April 21, 2025 • 63 mins
Imagine hearing that your unborn child is missing a bone in their leg. Then imagine doctors telling you the only option is amputation. This is where Courtney Brown's story begins—a testament to the power of maternal intuition, faith, and the transformative impact of asking for a second opinion.
Courtney takes us through the emotional rollercoaster that began at her 20-week ultrasound when technicians discovered her daughter Kinley was missing her right fibula bone. With minimal guidance from her medical team, she embarked on her own research journey and discovered the condition was called fibular hemimelia. After Kinley's birth, multiple consultations with specialists led to the same conclusion: amputation before her first steps.
But six days before the scheduled surgery, Courtney couldn't ignore the persistent voice urging her to seek another perspective. Her eleventh-hour email to Dr. Paley, a specialist she'd only read about online, changed everything with his response: "I can fully correct Kinley's leg so she can run, jump, walk and play."
What unfolds is a beautiful narrative of faith, medical innovation, and a mother's unwavering advocacy. We explore the emotional challenges of handing a 19-month-old over for complex surgeries, the physical toll of recovery, and the incredible milestone of watching Kinley wear her first pair of shoes on both feet. Now preparing for her third of four planned surgeries, Kinley is thriving as an active second-grader involved in theater, art, and learning guitar.
Beyond the medical journey, Courtney offers powerful insights for anyone navigating healthcare challenges: trust your gut, don't be afraid to ask hard questions, connect with others walking similar paths, and remember that primary care physicians can be invaluable allies in coordinating complex care.
Have questions about medicine, mental health, nutrition, relationships or want to share your story? Reach out to trishajamisoncoaching@gmail.com and join our community of curious, informed listeners who keep asking the right questions.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:08):
Hello and welcome to the Q&A Files, the ultimate
health and wellness playground.
I'm your host, tricia Jamieson,a board-certified functional
nutritionist and lifestylepractitioner, ready to lead you
through a world of healthdiscoveries.
Here we dive into a tapestry ofdisease prevention, to
nutrition, exercise, mentalhealth and building strong
relationships, all spiced withdiverse perspectives.
(00:29):
It's not just a podcast, it's acelebration of health, packed
with insights and a twist of fun.
Welcome aboard the Q&A Files,where your questions ignite our
vibrant discussions and lead toa brighter you.
Welcome, wellness warriors, toanother episode of the Q&A Files
.
I'm your host, trisha Jameson,a functional nutritionist and
lifestyle practitioner and alife coach, and, as always, I'm
(00:52):
joined by my co-host and husband, dr Jeff Jameson, a
board-certified family physician.
Hi everybody, yeah, so everyweek on the show we bring you
the stories that move us, teachus and help us to rethink what
it means to be well from theinside out, and today we're
sitting down with someone whohas walked one of the hardest
(01:14):
and most meaningful journeys aparent can face.
I met Courtney Brown in Tony'sgroup, and she's come to several
of my classes, and so we'vebeen able to have a lot of
discussion time with herself andwith Jeff, and we have just
really had so much fun gettingto know Courtney.
(01:36):
Courtney is a dynamic,accomplished leader with more
than two decades of experiencein executive leadership,
healthcare administration andpublic health research.
She works in healthcaresupporting leadership in a
national organization thatfocuses on family medicine,
where she plays a critical rolein strategic initiatives and
(01:57):
national healthcarecollaborations across the US and
Canada.
Her career includes leadinglarge-scale research efforts,
coordinating NIH and CDC-fundedpublic health programs and
managing executive operationswith grace and heart.
But beyond all of that,courtney is a mother, a creator,
a plant and food lover andsomeone who brings faith and
(02:21):
strength into every part of herlife.
She's a mom to three amazingdaughters, two lovable for
babies, and she lights up whenshe's in the kitchen creating
new recipes, something we bothlove.
So today's conversation is verypersonal, it's powerful and it's
one that we will all resonatedeeply with because so many of
(02:42):
you are mothers.
But before we dive intoCourtney's story, let's take a
moment to celebrate.
It's a tradition here on theQ&A Files and with my clients.
It's a way for us to pause andrecognize what's going well in
our life, big or small, andtoday we get to include Courtney
in this journey with us, onthis part of our show.
(03:04):
So what is something that you,jeff and Courtney, would like to
share, what celebration you'dlike to share today?
Speaker 2 (03:12):
Okay, I've got one real quick.
It is a beautiful day here inSpokane, washington.
It's 75 degrees clear skies,and I got up in them with the
airplane and did some flyingaround today, so that was really
fun, and I'm excited to saythat everything landed perfectly
too.
Speaker 1 (03:33):
That's always a good thing.
Love hearing that.
Thank you, Courtney.
Do you have a celebration for?
Speaker 3 (03:40):
us?
I do, and first of all I wantto say thank you for having me
and thank you for that very kindintroduction.
A celebration for me would besomething that just happened on
Saturday of this past weekend,and that is, my daughter, who I
will talk about in a moment, wasin a pageant called the Pageant
of Hope and she won a reallyspecial title and it was a
(04:02):
wonderful opportunity to justsee these kids of all abilities
and special needs just reallyshine on stage and it was a lot
of fun.
As a mom I was really proud ofthat.
Speaker 2 (04:11):
Oh, that's really fun .
Speaker 1 (04:13):
That is so fun.
I'm so glad you shared that.
What a great start to thethings that we're going to share
about your story.
And so my celebration is justkind of what Jeff said We've
been in the 40s, 50s, and so mycelebration is just kind of what
Jeff said it's we've been inthe like forties, fifties, and
so today, with 55, what weskipped right past the fifties.
(04:33):
Yeah, we did.
We haven't had many fifties.
Speaker 2 (04:36):
Yeah, it's been forties, thirties, forties,
thirties, forties and then boom.
Speaker 1 (04:40):
And then it's 75.
And it you know, I was wearingshorts.
Today.
I went for two walks.
I'm like I'm enjoying thisweather to the fullest, because
tomorrow is supposed to be inthe 50s and rainy, and so I just
thoroughly enjoyed thisbeautiful, beautiful day.
This is the beginning of ourspring, but sometimes it teases
(05:01):
us because what we like to saythat every 15 minutes in Spokane
the weather changes.
So if you don't like what youhave outside, just wait 15
minutes, because you'll usuallyget something else.
Speaker 2 (05:12):
So true.
Speaker 1 (05:13):
Anyway, thank you both of you for sharing your
celebrations.
Okay, so, courtney, you'velived in many different chapters
in your life executiveleadership, public health,
family medicine, advocacy butnothing prepares you for the
chapter titled my Child has aRare Diagnosis.
So let's start with Kinley'sstory.
(05:35):
You didn't find out after birth.
You actually learned somethingwasn't right during your
pregnancy, and there's somethingabout hearing that kind of news
while you're still carryingyour baby.
That is supposed to be such atender time.
What kind of information wereyou given?
Did they explain everythingclearly, or was it a swirl of
(05:57):
uncertainty?
Speaker 3 (05:57):
You're so right.
It's supposed to be a verytender and joyful time.
But my world completely changedthe day I was getting my
ultrasound.
I was 20 weeks pregnant andtypically that's when mothers
get the gender ultrasound.
They do the anatomy scan andthings like that.
So we had cheated a little bitand we had already known she was
(06:20):
going to be a girl because wehad some genetic testing.
So we weren't really there tofind out if she was going to be
a boy or girl.
We were really there to justfind out the anatomy and if it
was normal.
So we found out in that scanthat she was missing a right
fibula bone and it was justmissing.
And they didn't really knowwhat the diagnosis was.
They just said they couldn'tsee it and that the tibia bone
(06:43):
that was there was measuringsmaller than the unaffected leg.
Speaker 2 (06:48):
Okay, and for people, first of all, the fibula is the
bone that is on the outside ofthe leg and the tibia bone is on
the inside of the leg.
The tibia is the one thatcarries most of the weight and
the fibula is an important bonefor stability of the lower leg.
Speaker 3 (07:05):
See, I wish I even had Jeff there.
I didn't have anyone there toeven explain those things to me
that day.
It was just silence.
I don't see a bone, don't see afibula bone, and then I was
just.
I left and went home andstarted Googling and researching
it.
Speaker 1 (07:23):
Yeah, okay, so can you take us into the moment when
everything shifted?
What were you feeling and howdid you begin to navigate what
came next?
Speaker 3 (07:33):
So everything shifted that day very rapidly.
It became I'm now going tobecome an expert in whatever
this condition is and I'mstarting from scratch.
So I just Googled the wordsmissing fibula bone.
I remember distinctly being ledto a website that specialized
(07:56):
in kids with missing limbs andit was actually an orthopedic
institute out of state locatedin Florida.
And as soon as I clicked onthat I saw children with metal
devices on their legs that I hadnever seen before and they look
like they had something ontheir leg.
(08:18):
To me it was very scary andbarbaric looking at first.
I had never seen any kind oflimb lengthening on a child, so
that frightened me and scared meand I had no idea what I was
looking at.
First, I had never seen anykind of limb lengthening on a
child, so that frightened me andscared me and I had no idea
what I was looking at.
I had never heard of limbdifferences, I've never even
heard of missing fibula bones,and so then I got on that
webpage a lot of education.
(08:38):
It actually set the title ofthe diagnosis for the first time
.
So it wasn't my OBGYN thatdiagnosed it, it was actually.
I found this website and sortof made an educated guess that
this was called fibularhemomelia.
Speaker 1 (08:53):
So what did your OBGYN tell you?
They?
Speaker 3 (08:57):
actually said it looked like clubfoot and they
told me that we did have aShriners Orthopedic Institute in
our hometown and that they justreferred me to see them as soon
as she was born.
But they could not give me adiagnosis.
She said she had never seenanything like it before but said
on the ultrasound her foot wasin a right, 90 degree right
(09:19):
angle and they just assumed itwas clubfoot.
But just based on what I hadread on that orthopedic website
about limb differences, I readthat it was much more than
clubfoot.
Speaker 1 (09:30):
Okay, now I want to talk about the incredible
turning point when you found DrPaley.
This wasn't just a casualGoogle search.
There was prayer, intuition,persistence.
How did you find him, and whatmade you decide to reach out to
him personally?
Speaker 3 (09:47):
Well, this picks up right after getting that
diagnosis of maybe a clubfoot ora missing fibula bone.
You know, when I did Google andfind the Orthopedic and Spine
Institute, that was Dr Paley'sOrthopedic and Spine Institute,
so I recalled that he was a goodsource.
So I recalled that he was agood source.
I think I read during my20-week ultrasound that he was
(10:08):
the top expert in the ofpublications and he had a lot of
good diagrams and pictures andwhat I appreciated about is he
(10:31):
had patient stories so I couldclick on pictures and read other
kids.
So the story really took amajor turn when I had this
knowledge from pregnancy.
But Kenley was born and I tookher to Shriners, like my OBGYN
had referred me to.
She said I really recommend yougoing to Shriners and she said
(10:53):
we have top specialists thereand there's a specialist there
who's been treating kids withher condition.
And so when she was threemonths old I took her to
Shriners and at six months old Itook her back and at nine
months old.
So I went three different timesand we saw the same orthopedic
surgeon and during all three ofthose visits, which were very
(11:16):
emotionally hard to sit throughand listen, we were told her dad
and I were told all three timesthat she had such a severe case
of fibular hemimelia that wehad to amputate and that we
should amputate, and that limblengthening really wasn't even
an option to discuss, that itwould cause her just a really
(11:37):
hard childhood, and that therewas no guarantee she'd even walk
with those surgeries.
So they were really encouragingme let's hurry and get this
scheduled, because we want toamputate before she walks.
Speaker 2 (11:48):
That sounds really discouraging.
I just wondered how did youfeel when you had that decision
thrust upon you.
Speaker 3 (11:57):
It was like someone punches you in the gut, it just
yes.
Speaker 1 (12:01):
Before you get to that, I just hold on to that
thought.
So now you didn't know about DrPaley until later, so it wasn't
in when you were still pregnant.
So it was like nine months whenthey were telling you Okay, yes
, so sorry, no, please sharewhat you definitely asked.
Speaker 3 (12:24):
I have never talked to Dr Paley or even reached out.
I just used his website as mysource of education and
knowledge about this conditionshe might have when I was
pregnant.
I didn't reach out to him untila year later when.
I had scheduled the amputationsurgery.
