right, four kids.

(01:24:28):
little thing every Wednesday night.
There's a music guy that'll come around once in a while
and sing songs with them.
There's like a volunteer reading,
there's a volunteer dog and then they have,
where the kids can read books
or somebody can read books to the dog.
All of those things, right?
So, but there's so much time in between.

(01:24:49):
We played so many games and it was awesome.
She's, we play this game called Blink.
You know, I had to like reteacher how to play it
and she was really slow so of course I would go slow too
because I'm not gonna like, come on.
I'm gonna let her win.
I mean, look what we've just been through.
But she started to honestly win.

(01:25:12):
And so then she's like, mom,
I think you're trying to pretend to beat me again.
Don't try.
I'm like, listen, I'm not trying now.
I'm trying my hardest.
I'm really, really, she loved games.
She still loves games.
Tell us when you have any goals in mind
when you expect to be done with your book.
I hope to be done in the next four to six months.

(01:25:33):
Awesome.
That is my goal.
Well, we would love to have you back to talk about the book
and to kind of give us an update
and give you an opportunity to promote it as well.
So if anybody wants to learn a little more
about your journey and follow Mila, where can they find you?
We are on, I do an IG page for her.
So it's Mila, Sophia and me.
So M-I-L-A and then S-O-F-I-A

(01:25:56):
and me and I'm not posting necessarily all the time,
but I just post about our journey
and the things that she goes through
and hopefully we can be a support for other families.
That's awesome.
That's awesome.
And then if there's other mothers out there
that really connect to your story,
aside from just the Instagram account,
is there another method that anybody can contact you

(01:26:18):
if they wanted to kind of pick your brain
or just have some motivation before the book comes out?
Anything like that?
Yeah, absolutely.
My email is baile-p-r-e-y, period,
sausage, S-U-S-I-C at Gmail.
So I'm always here for other parents, moms,
I would say a couple of years ago,

(01:26:39):
I didn't have that capacity at all.
I was just surviving and as we've gone through this
and been able to do some healing and always continue to be,
I'm so happy to help or assist and help,
but like assist other families and other parents.
That's great.
And what about business consulting?

(01:26:59):
What would, if somebody wants to reach out to you for that?
Yeah, so I do leadership, so work with organizations
and we'll develop women's leadership programs,
leadership programs in general,
but really kind of the niche with my partner
is with women's leadership,
we really feel like empowering women,

(01:27:20):
especially at an executive level,
is so important for capacity building in communities.
That's fantastic, I love that.
Yeah, so and we're, I'm currently working,
we're kind of seeing where this will go,
but possibly putting together a blended food line
for tube fed people, tube fed individuals,

(01:27:41):
so children and adults,
and this would be something that is organic
and fortified with natural minerals and nutrients
instead of synthetic vitamins.
So there's something like that on the market right now,
and as a person who blends themselves,
it can be super time consuming.
So developing something that could at least be

(01:28:02):
supplementary to what people do,
we're working through it right now and stuff,
so kind of see where that goes,
but it would be there to help support
the most vulnerable population of our medical community.
We're feeding them the worst foods,

(01:28:23):
and they're the most vulnerable.
When my son was first inpatient,
right after he was diagnosed,
we were stuck in the hospital for like about two weeks,
it was actually 12 days,
because he had a staph infection in addition to the cancer,
and he was severely anemic at the time,
so they kept him a little longer than they normally would
to address the staph infection,
but the kid didn't eat.
Like you were talking about the,

(01:28:44):
they say, well, we'll eat when they're hungry,
when you're a mother and you're facing
that you're child won't eat,
you're like, something has to be done now.
And I remember asking the oncologist,
I need you to send me a dietician nutritionist,
whoever you have on staff send them here now,
I gotta figure out what to do for this kid,
because I was expecting maybe he might need a G tube
or something like that,
and what was the one thing that she said,

(01:29:04):
and the only thing that she said was pediasher,
and I wanted to punch her in the face,
and I'm like, you went to school for how many years,
and the only thing that you can recommend
is to give him pediasher, get out of my sight, goodbye.
And I know you mentioned it like at one point,
your son was like only eating pizza or something,
and you were like, whatever, I don't care.
After we got home, they told me once all the steroids

(01:29:28):
kick in and his appetite comes back,
he will latch on to a particular food,
like it's his last meal, and they said it could be,
they will literally pick one meal, and that would be it,
and it was Papa John's cheese pizza,
washed out with the glass of milk,
and that is all he ate for like a whole month.
And the garlic oil.
And with the garlic sauce,
and it was funny because one of the Papa John's

(01:29:48):
actually donated a huge gallon thing of garlic sauce,
they were like, just take it.
So cute.
So cute.
It's just so nice.
But in those situations, you're so happy
to give them whatever they want,
but I also remember the nutritionist coming in,
going in calorie is a calorie, and like now,
I've heard that too.
Now knowing what I know, I'm like, no,
giving them ice cream and cool whip is not.

(01:30:10):
Right.
Well, in the hospital, they were coming in
and giving him pancakes, you know,
with their disgusting, probably margarine, right?
Not real butter with margarine,
and it's just like a frozen.
With a fake syrup.
Fake syrup, probably all corn syrup
that they're giving him.
And when he took a bite of a pancake, I cried.
Because I just wanted him to, like at that point
in my mind, a calorie was a calorie

(01:30:32):
because he wasn't eating anything.
You know, and before that.
My dad had pudding in Gatorade.
I was so excited.
Take that die.
I don't care at this point.
You're eating by mouth.
You're actually interested in putting something
in your mouth.
I love that.
Are you familiar?
I think it's Kate's Foods or Kate's.
Kate's Farm.
Kate's Farm, yeah.
So they have an organic line,

(01:30:53):
but they don't fortify with natural supplements.
So doing all the market research,
there's a, there are a couple out there,
but either they're not organic
or they don't have good fortification.
I love that you are taking this
and seeing that there's this need.
I really hope that you're able to do something with it.

(01:31:14):
That's amazing.
It was, I did not go into it thinking like this.
It was actually doing all of this
and working with her team.
And Carlos, like you should create something.
I'm like, no, I have a lot going on right now.
You're a time.
You're a time.
Yeah, and she kind of like kept talking to me about it.
And then the more I thought about it,
the more I realized that, you know,
we are on a preface, like when it comes to a food revolution,

(01:31:38):
like things are gonna be changing
with the way that we eat.
And it's not fair that people who don't have the time
or the resources or the knowledge
are then can't give their kids something good too.
And that needs to change for them.
You have been awesome.
Thank you.
Thank you so much for coming into the studio
and telling us about Mila's journey.

(01:32:00):
And we wish her all the best.
And we hope that we can meet her someday.
Yes.
Thank you both for having me.
It feels very, very honored to be here in a share.
We feel honored that you're here.
Yes.
You're so smart.
No.
We really enjoyed this time with you.
Yeah.
Thank you.
Thank you for listening.
You can find us at icantevenimagined.com.

(01:32:21):
And you can also find our social pages on Instagram
at icai underscore podcast or on Facebook
at icantevenimaginedashapodcastformoms.
Have a great day.
Thank you.
Bye.
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Episode 12: Navigating Medical Complexity – Mila's Story of Strength, Advocacy, and Perseverance

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Episode 12: Navigating Medical Complexity – Mila's Story of Strength, Advocacy, and Perseverance