So after those threeappointments at Shriners and
(12:45):
consulting with this orthopedicsurgeon and looking at x-rays
three different times, Iremember at nine months of age
she handed me a box of tissuesbecause I was sobbing at this
decision and, to answer Jeff'squestion, it really felt like
someone's punching me in the gut, like my heart just sank when
they just said you know, this isyour only option for her to
have you know, a fulfilled,successful life and she's not
(13:09):
going to be able to really walkand if you, she didn't.
Really, I felt like thephysician was one side of she
was really pushing andadvocating for amputation,
rather than giving me all thefacts to for me to make the best
informed decision.
I felt like she was reallytrying to persuade me and so I
listened to her.
It is, and I looked at her asan expert in the field and so I
(13:33):
did schedule it.
I thought, well, I've been toyou three different times, the
information has not changed.
I trust you as a healthcareprofessional.
I'm going to go ahead andschedule it.
And so I scheduled theamputation surgery for April
30th of 2018.
And Kenley was 10 months old andthey said as soon as she starts
pulling up and we all have hadthose moments, those milestones,
(13:55):
when our infants are learningto cruise and they pull up on
the couch or the sofa table, andthat's when you celebrate.
Well, I was dreading that daybecause I knew that's the day I
have to call Shriners and wehave to schedule the amputation.
So it was like I want you togrow, but I don't want you to
grow up, because then we have todo this hard thing that's gonna
really change.
(14:16):
So it was hard, but I did it.
I didn't think there wasanother option at that point.
Speaker 2 (14:21):
Did they give you any rationale about why, at that
particular time, when shestarted to cruise, that it was
the time to do an amputation?
Why not before that, or why notafter that?
Speaker 3 (14:33):
That's a very good question.
They typically like to doamputations for kids with limb
differences before they taketheir first steps.
The philosophy behind that isthat when they do take their
first step it'll be with theirprosthetic leg.
And those kids thrive.
They start walking within dayswith the leg and it's just
becomes natural because theydon't know any different.
(14:55):
And I knew deep down in my heart, you know, with Kenley having a
prosthetic leg she was going tohave a wonderful, successful
life.
I even met with an amazingamputee who was so wonderful and
just gracious with her time tocome over to our home and teach
us about amputee and prostheticlegs before I met Dr Paley.
(15:15):
So I knew that if that wasGod's plan for her life and we
were going to go in that routeof amputation, we were going to
make that work for her.
But I couldn't ignore thislittle voice inside me that kept
just whispering to me andnudging me to listen to my
instincts and get a secondopinion.
So I scheduled the amputationsurgery for April 30th and six
(15:41):
days before the amputationsurgery that little voice got
stronger and stronger and itkept saying second opinion
because I had not, you know,been outside of the Shriners
Hospital facility.
I had not talked to any otherexperts, I had just Googled Dr
Paley.
I just read some things on hiswebsite.
I've not reached out to anyone.
(16:02):
So I decided that I was runningout of time.
It was six days before theamputation, so I just Googled Dr
Paley's email address again,went to the same website that
was my source of knowledge forthat year before when I was
pregnant, and luckily he had hisemail on there and I sat there
and I poured my heart out.
Speaker 1 (16:23):
Yeah, I was just saying.
So what did that first exchangefeel like?
Did it give you immediate hope,or were there still doubts and
unknowns you had to hold onto atthe same time?
Speaker 3 (16:33):
Wow, that's such a good question, tricia, because I
truly feel that April, april30th, will always be etched in
my heart forever as a specialday that changed the trajectory
of Kenley's life forever andchanged our lives as her parents
forever.
It was like that first emailsentence that said Courtney,
(16:54):
comma, I can fully correctKenley's leg so she can run,
jump, walk and play.
That will.
I'll never forget the impactthat had.
When I read that that day it wasthe sense of peace came over me
(17:15):
, that I trusted my instincts,but also that I said a prayer
before I wrote the email andI've said God, if this is your
will for her life, to have theamputation, I will show up
Monday and do that as planned.
But if it's not, I pray overthis email that you know Dr
Paley will close the door for meand that'll give me
confirmation to do theamputation, or maybe he'll see
something and that'll open a newdoor for another avenue,
(17:35):
another treatment plan.
So I was just willing to trustGod that this second opinion was
going to either, you know,confirm that I was doing the
right thing or give me anotheroption.
And that's what it exactly did.
It just truly gave me anotheroption that I had not even
thought about or even thoughtwas possible.
So Dr Haley says he makes theimpossible possible and he does.
Speaker 2 (17:59):
When you sent that original email?
Did you send images with thatemail of her x-rays or how did
you get his attention?
Speaker 3 (18:08):
Yes, Jeff, you always ask the great questions as a
physician because you alwaysthink about the physician's
perspective.
And I thought about that.
To get his attention I need toattach the x-rays.
So I did that.
I put all the x-rays fromShriners in that email and I
think that's what actuallyhelped me get a quicker response
.
Yes, because he was able tolook at those.
(18:30):
And in that same response emailback he said I've looked at the
x-rays, I can do this.
She actually has five toes andI have operated on kids with two
and three toes.
Speaker 1 (18:43):
So why was that actually so?
Why was that so important?
Speaker 3 (18:48):
So he was saying so he can do anything, even with
kids with a few toes two, three,four, five.
But he was saying that he evenput in the email I have had
great outcomes with kids withtwo to three toes, but now that
Kenley has all five, he saidjust imagine what I could do
with a perfectly formed foot.
(19:08):
So, another thing about fibularhemimelia is that it doesn't
just mean the bone is missingand the leg is shorter than the
unaffected leg.
It also causes deformities inthe foot and the ankle and
sometimes the knee.
So Kenley's foot was aperfectly formed foot with all
five toes.
So he was encouraging me not toamputate because he said I can
(19:29):
work with that.
It gives me a lot more to workwith.
Speaker 1 (19:32):
Oh, I love this.
So we often talk about thesemoments as fate or divine
intervention, and I know faithplays a big part in your life.
So, looking back, do you seethat moment of finding Dr Paley
as one of those amazingspiritual nudges that you were
looking for?
Speaker 3 (19:51):
Absolutely.
That's the only way I candescribe it.
It can't be described any otherway.
But it was God's voice and Hisfootprints are all over this
journey and he keeps showing upand showing me how he's here and
how he's with us.
And I pray that I will keepwalking through the doors, lord,
(20:13):
as long as you keep openingthem, I'll keep walking through
and he keeps opening those doors.
He made it possible, he workedout so many obstacles to get us
to Dr Paley's Institute, but itwas truly taking a moment to
listen and to trust your gut andtrust your faith, because
there's a lot of uncertaintiesin this medical journey.
(20:35):
You know God didn't promisethat it would be easy, but he
did promise it would be worth it, and it's the fear of the
unknown I love that.
Speaker 1 (20:44):
I love that.
So, as things move forward withDr Paley and his team, what was
the decision-making processlike leading up to the surgery
and how did you prepare Kinleyand yourself for what was ahead
of you both?
Speaker 3 (20:57):
Well, this journey is definitely not a sprint, it's a
marathon and he's very upfrontthat this is not a one-time done
.
This is a long-term processthat will yield great outcomes
in the end.
But in the beginning you'regoing to have to endure three to
four major surgeries.
So we knew the timeline wasgoing to be operations at age
(21:19):
two, four, eight and 12.
And he was very upfront andvery transparent about that at
that first initial consultation.
That laid out the timeline forus and we were able to make the
best informed decision based onwhat we thought was best for
Kenley.
Kids with this condition.
It's not always the best thingto lengthen their limbs.
(21:41):
It may be best for them toamputate, because each child's
case severity type there's alsofour different types that Paley
classifies on his website.
So you have to take that inconsideration too, that it's
just not the same answer forevery child.
So when we were presented forher case, for her severity, for
(22:02):
her special type of thiscondition, this is what we
recommend for differentsurgeries throughout her
childhood that to me was relief,but also mixed with some grief
there, because it was reliefthat I had a plan and I knew the
outcome was to equalize her leglengths, but grief and the fact
(22:25):
that she has to go through thisand it's a lot on a child.
So to answer your secondquestion on how to deal with
that, I think it's so importantto really think about the
child's mental health.
It's not just about the medicalappointments and the actual
surgeries, it's the physical.
It's not just the physical toll, it's the mental and the
(22:47):
emotional toll, and so I'mreally a big advocate for having
the child be part of you know,child life specialist, like have
a child life specialist thereto have a child psychologist.
That's what Kenley has now awonderful therapist that she
talks to about her fears ofupcoming surgeries, but really
(23:08):
just prioritizing how they feelabout it and listening to them
and letting them advocate fortheir selves too and their
bodies, Sure.
Speaker 1 (23:18):
Perfect.
So I kind of want to go back tothe time of surgery.
Can you walk us through the dayof Kinley's surgery?
What was going through yourmind?
The first one, yes.
What was going through yourmind?
Speaker 2 (23:32):
as you had it, what was going?
Speaker 1 (23:33):
through your mind, had it over to the surgical team
, and how did you anchoryourself in that?
Speaker 3 (23:37):
yes, we were staying in this amazing place that I
call um, like a little slice ofmagic on earth.
It's called the quantum houseand it's part of a wonderful
medical home on the property ofa saint m's hospital where, and
so we were there and we got upsuper early, and there are other
kids that live in the home thatwere also having surgery that
(23:59):
day.
Speaker 1 (24:00):
And how old was she right now?
Speaker 3 (24:02):
Sorry, 19 months old 19 months and so she can only
say, you know a few words andshe has a little Elmo and her
PASI and she's in a diaper still, and so it's extremely
difficult.
It's the hardest thing I'veever done as a mom to hand your
child over and watch them walkdown the surgery corridor.
(24:24):
The most amazing thing aboutthe place we go to is that the
child life specialist was myrock, because I handed her over
and I trusted her as medicalstaff to take over, as mom
basically, and calm her fears,and so watching her go down the
hall with the child lifespecialist was hard, but also
(24:46):
good to know that she hadsomeone she really cared and
trusted, but it was the longestwait of my life.
Cared and trusted, but it wasthe longest wait of my life
Every time someone opened thedoor.
Speaker 2 (24:58):
I jumped up to see if it was her.
Speaker 3 (24:59):
And then the day, the hour it was over and he, dr
Paley, comes out and my bestfriend and I stand up and we're
actually hanging on to like anyword he says and he says her
foot and leg are straight.
You know her ankle.
He basically the very firstsurgery was taking her deformed
ankle because, like Jeff says,without a fibula bone you don't
(25:19):
have, it's on the outside ofyour leg, you don't have an
ankle, it basically don't havestability in that ankle.
That's why the doctor initiallythought it was a club foot.
He took her ankle and basicallymade her one, the absence of
her ankle and made her an ankle.
That day and he told me wouldyou want to see her foot
straight?
So her entire infancy she had aperfectly little foreign foot
(25:41):
but it was turned to the side ina right degree, 90 degree angle
.
And so when I went back torecovery to see her, it was the
first time I saw her little footactually in the correct
position and that was reallyspecial but scary at the same
time to see her cooked, all thetubes and machines and and just
(26:02):
not knowing how she was going toreact when she opened her eyes.
Speaker 1 (26:05):
How long was surgery, that first surgery.
Speaker 3 (26:08):
It was about four and a half five hours, but from
start to finish we were thereeight hours.
Because you have to be there soearly for pre-op and get
everything.
It's a lot of prep time.
And then when you have to stayabout an hour and a half two
hours in the recovery to makesure she's alert enough to go
home.
But the actual surgery wasabout four and a half five hours
.
It's called the super ankle,and then that was followed by.
(26:31):
Three weeks later.
After that soft tissue healedsome, he went in and broke her
tibia in a very specific placeand applied the external fixator
.
That was the apparatus thatwould actually lengthen her bone
over a period of 12 weeks, andthat was successful.
So that was probably thehardest surgery, wasn't the
(26:52):
first ankle one?
Because when you wake up andsee this huge metal apparatus on
your child's leg and it's goingthrough her bone with external
pins coming out of the bone,it's very scary.
You don't want to look at it,you don't want to touch it.
And then you have this one anda half year old child that opens
(27:13):
their eyes and they see it.
It could be very scary for them.
So that was hard.
Speaker 1 (27:17):
Well, do you feel like, and was she in a
tremendous amount of pain?
She?
Speaker 3 (27:22):
was not because we had good pain management in the
hospital.
The staff was was wonderful andthey did a great job.
It was when we left thehospital trying to manage that
at home without the nursingstaff.
And I'd say, if you can getthrough those three days in the
hospital and over that hump andthen get over the first two
weeks of post-op, then it'spretty smooth from there.
(27:46):
But it's that first two weeksthe fatigue sets in, the fear of
the unknown, it's the gettingused to something foreign in the
leg.
It's very difficult.
Speaker 2 (27:56):
Did you have help for yourself during that time?
Was it just your best friend oryour sister that was there with
you so you could maybe tradeoff?
Or was her father present sothat you guys could get some
sleep and be able to care forher?
Speaker 3 (28:12):
Yes, jeff, it's critical during that time that
you really take care of yourself.
I can't do it alone.
It takes a village.
So I had, during surgery, mybest friend, my sister, and then
her dad, and I would trade off.
So I'm primarily the one thatstays in the hospital because at
her age, at 19 months, shewanted mom all the time I had to
lay in hospital with her andsleep with her.
(28:35):
But as she got older like thesecond surgery and certainly
this coming summer her dad'sgoing to spend more time.
But I relied on other moms inthe home.
I relied my own mom, my olderdaughters.
It takes a village andsometimes it's hour by hour, not
day by day.
It takes a village andsometimes it's hour by hour, not
(28:55):
day by day.
It's hour Like can you come andsit with her for an hour so I
can just go take a shower, or Ican just go get something to eat
or a walk outside the hospitaland get some fresh air.
So I have a wonderful village.
Speaker 2 (29:06):
Yes, Good thing you were able to recognize the need
you had for those things, though.
Speaker 1 (29:10):
And be prepared for those.
Speaker 2 (29:12):
Sometimes people don't leave, they just feel so
duty-bound that they can't leave, and no one else could do it
but them.
Speaker 3 (29:19):
Yes, during COVID it was really hard because they
limited us to just one parent.
So we were in the hospital roomfor three days and I couldn't
leave and that was vastlydifferent than the first surgery
where people were helping me.
It felt very isolated and veryjust.
You know, I couldn't leave herat all and we had to.
It was just hard.
(29:40):
So I really appreciate havingmy tribe, my little village
around me.
Um, that will support me, bringme food and, you know, let me
just go take a walk.
It's amazing what some freshmendo.
Just go take a walk.
It's amazing what some freshmendo Go get a shower.
Speaker 1 (29:53):
Yes, yes, oh, that's so good.
As we know, recovery is such alayered process.
You've got the physical,emotional and spiritual pieces
and you just shared some of yourtoughest days and you had a lot
of help during that time fromyour family and close friends.
As the surgeries continued, didthey get better?
(30:16):
Were you able to kind of justease your mind and recognize
okay, this is just, this is theprocess we're going through.
Speaker 2 (30:24):
You knew what you were in for kind of thing?
Speaker 3 (30:27):
Yes, it definitely was.
It got easier for me.
I think it got easier forKenley because she knew what to
expect and it became familiarthe people, the place.
We go to the same place to getx-rays, the same surgery center,
it's the same doctors, it's thesame physical therapist she had
(30:48):
since she was 19 months old.
There's consistency there.
What I feel it's gotten easierbecause we built a sense of
community here, which is soimportant for her.
I think it's also gotten easyfor me because in the first
surgery it's fear of the unknown.
You really truly don't knowwhat you don't know.
But after you do it once andthen you have a second surgery
(31:10):
and it's the same externalfixator that you have to clean
and that you have to turn andlengthen her leg.
It's, it's truly like riding abike, Like we've done this
before, we can do it again.
She even gets very confidentLike oh, I've seen this on my
leg before it doesn't hurt.
It became like she didn't evencall it a boo-boo on her leg.
She would point to a mosquitobite on the other leg and say
(31:32):
there's my boo-boo.
So it got easier for her.
I knew that I was growing inthis journey when God put me in
positions to help others.
I once was the one asking forhelp and guidance and advice and
how to do this, how to cleanthis, what to do when they ask
(31:53):
you this.
But then God started saying yougot this, and then I started.
He put me in positions wherenew moms would come, newly
diagnosed moms, first timesurgery moms and I had already
had a few surgeries under mybelt and I was able to help them
.
So I thought, okay, this isworking, this is giving me some
(32:13):
confidence that I'm doing a goodjob.
It's it's a very hard job, butit's giving me the confidence
that this is the right path, andso I've been able to help other
moms, which has been veryrewarding for me.
Speaker 1 (32:26):
Well, I love that.
Was there a specific moment, amilestone, where you felt your
shoulders drop a little like,okay, she's really going to be?
Speaker 3 (32:38):
okay, it was putting on her first pair of shoes.
I think you know I have threeamazing daughters and my first
two daughters did not have anymedical challenges or issues and
just buying a pair of shoes Itook for granted.
You just go buy them, you putthem on their feet and off they
go.
Kenley didn't have that journey.
(33:00):
Hers was very different.
Her first pair of shoes didn'tcome.
She was almost three years oldafter her first major surgery
and after she went throughphysical therapy we put.
I remember picking up thosepair of shoes from the cobbler
because they have to put alittle lift on the bottom to
equalize her leg lengths, andputting those on in the car in
(33:22):
the parking lot.
I just broke down and saw me andI took a picture, which is
still on my phone, of a pair ofshoes.
Right, not just she's alwaysjust wore one shoe on the other
side, but the senior child thathas gone through all this
surgery and learned to walk witha pair of shoes, that was that
was like okay, this is this, he.
His promise came true, god'spromise that I will correct her
(33:46):
foot through.
You know, dr Paley promised Ican correct her foot and he did,
and that was confirmation.
Wow, this is really in front ofmy eyes.
A true miracle is happening andevery time I saw her walk.
It was a miracle for me.
Speaker 2 (34:03):
I am so grateful to hear that story, but I'm still
curious on the doctor's side fora second.
Yes, of course.
So in order to stabilize theankle, did he have to use some
of the bones of her foot to beable to stabilize that?
Speaker 3 (34:19):
Very good question.
So he actually did an osteotomyof the tibia which?
Speaker 2 (34:25):
is a hole in the tibia.
Speaker 3 (34:27):
Yes, and so he cut a piece a bottom off of her tibia.
So he cut it in half first tolengthen it, but that the very
bottom where her ankle is he cutand then he stacked these bones
together like two blocks andput some hardware through there
to stabilize the ankle in a planof grade position.
(34:47):
So it's basically, if you lookup super ankle, he's patented
that there's a super knee andsuper hip, which is basically
the same thing, just in thoseother joints, but he's making a
stable joint from that end.
The bottom of the tibia bonebecame her ankle.
So he just cut a little piece,stacked it.
(35:09):
Of course this is a terrible wayof explaining a very complex
medical procedure.
But if you look up super ankle,I'm sure with your medical
expertise you'd do a better jobthan I could.
But that's going to give youthe stability.
So it's not just with fibularhemolya lengthening the limb,
it's giving them a functionaljoint that's affected too.
(35:30):
So in this case she had thetype of fibular hemoly that
truly affected the ankle.
Her ankle deformity was sosevere that she would not be
able to ever put her foot downflat on the ground unless he did
this ankle revision surgery.
Speaker 1 (35:46):
Fascinating.
Wow, that's just so fascinatingwhat they can do anymore.
I just wow, that's justincredible.
Courtney, you've been such arock for Kinley, but we also
know it's a lot to carry.
How did you care for yourselfduring this journey and were
there moments where you letyourself break down?
I know you talked about when hehad her.
(36:09):
You know was able to put onboth shoes and you know that was
such an incredible moment.
Speaker 3 (36:14):
and you're doing muscle massages and you're doing
so much with her physically toget her to the goal of walking
(36:38):
independently, that it's so easyfor a caregiver, a parent in
this role, to let themselves goand to pour everything into that
child and really forget abouttaking care of themselves.
So I was starting on that roadand then I thought I can't pour
from an empty cup.
If I don't take care of myselfand prioritize my sleep, my
(37:01):
health, my diet, my well-being,then I'm not going to be able to
help Kenley be successful.
So I started to justimplementing small little doses
of self-care in those smallmoments in between doctor's
appointments and those dailyphysical therapy appointments,
and it looked like simple asjournaling, a few sentence.
(37:23):
It could be a five minute walkoutside to clear my mind.
It could simply be.
I did this a lot, just sittingstill in some quiet, peaceful
moments and letting myself feelwhat I was feeling, not trying
to just push it away, but justreally sitting there.
I wanted to cry and if I wantedto feel, you know, sad, angry,
(37:48):
because you know this is, it's agrief process.
You know you have a child witha diagnosis like this.
You do go through a griefprocess.
You have a child with adiagnosis like this.
You do go through a grievingprocess.
You grieve for them becauseit's something you can't control
and you want them to have atypical childhood, without
surgeries.
But then you realize that's notthe cards you were dealt and
that this God has a plan, a planfor your life.
(38:09):
But also it's hard to see yourchild be in pain.
That was really hard for me soto get.
Oh, I bet.
Oh, it's so hard when she'scrying and um, oh, it hurts and
you you know it's for the best,but just to be in that moment of
of her being reallyuncomfortable, I had to step
back and let myself cry and letmyself grieve and know that it
(38:30):
was okay to feel those moments.
I helped a lot to write thosethings down, because everything
comes and goes in waves.
It's an emotional rollercoaster.
Some days you have strong days,some days you're at a low point
.
But I did a lot of justself-care.
I continue to do that'simportant and find the joy in
the little, small things.
You have to find what gives youthat joy, because sometimes
(38:55):
your day goes by and you thinkback to yourself what did I do
for me today?
So I just have to really makesure this upcoming surgery, that
I eat well, I sleep well, I dothings like you know take a walk
, or even I love things like hotchocolate, or just taking five
minutes.
Speaker 1 (39:14):
The simple things.
Oh, I love it Just doingsomething?
Speaker 3 (39:17):
simple things, the simple things.
Speaker 1 (39:19):
Yeah, oh, I love that , thank you.
So how has this journey changedthe way you show up in the
world, whether in yourrelationships, your work or even
how you mother your otherdaughters?
Speaker 3 (39:33):
It's definitely made me more grounded, more
intentional with people.
I think overall it's made meprotect my peace more fiercely.
Gosh, it's truly changed me.
It totally changed my wholelife, but it gives you a whole
new perspective.
It's allowed me to see theinvisible burdens people carry.
(39:55):
It makes me so much moreempathetic to people because it
opened my eyes to a whole otherworld population in our society
that there's that don't reallyhave a lot of awareness like.
Now.
I see it.
Now I see people struggles inthe, in the just the community
(40:16):
that exists with special needsand kids that use mobility
devices.
It just makes me so much moreempathetic to kids that have
struggles like Kenley and justreally makes me want to educate
and bring more awareness to thatspace and normalize it.
Because Kenley, you know to meshe has a big story to tell, but
(40:40):
she's also the first child andfirst kid in her school that has
a special condition, orthopediccondition.
So I look at it as we need tonormalize and have more
conversations about disabilitieswith children.
So if they do go to school withkids like Kenley that has a
brace on their foot or a shoelift or is in a wheelchair or
(41:02):
has a walker to walk on thatthere's nothing wrong with those
children and a lot of peoplesay what's wrong with you, what
happened?
And they automatically assumesomething's wrong.
So I want to change thatdialogue so it's made me a big
advocate over anything for thisspace and bring more awareness
for the kids with disabilities.
Speaker 2 (41:21):
Yeah, you always want to go.
Hey, I you know.
Speaker 1 (41:24):
What really happened is I got a shark attack, or I
fell down the stairs and mystairs and my mom hit me with an
ax.
Oh my gosh, you're right.
Speaker 3 (41:37):
We've come up with ideas.
What do we tell?
You know we've come up with theshark attack story.
You know we we could try tocome up with funny things when
kids come up and say, oh, whathappened to your leg?
Well, she's very proud of thosescars.
But we were trying to come upwith some fun ways of telling
kids about her surgery.
Speaker 2 (41:54):
Yeah, some people ask me about this and I hit them
with my leg and then thishappened.
Speaker 1 (41:59):
Yeah exactly, but I bet that was kind of a
transition for her to accept andappreciate that this is normal
for her and help othersappreciate that that's her as
well and it doesn't define her,but it's something that she has
(42:21):
you know.
Speaker 2 (42:22):
So, on that line, how is she doing in school and
interactions with other kids andwhere is she there?
Speaker 3 (42:29):
Well, you know that was a big concern of mine is
when you start school.
How are the kids going toaccept her?
What are they going to say?
Is she going to be bullied?
All those things go throughyour mind.
With the kids with specialneeds it's a big fear as a
parent.
So of course you can neverprepare Kids are going to say
what they're going to saywithout their filter, but you do
(42:50):
the best job.
You can never prepare Kids aregoing to say what they're going
to say without their filter, butyou do the best job you can in
making sure your kid has thatself-confidence.
So I would practice with Kenley.
So if we were out and I sawsomeone come up to her and ask
about her leg, I would be thereto listen and if she needed help
a little bit when she wasyounger, I would help her along
with the conversation.
And then she got to where shewas just able to just tell them
(43:12):
oh, I had surgery, I was, I havea special leg.
Speaker 1 (43:17):
And we were very, very fortunate.
Speaker 2 (43:19):
Yes.
Speaker 3 (43:20):
Yes, I have a special leg.
God made me different and we'revery fortunate to have a school
that's very supportive and thatwe haven't encountered any
bullies.
But I was very prepared forthat and I still am.
I don't mind curiosity.
I don't mind questions at allLike tell me about your leg, why
it would happen.
But there's a differencebetween curiosity and asking
(43:40):
questions and just plain out.
You know being cruel and mean,so we haven't encountered that.
So it's so cool to see herclassmates support her.
They will actually modify gamesand rules to help her.
They know that she's not thefastest kid, so when it's her
turn being the person the itplaying, you know, chase they
(44:02):
all.
Instead of running, they allwalk fast.
So it's really nice how herfriends just
really support her and help her.
Yes, and that's one specialthing about having a community
at the Paley Institute is thatthere's kids like her that have
the apparatuses and the walkersand the wheelchairs and the
shoelifts and the braces.
(44:23):
So when she does go there shesees other kids like her and she
doesn't feel like such aoutsider or different.
So that also helps her as wellcome to where she is the only
one and gives her the confidenceto just educate.
Yeah, our goal is to educateand open minds about this limb
(44:44):
difference, community anddisabilities in general.
Speaker 1 (44:47):
Right.
So what are you most proud ofin Kinley and in yourself as her
mom?
Speaker 3 (44:54):
Oh, first thing that comes to my mind, kinley, is
resilience.
Her resilience through all ofthis.
She's gone through some majorsurgeries and each time she just
smiles and just has thisamazing attitude and this
tenacity about her.
I'm just so proud of herstrength.
I guess I'm proud of justfollowing my gut and listening
(45:15):
to God's voice and really justtrusting and listening to my
faith.
I'm proud that I didn't letoutside influences that can be
so easy to listen to and ignoreyour own instinct in God's voice
.
I'm so glad that I listened tomyself and that really changed
(45:36):
her life.
Speaker 2 (45:37):
So is this next surgery coming up?
Is this the last one, or isthere one more after that?
Speaker 3 (45:43):
It'll be one more after this, so this will be
number three of four, and soshe'll be eight years old and we
will have a surgery right afterher eighth birthday this summer
and then she will have this isthe third tibial lengthening,
and our goal here is to do aboutfive centimeters of growth in
that leg.
And what's really cool istechnology has changed, and
(46:08):
that's what's so cool about thehealthcare field is we have all
these advancements.
So in between her surgeries weactually have a new treatment
option.
Rather than the externalfixator that she's had the first
two surgeries, we're actuallygoing to have an internal
lengthening device.
It's going to be a rod insertedin her tibia bone and then
(46:29):
magnet will actually lengthenthe bone this time rather than a
manual.
Speaker 2 (46:34):
Yeah, An external device that stretches.
Speaker 3 (46:37):
Wow, yes.
Speaker 2 (46:38):
Rather than the external device.
Speaker 3 (46:41):
Right.
Speaker 2 (46:42):
I'm interested to see how that works.
You'll have to send us apicture of what that looks like.
Speaker 3 (46:47):
Yes.
Speaker 1 (46:47):
It's truly amazing to see the x-rays.
Yeah, you'll have to come backon and let us know, definitely,
absolutely so.
If a parent listening right nowis facing something scary,
confusing or uncertain, whatwould you say to them from the
other side of this story?
Speaker 3 (47:04):
I would say you're not alone and don't be afraid to
get second or third opinions.
Don't be afraid to ask the hardquestions.
Don't be afraid to advocate foryour child.
You're the only one that knowsyour child the best and listen
to your gut Exactly.
Speaker 2 (47:23):
Well spoken.
Speaker 1 (47:24):
And Jeff, did you have a question?
Speaker 2 (47:27):
I did, but it escapes me now.
Oh, I remember.
After the fourth surgery, whatis the prognosis?
Do they expect that it's goingto be back to or around the same
length as the other leg and beable to have a basically normal
gait and so forth?
Speaker 3 (47:47):
Yes.
So the goal with limblengthening is to achieve equal
leg lengths, and so with eachchild it's different.
So they take a measurementduring that initial consultation
and they have a formula to tellyou.
To achieve equal leg lengthsit's going to take this amount
of surgery.
Some kids only need twosurgeries, some needs three,
(48:07):
some needs four, five, six.
So with Kenley, she had such asevere form we knew we were
going to have four.
So the goal here is notperfection.
We're not looking at the leg tobe look quote perfect.
We're striving for function andno pain, and so we don't have
chronic pain now, which isamazing after all these
(48:29):
surgeries.
So we're looking for afunctional leg that can walk
without any chronic pain, with anormal gait.
So we're looking for the footto be in that typical plantar
grade position, where that meansthat the bottom of the foot is
actually hitting the ground, andwe're looking as close as
(48:50):
possible to get her legs equal.
And so right now we are halfwaythere, so we actually a little
bit more than halfway there.
We've lengthened her leg atotal of 10 centimeters, wow,
and so it's just amazing to seeher leg actually grow and is the
bone just really nice andstrong or is it still fragile?
(49:11):
Yes, so it's great you askedthat.
That was a good question,Tricia.
That was my question to DrPaley.
Does this compromise the bone?
You know, every time you breakit is it going to make it weak,
and that was her dad's majorthing.
Is it going to be weak and thenshe kicks a ball at soccer?
Is it going to, you know, canshe still participate in sports?
(49:31):
So Dr Paley told us actually inthat first email that.
Kenley will be able toparticipate in any and all
sports, so kids with thiscondition can ski and go play.
There's this amazing kid thathas it in both legs.
That's a friend of ours that heis a karate kid.
I mean, he actually kicks withthese legs and chops blocks, and
(49:53):
so the leg actually hardens andbecomes strong, very strong,
just like the other leg.
It doesn't become a weak leg.
What you do see, though, is asmaller leg because you're
missing as Jeff might explainbetter than I can some of the
muscle and the tendons.
So if you look at her from thefront or behind, you will notice
(50:15):
that the affected leg, one thathas fibular hemimelia, is
skinnier and thinner in widthand diameter than the unaffected
leg, but she's okay with thatdifference and okay with the
scars from the surgeries, butwhen she walks it'll be a
functional pain-free.
Speaker 2 (50:36):
That's fantastic.
Speaker 3 (50:37):
I love that.
Speaker 2 (50:38):
It's so often too we see, especially in adults, not
usually with kids, but if you'vehad a place on the body that's
had multiple surgeries, they canhave a thing called chronic
regional pain syndrome.
That can happen from that, andso to have her be basically
pain-free after this really is amiracle.
Speaker 1 (50:58):
Yeah, seriously, Wow, this is such an incredible
story.
So are there any upcomingmilestones, dreams or other
things that she gets to lookforward to?
Speaker 3 (51:10):
Yeah.
So one misconception I think alot of parents have going into
the limb lengthening surgeriesis that they're going to miss
their childhood, that they'regoing to spend all their
childhood in the hospital.
I've heard that from someparents and that has been a
deterrent for them to chooselimb lengthening as a treatment
option.
(51:30):
That's not the case.
Kenley is a very vibrant andthriving second grader, I mean.
So she does theater, she doesart, she is very active and
involved in her church and soshe gets to live a normal
typical life.
Now people say, well, how doyou say it's a normal typical
life?
Now people say, well, that howdo you say it's a normal typical
(51:52):
life?
Cause she's having all theselimb lengthening surgeries.
It's not all the time, like itis every four years.
Every few years you have amajor surgery and it does get
you out of your typical routine.
But she goes right back toliving life and during those
surgeries we're still having funand living life.
It's not all misery, it's notall pain every day.
(52:13):
There's some hard moments, butthere's also some beautiful,
wonderful, happy moments.
So we are really enjoying justbeing a kid and swimming and
doing fun things like learningthe guitar.
She's playing the guitar andyou know it's just it's.
It's.
One thing is don't let themedical diagnosis or the the
(52:35):
upcoming surgery define the kidor just be the only thing that
they do.
You have to remember that theyneed other things to distract
them.
So we're really big on havingfun things planned and she was
in a pageant, yes, and so we dofun things like pageants and
trips and play dates.
(52:55):
A normal life, yes.
Speaker 1 (52:59):
Yes, that's what it's all about Just bringing that
normalcy back into her littleworld.
I love that.
If you were to leave ourlisteners with something that
could benefit them that may beexperiencing something like this
, what would you share with them?
I think?
Speaker 3 (53:18):
most of all is just going back to the little voice,
just being an advocate.
Just don't feel guilty forspeaking up, don't feel guilty
for asking questions.
I love that.
Just really yeah, trusting yourgut, because I think that makes
(53:39):
the biggest difference.
Fear holds some people back.
They don't want to speak up,they don't want to sound like
they don't know what they'retalking about.
But, like I said, you only knowyour child better than anyone
and if you don't speak up andadvocate, then no one will.
So I think, just really justspeaking up and not being afraid
and just being able to listento your instincts and your gut,
(54:04):
because it's there for a reason,right.
Speaker 2 (54:07):
I think that's really good and you know it's also.
I think, if I could add on tothat is just doing your own
research as well.
Speaker 1 (54:17):
I mean sometimes WebMD everything leads to cancer
on WebMD, so you have to be alittle bit careful, but doing
your own research.
Speaker 2 (54:28):
if you don't know or don't know where to go, then
talking to other people likeyourself that have been through
the situation.
That's really helpful forpeople.
So search, and almost everyphysician that does things like
this has a bank of people thatpeople can talk to.
So tap into those things.
Speaker 1 (54:51):
And you were able to talk to those people, right,
Courtney?
Speaker 3 (54:54):
Yes, I love what Jeff shared.
He just made me really realizewhat I wanted.
Another piece of advice istapping into that community.
Thank you, jeff.
That was actually one of mythings I wanted the listeners to
hear is how important thecommunity is.
So your friends, your family,your other children, your
brother, your sister, your mom,dad, they're going to support
(55:14):
you but they don't really knowwhat it's like to walk in your
shoes, because they're there tosupport you, because they love
you.
But you have to reach out toparents that have walked in your
shoes.
That's where I got a lot of mystrength.
And you're right, jeff, ask thephysician if there's any
parents that he can.
You know there's a supportgroup even or if there's any, a
(55:36):
parent or two that you can talkto.
It's so important to have acommunity of people that you
speak a different language.
You know the medical moms,medical dads, they just have
this.
It's like an unspoken languagethat they just understand, and
just to have that support frompeople is really big, is really
important.
Speaker 2 (55:57):
So definitely take advantage of that.
I'm going to put in a littleplug for family doctors right
here, because this is a spotwhere family medicine and
primary care can really shine.
Family medicine and primarycare can really shine.
I have people that are going tospecialists for everything you
can imagine, but I tell themthat if you don't understand
(56:19):
what they're talking about orthey've given you not enough
time to ask the questions, comeback and see me and we'll go
through the notes of the doctoryou saw and we'll try and figure
it out together, or I'll callit myself and get the answers
you're looking for, and thatadvocacy is something that
(56:42):
people take advantage of with mefairly frequently, and so
having a primary doc that youtrust is really helpful
frequently, and so having aprimary doctor that you trust is
really helpful.
Speaker 3 (56:57):
Yes, and I would love to speak to that is we used Art
Kinley's primary care doctor asour home base.
She was the one consistentthing.
It's so important to have aprimary care doctor that knows
your child, that knows yourfamily, that knows your whole
situation, because we werespeaking with specialists that
had just met us for the firsttime and it was so important to
have that sense of familiarityand to have that doctor really
(57:18):
truly know Kenley, her medicalhistory all the way through.
You know birth and beyond, andI would always go to her and ask
questions Is this right?
What are they telling me, isthis good for her, and should I
have her own supplements?
It was always going back to herand that gave me such a sense
of peace, just knowing that shewas in my corner all the time.
Anything Dr Paley or thespecialist would tell me, I
(57:41):
would always go back, becausethe primary care director always
has your child's best interestin mind.
They're loyal to you.
They're your home base.
It's ours, retired after 40 someyears and we were just
heartbroken because she was justfor all three of my children
for 20 years, amazing primarycare doctor, but it's just.
(58:03):
They're invaluable to thisjourney they really are and to
use those experts that know youand your family and because you
can go back and they can giveyou medical advice and questions
for the specialists that youdidn't even think about asking.
Speaker 1 (58:16):
Right.
Speaker 2 (58:18):
Yeah, and the other thing is is that we don't have
any financial or other biastowards doing these procedures.
It's like you know if there's abig procedure that a person is
considering.
I mean even some plasticsurgeries that are elective.
I have people come back afterthey've had their consults and
(58:39):
let's go through this, let'stalk about what they're going to
do.
You know, let's go through thisand make sure you don't need a
second opinion, or if you'recomfortable, did you feel
comfortable with that particulardoctor, or you know, or if
you're comfortable, did you feelcomfortable with that
particular doctor, or you know,things like that and help them
think it through just yes.
Speaker 3 (58:55):
What I like about primary care?
oh, go ahead, trisha I just say,they make everyone feel
comfortable yes, and and alsoabout to just point, like, what
I like about primary carephysicians is they treat the
entire patient as a wholepatient.
So when we go to thespecialists, they're just
looking at Kenley's bone.
They're just focused, fixatedon that area of their specialty,
(59:18):
their expertise, so, andsometimes they the specialist,
they're amazing in their job,but they forget the entire
patient.
It's a whole body.
There's other systems and sothat's why I really depended on
our amazing primary carephysician to look at Kenley as a
whole child and, even thoughwe're operating on her right leg
(59:40):
, how is it affecting all theother things?
How is it affecting her mentalhealth?
How is it affecting her goingto school?
So that's where the primarycare physician such as you is so
valuable, because they bringthat perspective, which is
really important, because somany people just focus on that
one area of the major surgeryand it affects the whole child.
Speaker 1 (01:00:02):
Well, you both are just two rock stars, that's all
I can say you both are amazingand I love that we talked a
little bit about.
You know here what Jeff does aswell, because that's his life.
So thank you for your comments,Courtney, and you know, just
(01:00:22):
highlighting those qualities infamily physicians because
they're important, yes,Especially to me, yes, indeed.
So, Courtney, just thank youfor walking us through this
chapter of your life with somuch honesty, strength and grace
.
We are so grateful you openedyour heart and for reminding us
(01:00:45):
that there was strength andsoftness, clarity and confusion,
confusion and power.
In a mother's intuition.
You've shown us the power ofasking the next question,
holding on to faith and trustingthose small voices that can
absolutely move mountains.
We're so grateful you sharedKinley's journey with us.
We feel so blessed to have hadyou on our show.
(01:01:07):
We just really are so gratefulto have you here today.
And for those of you listening.
I really enjoyed it.
Well good, and it's just beenso fun to get to know you.
We truly have just we've spentsome time off, you know, not
being recording, and we've justit's just been such a delight
it's so much fun.
Yeah, you're just a gem.
(01:01:29):
Well, thank you both.
Yes, and for those of youlistening, if you're navigating
your own journey throughrelational disconnect, emotional
pain or feeling like yourmarriage is beyond repair, I
want to invite you to explore myHealing Hearts program.
It's an eight-monthtransformational experience for
couples who are ready to rebuildtrust, connection and healing,
(01:01:52):
even when it feels like all hopeis lost.
I walk alongside you with tools, truth and the kind of support
that changes everything.
You can learn more by reachingout directly at
trishajamesoncoaching atgmailcom, and I would be honored
to walk with you.
And to our listeners, if you'rewalking through a hard season
right now, we hope thisconversation gave you hope and
(01:02:13):
direction.
And if you know someone whoneeds to hear Courtney's story,
please share this episode withthem.
And if you have a questionyou'd like us to explore on the
show whether it's about medicine, mental health, nutrition,
relationships, or just wantingto share your story and anything
in between again, or justwanting to share your story and
anything in between again pleasesend it to
trishajamesoncoachingatgmailcom.
(01:02:34):
So thank you so much forjoining us today.
Please be sure to subscribe.
We'd love to have you leave usa review and come back next week
for more meaningfulconversations and, as always,
stay curious, stay informed andkeep asking the right questions.
We'll see you next time on theQ&A Files.
Speaker 2 (01:02:51):
Goodbye everybody Bye .
Thanks, Courtney.
Speaker 1 (01:02:53):
Bye, thank you.
Thanks for tuning in to the Q&AFiles, delighted to share
today's gems of wisdom with you.
Your questions light up ourshow, fueling the engaging
dialogues that make ourcommunity extra special.
Keep sending your questions totrishajamesoncoaching at
gmailcom.
Your curiosity is our compass.
Please hit, subscribe, spreadthe word and let's grow the
(01:03:15):
circle of insight and communitytogether.
I'm Trisha Jameson, signing off.
Stay curious, keep thriving andkeep smiling, and I'll catch
you on the next episode.
Hello and welcome to the Q&A Files, the ultimate
health and wellness playground.
I'm your host, tricia Jamieson,a board-certified functional
nutritionist and lifestylepractitioner, ready to lead you
through a world of healthdiscoveries.
Here we dive into a tapestry ofdisease prevention, to
nutrition, exercise, mentalhealth and building strong
relationships, all spiced withdiverse perspectives.
(00:29):
It's not just a podcast, it's acelebration of health, packed
with insights and a twist of fun.
Welcome aboard the Q&A Files,where your questions ignite our
vibrant discussions and lead toa brighter you.
Welcome, wellness warriors, toanother episode of the Q&A Files
.
I'm your host, trisha Jameson,a functional nutritionist and
lifestyle practitioner and alife coach, and, as always, I'm
(00:52):
joined by my co-host and husband, dr Jeff Jameson, a
board-certified family physician.
Hi everybody, yeah, so everyweek on the show we bring you
the stories that move us, teachus and help us to rethink what
it means to be well from theinside out, and today we're
sitting down with someone whohas walked one of the hardest
(01:14):
and most meaningful journeys aparent can face.
I met Courtney Brown in Tony'sgroup, and she's come to several
of my classes, and so we'vebeen able to have a lot of
discussion time with herself andwith Jeff, and we have just
really had so much fun gettingto know Courtney.
(01:36):
Courtney is a dynamic,accomplished leader with more
than two decades of experiencein executive leadership,
healthcare administration andpublic health research.
She works in healthcaresupporting leadership in a
national organization thatfocuses on family medicine,
where she plays a critical rolein strategic initiatives and
(01:57):
national healthcarecollaborations across the US and
Canada.
Her career includes leadinglarge-scale research efforts,
coordinating NIH and CDC-fundedpublic health programs and
managing executive operationswith grace and heart.
But beyond all of that,courtney is a mother, a creator,
a plant and food lover andsomeone who brings faith and
(02:21):
strength into every part of herlife.
She's a mom to three amazingdaughters, two lovable for
babies, and she lights up whenshe's in the kitchen creating
new recipes, something we bothlove.
So today's conversation is verypersonal, it's powerful and it's
one that we will all resonatedeeply with because so many of
(02:42):
you are mothers.
But before we dive intoCourtney's story, let's take a
moment to celebrate.
It's a tradition here on theQ&A Files and with my clients.
It's a way for us to pause andrecognize what's going well in
our life, big or small, andtoday we get to include Courtney
in this journey with us, onthis part of our show.
(03:04):
So what is something that you,jeff and Courtney, would like to
share, what celebration you'dlike to share today?
Speaker 2 (03:12):
Okay, I've got one real quick.
It is a beautiful day here inSpokane, washington.
It's 75 degrees clear skies,and I got up in them with the
airplane and did some flyingaround today, so that was really
fun, and I'm excited to saythat everything landed perfectly
too.
Speaker 1 (03:33):
That's always a good thing.
Love hearing that.
Thank you, Courtney.
Do you have a celebration for?
Speaker 3 (03:40):
us?
I do, and first of all I wantto say thank you for having me
and thank you for that very kindintroduction.
A celebration for me would besomething that just happened on
Saturday of this past weekend,and that is, my daughter, who I
will talk about in a moment, wasin a pageant called the Pageant
of Hope and she won a reallyspecial title and it was a
(04:02):
wonderful opportunity to justsee these kids of all abilities
and special needs just reallyshine on stage and it was a lot
of fun.
As a mom I was really proud ofthat.
Speaker 2 (04:11):
Oh, that's really fun .
Speaker 1 (04:13):
That is so fun.
I'm so glad you shared that.
What a great start to thethings that we're going to share
about your story.
And so my celebration is justkind of what Jeff said We've
been in the 40s, 50s, and so mycelebration is just kind of what
Jeff said it's we've been inthe like forties, fifties, and
so today, with 55, what weskipped right past the fifties.
(04:33):
Yeah, we did.
We haven't had many fifties.
Speaker 2 (04:36):
Yeah, it's been forties, thirties, forties,
thirties, forties and then boom.
Speaker 1 (04:40):
And then it's 75.
And it you know, I was wearingshorts.
Today.
I went for two walks.
I'm like I'm enjoying thisweather to the fullest, because
tomorrow is supposed to be inthe 50s and rainy, and so I just
thoroughly enjoyed thisbeautiful, beautiful day.
This is the beginning of ourspring, but sometimes it teases
(05:01):
us because what we like to saythat every 15 minutes in Spokane
the weather changes.
So if you don't like what youhave outside, just wait 15
minutes, because you'll usuallyget something else.
Speaker 2 (05:12):
So true.
Speaker 1 (05:13):
Anyway, thank you both of you for sharing your
celebrations.
Okay, so, courtney, you'velived in many different chapters
in your life executiveleadership, public health,
family medicine, advocacy butnothing prepares you for the
chapter titled my Child has aRare Diagnosis.
So let's start with Kinley'sstory.
(05:35):
You didn't find out after birth.
You actually learned somethingwasn't right during your
pregnancy, and there's somethingabout hearing that kind of news
while you're still carryingyour baby.
That is supposed to be such atender time.
What kind of information wereyou given?
Did they explain everythingclearly, or was it a swirl of
(05:57):
uncertainty?
Speaker 3 (05:57):
You're so right.
It's supposed to be a verytender and joyful time.
But my world completely changedthe day I was getting my
ultrasound.
I was 20 weeks pregnant andtypically that's when mothers
get the gender ultrasound.
They do the anatomy scan andthings like that.
So we had cheated a little bitand we had already known she was
(06:20):
going to be a girl because wehad some genetic testing.
So we weren't really there tofind out if she was going to be
a boy or girl.
We were really there to justfind out the anatomy and if it
was normal.
So we found out in that scanthat she was missing a right
fibula bone and it was justmissing.
And they didn't really knowwhat the diagnosis was.
They just said they couldn'tsee it and that the tibia bone
(06:43):
that was there was measuringsmaller than the unaffected leg.
Speaker 2 (06:48):
Okay, and for people, first of all, the fibula is the
bone that is on the outside ofthe leg and the tibia bone is on
the inside of the leg.
The tibia is the one thatcarries most of the weight and
the fibula is an important bonefor stability of the lower leg.
Speaker 3 (07:05):
See, I wish I even had Jeff there.
I didn't have anyone there toeven explain those things to me
that day.
It was just silence.
I don't see a bone, don't see afibula bone, and then I was
just.
I left and went home andstarted Googling and researching
it.
Speaker 1 (07:23):
Yeah, okay, so can you take us into the moment when
everything shifted?
What were you feeling and howdid you begin to navigate what
came next?
Speaker 3 (07:33):
So everything shifted that day very rapidly.
It became I'm now going tobecome an expert in whatever
this condition is and I'mstarting from scratch.
So I just Googled the wordsmissing fibula bone.
I remember distinctly being ledto a website that specialized
(07:56):
in kids with missing limbs andit was actually an orthopedic
institute out of state locatedin Florida.
And as soon as I clicked onthat I saw children with metal
devices on their legs that I hadnever seen before and they look
like they had something ontheir leg.
(08:18):
To me it was very scary andbarbaric looking at first.
I had never seen any kind oflimb lengthening on a child, so
that frightened me and scared meand I had no idea what I was
looking at.
First, I had never seen anykind of limb lengthening on a
child, so that frightened me andscared me and I had no idea
what I was looking at.
I had never heard of limbdifferences, I've never even
heard of missing fibula bones,and so then I got on that
webpage a lot of education.
(08:38):
It actually set the title ofthe diagnosis for the first time
.
So it wasn't my OBGYN thatdiagnosed it, it was actually.
I found this website and sortof made an educated guess that
this was called fibularhemomelia.
Speaker 1 (08:53):
So what did your OBGYN tell you?
They?
Speaker 3 (08:57):
actually said it looked like clubfoot and they
told me that we did have aShriners Orthopedic Institute in
our hometown and that they justreferred me to see them as soon
as she was born.
But they could not give me adiagnosis.
She said she had never seenanything like it before but said
on the ultrasound her foot wasin a right, 90 degree right
(09:19):
angle and they just assumed itwas clubfoot.
But just based on what I hadread on that orthopedic website
about limb differences, I readthat it was much more than
clubfoot.
Speaker 1 (09:30):
Okay, now I want to talk about the incredible
turning point when you found DrPaley.
This wasn't just a casualGoogle search.
There was prayer, intuition,persistence.
How did you find him, and whatmade you decide to reach out to
him personally?
Speaker 3 (09:47):
Well, this picks up right after getting that
diagnosis of maybe a clubfoot ora missing fibula bone.
You know, when I did Google andfind the Orthopedic and Spine
Institute, that was Dr Paley'sOrthopedic and Spine Institute,
so I recalled that he was a goodsource.
So I recalled that he was agood source.
I think I read during my20-week ultrasound that he was
(10:08):
the top expert in the ofpublications and he had a lot of
good diagrams and pictures andwhat I appreciated about is he
(10:31):
had patient stories so I couldclick on pictures and read other
kids.
So the story really took amajor turn when I had this
knowledge from pregnancy.
But Kenley was born and I tookher to Shriners, like my OBGYN
had referred me to.
She said I really recommend yougoing to Shriners and she said
(10:53):
we have top specialists thereand there's a specialist there
who's been treating kids withher condition.
And so when she was threemonths old I took her to
Shriners and at six months old Itook her back and at nine
months old.
So I went three different timesand we saw the same orthopedic
surgeon and during all three ofthose visits, which were very
(11:16):
emotionally hard to sit throughand listen, we were told her dad
and I were told all three timesthat she had such a severe case
of fibular hemimelia that wehad to amputate and that we
should amputate, and that limblengthening really wasn't even
an option to discuss, that itwould cause her just a really
(11:37):
hard childhood, and that therewas no guarantee she'd even walk
with those surgeries.
So they were really encouragingme let's hurry and get this
scheduled, because we want toamputate before she walks.
Speaker 2 (11:48):
That sounds really discouraging.
I just wondered how did youfeel when you had that decision
thrust upon you.
Speaker 3 (11:57):
It was like someone punches you in the gut, it just
yes.
Speaker 1 (12:01):
Before you get to that, I just hold on to that
thought.
So now you didn't know about DrPaley until later, so it wasn't
in when you were still pregnant.
So it was like nine months whenthey were telling you Okay, yes
, so sorry, no, please sharewhat you definitely asked.
Speaker 3 (12:24):
I have never talked to Dr Paley or even reached out.
I just used his website as mysource of education and
knowledge about this conditionshe might have when I was
pregnant.
I didn't reach out to him untila year later when.
I had scheduled the amputationsurgery.
So after those threeappointments at Shriners and
(12:45):
consulting with this orthopedicsurgeon and looking at x-rays
three different times, Iremember at nine months of age
she handed me a box of tissuesbecause I was sobbing at this
decision and, to answer Jeff'squestion, it really felt like
someone's punching me in the gut, like my heart just sank when
they just said you know, this isyour only option for her to
have you know, a fulfilled,successful life and she's not
(13:09):
going to be able to really walkand if you, she didn't.
Really, I felt like thephysician was one side of she
was really pushing andadvocating for amputation,
rather than giving me all thefacts to for me to make the best
informed decision.
I felt like she was reallytrying to persuade me and so I
listened to her.
It is, and I looked at her asan expert in the field and so I
(13:33):
did schedule it.
I thought, well, I've been toyou three different times, the
information has not changed.
I trust you as a healthcareprofessional.
I'm going to go ahead andschedule it.
And so I scheduled theamputation surgery for April
30th of 2018.
And Kenley was 10 months old andthey said as soon as she starts
pulling up and we all have hadthose moments, those milestones,
(13:55):
when our infants are learningto cruise and they pull up on
the couch or the sofa table, andthat's when you celebrate.
Well, I was dreading that daybecause I knew that's the day I
have to call Shriners and wehave to schedule the amputation.
So it was like I want you togrow, but I don't want you to
grow up, because then we have todo this hard thing that's gonna
really change.
(14:16):
So it was hard, but I did it.
I didn't think there wasanother option at that point.
Speaker 2 (14:21):
Did they give you any rationale about why, at that
particular time, when shestarted to cruise, that it was
the time to do an amputation?
Why not before that, or why notafter that?
Speaker 3 (14:33):
That's a very good question.
They typically like to doamputations for kids with limb
differences before they taketheir first steps.
The philosophy behind that isthat when they do take their
first step it'll be with theirprosthetic leg.
And those kids thrive.
They start walking within dayswith the leg and it's just
becomes natural because theydon't know any different.
(14:55):
And I knew deep down in my heart, you know, with Kenley having a
prosthetic leg she was going tohave a wonderful, successful
life.
I even met with an amazingamputee who was so wonderful and
just gracious with her time tocome over to our home and teach
us about amputee and prostheticlegs before I met Dr Paley.
(15:15):
So I knew that if that wasGod's plan for her life and we
were going to go in that routeof amputation, we were going to
make that work for her.
But I couldn't ignore thislittle voice inside me that kept
just whispering to me andnudging me to listen to my
instincts and get a secondopinion.
So I scheduled the amputationsurgery for April 30th and six
(15:41):
days before the amputationsurgery that little voice got
stronger and stronger and itkept saying second opinion
because I had not, you know,been outside of the Shriners
Hospital facility.
I had not talked to any otherexperts, I had just Googled Dr
Paley.
I just read some things on hiswebsite.
I've not reached out to anyone.
(16:02):
So I decided that I was runningout of time.
It was six days before theamputation, so I just Googled Dr
Paley's email address again,went to the same website that
was my source of knowledge forthat year before when I was
pregnant, and luckily he had hisemail on there and I sat there
and I poured my heart out.
Speaker 1 (16:23):
Yeah, I was just saying.
So what did that first exchangefeel like?
Did it give you immediate hope,or were there still doubts and
unknowns you had to hold onto atthe same time?
Speaker 3 (16:33):
Wow, that's such a good question, tricia, because I
truly feel that April, april30th, will always be etched in
my heart forever as a specialday that changed the trajectory
of Kenley's life forever andchanged our lives as her parents
forever.
It was like that first emailsentence that said Courtney,
(16:54):
comma, I can fully correctKenley's leg so she can run,
jump, walk and play.
That will.
I'll never forget the impactthat had.
When I read that that day it wasthe sense of peace came over me
(17:15):
, that I trusted my instincts,but also that I said a prayer
before I wrote the email andI've said God, if this is your
will for her life, to have theamputation, I will show up
Monday and do that as planned.
But if it's not, I pray overthis email that you know Dr
Paley will close the door for meand that'll give me
confirmation to do theamputation, or maybe he'll see
something and that'll open a newdoor for another avenue,
(17:35):
another treatment plan.
So I was just willing to trustGod that this second opinion was
going to either, you know,confirm that I was doing the
right thing or give me anotheroption.
And that's what it exactly did.
It just truly gave me anotheroption that I had not even
thought about or even thoughtwas possible.
So Dr Haley says he makes theimpossible possible and he does.
Speaker 2 (17:59):
When you sent that original email?
Did you send images with thatemail of her x-rays or how did
you get his attention?
Speaker 3 (18:08):
Yes, Jeff, you always ask the great questions as a
physician because you alwaysthink about the physician's
perspective.
And I thought about that.
To get his attention I need toattach the x-rays.
So I did that.
I put all the x-rays fromShriners in that email and I
think that's what actuallyhelped me get a quicker response
.
Yes, because he was able tolook at those.
(18:30):
And in that same response emailback he said I've looked at the
x-rays, I can do this.
She actually has five toes andI have operated on kids with two
and three toes.
Speaker 1 (18:43):
So why was that actually so?
Why was that so important?
Speaker 3 (18:48):
So he was saying so he can do anything, even with
kids with a few toes two, three,four, five.
But he was saying that he evenput in the email I have had
great outcomes with kids withtwo to three toes, but now that
Kenley has all five, he saidjust imagine what I could do
with a perfectly formed foot.
(19:08):
So, another thing about fibularhemimelia is that it doesn't
just mean the bone is missingand the leg is shorter than the
unaffected leg.
It also causes deformities inthe foot and the ankle and
sometimes the knee.
So Kenley's foot was aperfectly formed foot with all
five toes.
So he was encouraging me not toamputate because he said I can
(19:29):
work with that.
It gives me a lot more to workwith.
Speaker 1 (19:32):
Oh, I love this.
So we often talk about thesemoments as fate or divine
intervention, and I know faithplays a big part in your life.
So, looking back, do you seethat moment of finding Dr Paley
as one of those amazingspiritual nudges that you were
looking for?
Speaker 3 (19:51):
Absolutely.
That's the only way I candescribe it.
It can't be described any otherway.
But it was God's voice and Hisfootprints are all over this
journey and he keeps showing upand showing me how he's here and
how he's with us.
And I pray that I will keepwalking through the doors, lord,
(20:13):
as long as you keep openingthem, I'll keep walking through
and he keeps opening those doors.
He made it possible, he workedout so many obstacles to get us
to Dr Paley's Institute, but itwas truly taking a moment to
listen and to trust your gut andtrust your faith, because
there's a lot of uncertaintiesin this medical journey.
(20:35):
You know God didn't promisethat it would be easy, but he
did promise it would be worth it, and it's the fear of the
unknown I love that.
Speaker 1 (20:44):
I love that.
So, as things move forward withDr Paley and his team, what was
the decision-making processlike leading up to the surgery
and how did you prepare Kinleyand yourself for what was ahead
of you both?
Speaker 3 (20:57):
Well, this journey is definitely not a sprint, it's a
marathon and he's very upfrontthat this is not a one-time done
.
This is a long-term processthat will yield great outcomes
in the end.
But in the beginning you'regoing to have to endure three to
four major surgeries.
So we knew the timeline wasgoing to be operations at age
(21:19):
two, four, eight and 12.
And he was very upfront andvery transparent about that at
that first initial consultation.
That laid out the timeline forus and we were able to make the
best informed decision based onwhat we thought was best for
Kenley.
Kids with this condition.
It's not always the best thingto lengthen their limbs.
(21:41):
It may be best for them toamputate, because each child's
case severity type there's alsofour different types that Paley
classifies on his website.
So you have to take that inconsideration too, that it's
just not the same answer forevery child.
So when we were presented forher case, for her severity, for
(22:02):
her special type of thiscondition, this is what we
recommend for differentsurgeries throughout her
childhood that to me was relief,but also mixed with some grief
there, because it was reliefthat I had a plan and I knew the
outcome was to equalize her leglengths, but grief and the fact
(22:25):
that she has to go through thisand it's a lot on a child.
So to answer your secondquestion on how to deal with
that, I think it's so importantto really think about the
child's mental health.
It's not just about the medicalappointments and the actual
surgeries, it's the physical.
It's not just the physical toll, it's the mental and the
(22:47):
emotional toll, and so I'mreally a big advocate for having
the child be part of you know,child life specialist, like have
a child life specialist thereto have a child psychologist.
That's what Kenley has now awonderful therapist that she
talks to about her fears ofupcoming surgeries, but really
(23:08):
just prioritizing how they feelabout it and listening to them
and letting them advocate fortheir selves too and their
bodies, Sure.
Speaker 1 (23:18):
Perfect.
So I kind of want to go back tothe time of surgery.
Can you walk us through the dayof Kinley's surgery?
What was going through yourmind?
The first one, yes.
What was going through yourmind?
Speaker 2 (23:32):
as you had it, what was going?
Speaker 1 (23:33):
through your mind, had it over to the surgical team
, and how did you anchoryourself in that?
Speaker 3 (23:37):
yes, we were staying in this amazing place that I
call um, like a little slice ofmagic on earth.
It's called the quantum houseand it's part of a wonderful
medical home on the property ofa saint m's hospital where, and
so we were there and we got upsuper early, and there are other
kids that live in the home thatwere also having surgery that
(23:59):
day.
Speaker 1 (24:00):
And how old was she right now?
Speaker 3 (24:02):
Sorry, 19 months old 19 months and so she can only
say, you know a few words andshe has a little Elmo and her
PASI and she's in a diaper still, and so it's extremely
difficult.
It's the hardest thing I'veever done as a mom to hand your
child over and watch them walkdown the surgery corridor.
(24:24):
The most amazing thing aboutthe place we go to is that the
child life specialist was myrock, because I handed her over
and I trusted her as medicalstaff to take over, as mom
basically, and calm her fears,and so watching her go down the
hall with the child lifespecialist was hard, but also
(24:46):
good to know that she hadsomeone she really cared and
trusted, but it was the longestwait of my life.
Cared and trusted, but it wasthe longest wait of my life
Every time someone opened thedoor.
Speaker 2 (24:58):
I jumped up to see if it was her.
Speaker 3 (24:59):
And then the day, the hour it was over and he, dr
Paley, comes out and my bestfriend and I stand up and we're
actually hanging on to like anyword he says and he says her
foot and leg are straight.
You know her ankle.
He basically the very firstsurgery was taking her deformed
ankle because, like Jeff says,without a fibula bone you don't
(25:19):
have, it's on the outside ofyour leg, you don't have an
ankle, it basically don't havestability in that ankle.
That's why the doctor initiallythought it was a club foot.
He took her ankle and basicallymade her one, the absence of
her ankle and made her an ankle.
That day and he told me wouldyou want to see her foot
straight?
So her entire infancy she had aperfectly little foreign foot
(25:41):
but it was turned to the side ina right degree, 90 degree angle
.
And so when I went back torecovery to see her, it was the
first time I saw her little footactually in the correct
position and that was reallyspecial but scary at the same
time to see her cooked, all thetubes and machines and and just
(26:02):
not knowing how she was going toreact when she opened her eyes.
Speaker 1 (26:05):
How long was surgery, that first surgery.
Speaker 3 (26:08):
It was about four and a half five hours, but from
start to finish we were thereeight hours.
Because you have to be there soearly for pre-op and get
everything.
It's a lot of prep time.
And then when you have to stayabout an hour and a half two
hours in the recovery to makesure she's alert enough to go
home.
But the actual surgery wasabout four and a half five hours
.
It's called the super ankle,and then that was followed by.
(26:31):
Three weeks later.
After that soft tissue healedsome, he went in and broke her
tibia in a very specific placeand applied the external fixator
.
That was the apparatus thatwould actually lengthen her bone
over a period of 12 weeks, andthat was successful.
So that was probably thehardest surgery, wasn't the
(26:52):
first ankle one?
Because when you wake up andsee this huge metal apparatus on
your child's leg and it's goingthrough her bone with external
pins coming out of the bone,it's very scary.
You don't want to look at it,you don't want to touch it.
And then you have this one anda half year old child that opens
(27:13):
their eyes and they see it.
It could be very scary for them.
So that was hard.
Speaker 1 (27:17):
Well, do you feel like, and was she in a
tremendous amount of pain?
She?
Speaker 3 (27:22):
was not because we had good pain management in the
hospital.
The staff was was wonderful andthey did a great job.
It was when we left thehospital trying to manage that
at home without the nursingstaff.
And I'd say, if you can getthrough those three days in the
hospital and over that hump andthen get over the first two
weeks of post-op, then it'spretty smooth from there.
(27:46):
But it's that first two weeksthe fatigue sets in, the fear of
the unknown, it's the gettingused to something foreign in the
leg.
It's very difficult.
Speaker 2 (27:56):
Did you have help for yourself during that time?
Was it just your best friend oryour sister that was there with
you so you could maybe tradeoff?
Or was her father present sothat you guys could get some
sleep and be able to care forher?
Speaker 3 (28:12):
Yes, jeff, it's critical during that time that
you really take care of yourself.
I can't do it alone.
It takes a village.
So I had, during surgery, mybest friend, my sister, and then
her dad, and I would trade off.
So I'm primarily the one thatstays in the hospital because at
her age, at 19 months, shewanted mom all the time I had to
lay in hospital with her andsleep with her.
(28:35):
But as she got older like thesecond surgery and certainly
this coming summer her dad'sgoing to spend more time.
But I relied on other moms inthe home.
I relied my own mom, my olderdaughters.
It takes a village andsometimes it's hour by hour, not
day by day.
It takes a village andsometimes it's hour by hour, not
(28:55):
day by day.
It's hour Like can you come andsit with her for an hour so I
can just go take a shower, or Ican just go get something to eat
or a walk outside the hospitaland get some fresh air.
So I have a wonderful village.
Speaker 2 (29:06):
Yes, Good thing you were able to recognize the need
you had for those things, though.
Speaker 1 (29:10):
And be prepared for those.
Speaker 2 (29:12):
Sometimes people don't leave, they just feel so
duty-bound that they can't leave, and no one else could do it
but them.
Speaker 3 (29:19):
Yes, during COVID it was really hard because they
limited us to just one parent.
So we were in the hospital roomfor three days and I couldn't
leave and that was vastlydifferent than the first surgery
where people were helping me.
It felt very isolated and veryjust.
You know, I couldn't leave herat all and we had to.
It was just hard.
(29:40):
So I really appreciate havingmy tribe, my little village
around me.
Um, that will support me, bringme food and, you know, let me
just go take a walk.
It's amazing what some freshmendo.
Just go take a walk.
It's amazing what some freshmendo Go get a shower.
Speaker 1 (29:53):
Yes, yes, oh, that's so good.
As we know, recovery is such alayered process.
You've got the physical,emotional and spiritual pieces
and you just shared some of yourtoughest days and you had a lot
of help during that time fromyour family and close friends.
As the surgeries continued, didthey get better?
(30:16):
Were you able to kind of justease your mind and recognize
okay, this is just, this is theprocess we're going through.
Speaker 2 (30:24):
You knew what you were in for kind of thing?
Speaker 3 (30:27):
Yes, it definitely was.
It got easier for me.
I think it got easier forKenley because she knew what to
expect and it became familiarthe people, the place.
We go to the same place to getx-rays, the same surgery center,
it's the same doctors, it's thesame physical therapist she had
(30:48):
since she was 19 months old.
There's consistency there.
What I feel it's gotten easierbecause we built a sense of
community here, which is soimportant for her.
I think it's also gotten easyfor me because in the first
surgery it's fear of the unknown.
You really truly don't knowwhat you don't know.
But after you do it once andthen you have a second surgery
(31:10):
and it's the same externalfixator that you have to clean
and that you have to turn andlengthen her leg.
It's, it's truly like riding abike, Like we've done this
before, we can do it again.
She even gets very confidentLike oh, I've seen this on my
leg before it doesn't hurt.
It became like she didn't evencall it a boo-boo on her leg.
She would point to a mosquitobite on the other leg and say
(31:32):
there's my boo-boo.
So it got easier for her.
I knew that I was growing inthis journey when God put me in
positions to help others.
I once was the one asking forhelp and guidance and advice and
how to do this, how to cleanthis, what to do when they ask
(31:53):
you this.
But then God started saying yougot this, and then I started.
He put me in positions wherenew moms would come, newly
diagnosed moms, first timesurgery moms and I had already
had a few surgeries under mybelt and I was able to help them
.
So I thought, okay, this isworking, this is giving me some
(32:13):
confidence that I'm doing a goodjob.
It's it's a very hard job, butit's giving me the confidence
that this is the right path, andso I've been able to help other
moms, which has been veryrewarding for me.
Speaker 1 (32:26):
Well, I love that.
Was there a specific moment, amilestone, where you felt your
shoulders drop a little like,okay, she's really going to be?
Speaker 3 (32:38):
okay, it was putting on her first pair of shoes.
I think you know I have threeamazing daughters and my first
two daughters did not have anymedical challenges or issues and
just buying a pair of shoes Itook for granted.
You just go buy them, you putthem on their feet and off they
go.
Kenley didn't have that journey.
(33:00):
Hers was very different.
Her first pair of shoes didn'tcome.
She was almost three years oldafter her first major surgery
and after she went throughphysical therapy we put.
I remember picking up thosepair of shoes from the cobbler
because they have to put alittle lift on the bottom to
equalize her leg lengths, andputting those on in the car in
(33:22):
the parking lot.
I just broke down and saw me andI took a picture, which is
still on my phone, of a pair ofshoes.
Right, not just she's alwaysjust wore one shoe on the other
side, but the senior child thathas gone through all this
surgery and learned to walk witha pair of shoes, that was that
was like okay, this is this, he.
His promise came true, god'spromise that I will correct her
(33:46):
foot through.
You know, dr Paley promised Ican correct her foot and he did,
and that was confirmation.
Wow, this is really in front ofmy eyes.
A true miracle is happening andevery time I saw her walk.
It was a miracle for me.
Speaker 2 (34:03):
I am so grateful to hear that story, but I'm still
curious on the doctor's side fora second.
Yes, of course.
So in order to stabilize theankle, did he have to use some
of the bones of her foot to beable to stabilize that?
Speaker 3 (34:19):
Very good question.
So he actually did an osteotomyof the tibia which?
Speaker 2 (34:25):
is a hole in the tibia.
Speaker 3 (34:27):
Yes, and so he cut a piece a bottom off of her tibia.
So he cut it in half first tolengthen it, but that the very
bottom where her ankle is he cutand then he stacked these bones
together like two blocks andput some hardware through there
to stabilize the ankle in a planof grade position.
(34:47):
So it's basically, if you lookup super ankle, he's patented
that there's a super knee andsuper hip, which is basically
the same thing, just in thoseother joints, but he's making a
stable joint from that end.
The bottom of the tibia bonebecame her ankle.
So he just cut a little piece,stacked it.
(35:09):
Of course this is a terrible wayof explaining a very complex
medical procedure.
But if you look up super ankle,I'm sure with your medical
expertise you'd do a better jobthan I could.
But that's going to give youthe stability.
So it's not just with fibularhemolya lengthening the limb,
it's giving them a functionaljoint that's affected too.
(35:30):
So in this case she had thetype of fibular hemoly that
truly affected the ankle.
Her ankle deformity was sosevere that she would not be
able to ever put her foot downflat on the ground unless he did
this ankle revision surgery.
Speaker 1 (35:46):
Fascinating.
Wow, that's just so fascinatingwhat they can do anymore.
I just wow, that's justincredible.
Courtney, you've been such arock for Kinley, but we also
know it's a lot to carry.
How did you care for yourselfduring this journey and were
there moments where you letyourself break down?
I know you talked about when hehad her.
(36:09):
You know was able to put onboth shoes and you know that was
such an incredible moment.
Speaker 3 (36:14):
and you're doing muscle massages and you're doing
so much with her physically toget her to the goal of walking
(36:38):
independently, that it's so easyfor a caregiver, a parent in
this role, to let themselves goand to pour everything into that
child and really forget abouttaking care of themselves.
So I was starting on that roadand then I thought I can't pour
from an empty cup.
If I don't take care of myselfand prioritize my sleep, my
(37:01):
health, my diet, my well-being,then I'm not going to be able to
help Kenley be successful.
So I started to justimplementing small little doses
of self-care in those smallmoments in between doctor's
appointments and those dailyphysical therapy appointments,
and it looked like simple asjournaling, a few sentence.
(37:23):
It could be a five minute walkoutside to clear my mind.
It could simply be.
I did this a lot, just sittingstill in some quiet, peaceful
moments and letting myself feelwhat I was feeling, not trying
to just push it away, but justreally sitting there.
I wanted to cry and if I wantedto feel, you know, sad, angry,
(37:48):
because you know this is, it's agrief process.
You know you have a child witha diagnosis like this.
You do go through a griefprocess.
You have a child with adiagnosis like this.
You do go through a grievingprocess.
You grieve for them becauseit's something you can't control
and you want them to have atypical childhood, without
surgeries.
But then you realize that's notthe cards you were dealt and
that this God has a plan, a planfor your life.
(38:09):
But also it's hard to see yourchild be in pain.
That was really hard for me soto get.
Oh, I bet.
Oh, it's so hard when she'scrying and um, oh, it hurts and
you you know it's for the best,but just to be in that moment of
of her being reallyuncomfortable, I had to step
back and let myself cry and letmyself grieve and know that it
(38:30):
was okay to feel those moments.
I helped a lot to write thosethings down, because everything
comes and goes in waves.
It's an emotional rollercoaster.
Some days you have strong days,some days you're at a low point
.
But I did a lot of justself-care.
I continue to do that'simportant and find the joy in
the little, small things.
You have to find what gives youthat joy, because sometimes
(38:55):
your day goes by and you thinkback to yourself what did I do
for me today?
So I just have to really makesure this upcoming surgery, that
I eat well, I sleep well, I dothings like you know take a walk
, or even I love things like hotchocolate, or just taking five
minutes.
Speaker 1 (39:14):
The simple things.
Oh, I love it Just doingsomething?
Speaker 3 (39:17):
simple things, the simple things.
Speaker 1 (39:19):
Yeah, oh, I love that , thank you.
So how has this journey changedthe way you show up in the
world, whether in yourrelationships, your work or even
how you mother your otherdaughters?
Speaker 3 (39:33):
It's definitely made me more grounded, more
intentional with people.
I think overall it's made meprotect my peace more fiercely.
Gosh, it's truly changed me.
It totally changed my wholelife, but it gives you a whole
new perspective.
It's allowed me to see theinvisible burdens people carry.
(39:55):
It makes me so much moreempathetic to people because it
opened my eyes to a whole otherworld population in our society
that there's that don't reallyhave a lot of awareness like.
Now.
I see it.
Now I see people struggles inthe, in the just the community
(40:16):
that exists with special needsand kids that use mobility
devices.
It just makes me so much moreempathetic to kids that have
struggles like Kenley and justreally makes me want to educate
and bring more awareness to thatspace and normalize it.
Because Kenley, you know to meshe has a big story to tell, but
(40:40):
she's also the first child andfirst kid in her school that has
a special condition, orthopediccondition.
So I look at it as we need tonormalize and have more
conversations about disabilitieswith children.
So if they do go to school withkids like Kenley that has a
brace on their foot or a shoelift or is in a wheelchair or
(41:02):
has a walker to walk on thatthere's nothing wrong with those
children and a lot of peoplesay what's wrong with you, what
happened?
And they automatically assumesomething's wrong.
So I want to change thatdialogue so it's made me a big
advocate over anything for thisspace and bring more awareness
for the kids with disabilities.
Speaker 2 (41:21):
Yeah, you always want to go.
Hey, I you know.
Speaker 1 (41:24):
What really happened is I got a shark attack, or I
fell down the stairs and mystairs and my mom hit me with an
ax.
Oh my gosh, you're right.
Speaker 3 (41:37):
We've come up with ideas.
What do we tell?
You know we've come up with theshark attack story.
You know we we could try tocome up with funny things when
kids come up and say, oh, whathappened to your leg?
Well, she's very proud of thosescars.
But we were trying to come upwith some fun ways of telling
kids about her surgery.
Speaker 2 (41:54):
Yeah, some people ask me about this and I hit them
with my leg and then thishappened.
Speaker 1 (41:59):
Yeah exactly, but I bet that was kind of a
transition for her to accept andappreciate that this is normal
for her and help othersappreciate that that's her as
well and it doesn't define her,but it's something that she has
(42:21):
you know.
Speaker 2 (42:22):
So, on that line, how is she doing in school and
interactions with other kids andwhere is she there?
Speaker 3 (42:29):
Well, you know that was a big concern of mine is
when you start school.
How are the kids going toaccept her?
What are they going to say?
Is she going to be bullied?
All those things go throughyour mind.
With the kids with specialneeds it's a big fear as a
parent.
So of course you can neverprepare Kids are going to say
what they're going to saywithout their filter, but you do
(42:50):
the best job.
You can never prepare Kids aregoing to say what they're going
to say without their filter, butyou do the best job you can in
making sure your kid has thatself-confidence.
So I would practice with Kenley.
So if we were out and I sawsomeone come up to her and ask
about her leg, I would be thereto listen and if she needed help
a little bit when she wasyounger, I would help her along
with the conversation.
And then she got to where shewas just able to just tell them
(43:12):
oh, I had surgery, I was, I havea special leg.
Speaker 1 (43:17):
And we were very, very fortunate.
Speaker 2 (43:19):
Yes.
Speaker 3 (43:20):
Yes, I have a special leg.
God made me different and we'revery fortunate to have a school
that's very supportive and thatwe haven't encountered any
bullies.
But I was very prepared forthat and I still am.
I don't mind curiosity.
I don't mind questions at allLike tell me about your leg, why
it would happen.
But there's a differencebetween curiosity and asking
(43:40):
questions and just plain out.
You know being cruel and mean,so we haven't encountered that.
So it's so cool to see herclassmates support her.
They will actually modify gamesand rules to help her.
They know that she's not thefastest kid, so when it's her
turn being the person the itplaying, you know, chase they
(44:02):
all.
Instead of running, they allwalk fast.
So it's really nice how herfriends just
really support her and help her.
Yes, and that's one specialthing about having a community
at the Paley Institute is thatthere's kids like her that have
the apparatuses and the walkersand the wheelchairs and the
shoelifts and the braces.
(44:23):
So when she does go there shesees other kids like her and she
doesn't feel like such aoutsider or different.
So that also helps her as wellcome to where she is the only
one and gives her the confidenceto just educate.
Yeah, our goal is to educateand open minds about this limb
(44:44):
difference, community anddisabilities in general.
Speaker 1 (44:47):
Right.
So what are you most proud ofin Kinley and in yourself as her
mom?
Speaker 3 (44:54):
Oh, first thing that comes to my mind, kinley, is
resilience.
Her resilience through all ofthis.
She's gone through some majorsurgeries and each time she just
smiles and just has thisamazing attitude and this
tenacity about her.
I'm just so proud of herstrength.
I guess I'm proud of justfollowing my gut and listening
(45:15):
to God's voice and really justtrusting and listening to my
faith.
I'm proud that I didn't letoutside influences that can be
so easy to listen to and ignoreyour own instinct in God's voice
.
I'm so glad that I listened tomyself and that really changed
(45:36):
her life.
Speaker 2 (45:37):
So is this next surgery coming up?
Is this the last one, or isthere one more after that?
Speaker 3 (45:43):
It'll be one more after this, so this will be
number three of four, and soshe'll be eight years old and we
will have a surgery right afterher eighth birthday this summer
and then she will have this isthe third tibial lengthening,
and our goal here is to do aboutfive centimeters of growth in
that leg.
And what's really cool istechnology has changed, and
(46:08):
that's what's so cool about thehealthcare field is we have all
these advancements.
So in between her surgeries weactually have a new treatment
option.
Rather than the externalfixator that she's had the first
two surgeries, we're actuallygoing to have an internal
lengthening device.
It's going to be a rod insertedin her tibia bone and then
(46:29):
magnet will actually lengthenthe bone this time rather than a
manual.
Speaker 2 (46:34):
Yeah, An external device that stretches.
Speaker 3 (46:37):
Wow, yes.
Speaker 2 (46:38):
Rather than the external device.
Speaker 3 (46:41):
Right.
Speaker 2 (46:42):
I'm interested to see how that works.
You'll have to send us apicture of what that looks like.
Speaker 3 (46:47):
Yes.
Speaker 1 (46:47):
It's truly amazing to see the x-rays.
Yeah, you'll have to come backon and let us know, definitely,
absolutely so.
If a parent listening right nowis facing something scary,
confusing or uncertain, whatwould you say to them from the
other side of this story?
Speaker 3 (47:04):
I would say you're not alone and don't be afraid to
get second or third opinions.
Don't be afraid to ask the hardquestions.
Don't be afraid to advocate foryour child.
You're the only one that knowsyour child the best and listen
to your gut Exactly.
Speaker 2 (47:23):
Well spoken.
Speaker 1 (47:24):
And Jeff, did you have a question?
Speaker 2 (47:27):
I did, but it escapes me now.
Oh, I remember.
After the fourth surgery, whatis the prognosis?
Do they expect that it's goingto be back to or around the same
length as the other leg and beable to have a basically normal
gait and so forth?
Speaker 3 (47:47):
Yes.
So the goal with limblengthening is to achieve equal
leg lengths, and so with eachchild it's different.
So they take a measurementduring that initial consultation
and they have a formula to tellyou.
To achieve equal leg lengthsit's going to take this amount
of surgery.
Some kids only need twosurgeries, some needs three,
(48:07):
some needs four, five, six.
So with Kenley, she had such asevere form we knew we were
going to have four.
So the goal here is notperfection.
We're not looking at the leg tobe look quote perfect.
We're striving for function andno pain, and so we don't have
chronic pain now, which isamazing after all these
(48:29):
surgeries.
So we're looking for afunctional leg that can walk
without any chronic pain, with anormal gait.
So we're looking for the footto be in that typical plantar
grade position, where that meansthat the bottom of the foot is
actually hitting the ground, andwe're looking as close as
(48:50):
possible to get her legs equal.
And so right now we are halfwaythere, so we actually a little
bit more than halfway there.
We've lengthened her leg atotal of 10 centimeters, wow,
and so it's just amazing to seeher leg actually grow and is the
bone just really nice andstrong or is it still fragile?
(49:11):
Yes, so it's great you askedthat.
That was a good question,Tricia.
That was my question to DrPaley.
Does this compromise the bone?
You know, every time you breakit is it going to make it weak,
and that was her dad's majorthing.
Is it going to be weak and thenshe kicks a ball at soccer?
Is it going to, you know, canshe still participate in sports?
(49:31):
So Dr Paley told us actually inthat first email that.
Kenley will be able toparticipate in any and all
sports, so kids with thiscondition can ski and go play.
There's this amazing kid thathas it in both legs.
That's a friend of ours that heis a karate kid.
I mean, he actually kicks withthese legs and chops blocks, and
(49:53):
so the leg actually hardens andbecomes strong, very strong,
just like the other leg.
It doesn't become a weak leg.
What you do see, though, is asmaller leg because you're
missing as Jeff might explainbetter than I can some of the
muscle and the tendons.
So if you look at her from thefront or behind, you will notice
(50:15):
that the affected leg, one thathas fibular hemimelia, is
skinnier and thinner in widthand diameter than the unaffected
leg, but she's okay with thatdifference and okay with the
scars from the surgeries, butwhen she walks it'll be a
functional pain-free.
Speaker 2 (50:36):
That's fantastic.
Speaker 3 (50:37):
I love that.
Speaker 2 (50:38):
It's so often too we see, especially in adults, not
usually with kids, but if you'vehad a place on the body that's
had multiple surgeries, they canhave a thing called chronic
regional pain syndrome.
That can happen from that, andso to have her be basically
pain-free after this really is amiracle.
Speaker 1 (50:58):
Yeah, seriously, Wow, this is such an incredible
story.
So are there any upcomingmilestones, dreams or other
things that she gets to lookforward to?
Speaker 3 (51:10):
Yeah.
So one misconception I think alot of parents have going into
the limb lengthening surgeriesis that they're going to miss
their childhood, that they'regoing to spend all their
childhood in the hospital.
I've heard that from someparents and that has been a
deterrent for them to chooselimb lengthening as a treatment
option.
(51:30):
That's not the case.
Kenley is a very vibrant andthriving second grader, I mean.
So she does theater, she doesart, she is very active and
involved in her church and soshe gets to live a normal
typical life.
Now people say, well, how doyou say it's a normal typical
life?
Now people say, well, that howdo you say it's a normal typical
(51:52):
life?
Cause she's having all theselimb lengthening surgeries.
It's not all the time, like itis every four years.
Every few years you have amajor surgery and it does get
you out of your typical routine.
But she goes right back toliving life and during those
surgeries we're still having funand living life.
It's not all misery, it's notall pain every day.
(52:13):
There's some hard moments, butthere's also some beautiful,
wonderful, happy moments.
So we are really enjoying justbeing a kid and swimming and
doing fun things like learningthe guitar.
She's playing the guitar andyou know it's just it's.
It's.
One thing is don't let themedical diagnosis or the the
(52:35):
upcoming surgery define the kidor just be the only thing that
they do.
You have to remember that theyneed other things to distract
them.
So we're really big on havingfun things planned and she was
in a pageant, yes, and so we dofun things like pageants and
trips and play dates.
(52:55):
A normal life, yes.
Speaker 1 (52:59):
Yes, that's what it's all about Just bringing that
normalcy back into her littleworld.
I love that.
If you were to leave ourlisteners with something that
could benefit them that may beexperiencing something like this
, what would you share with them?
I think?
Speaker 3 (53:18):
most of all is just going back to the little voice,
just being an advocate.
Just don't feel guilty forspeaking up, don't feel guilty
for asking questions.
I love that.
Just really yeah, trusting yourgut, because I think that makes
(53:39):
the biggest difference.
Fear holds some people back.
They don't want to speak up,they don't want to sound like
they don't know what they'retalking about.
But, like I said, you only knowyour child better than anyone
and if you don't speak up andadvocate, then no one will.
So I think, just really justspeaking up and not being afraid
and just being able to listento your instincts and your gut,
(54:04):
because it's there for a reason,right.
Speaker 2 (54:07):
I think that's really good and you know it's also.
I think, if I could add on tothat is just doing your own
research as well.
Speaker 1 (54:17):
I mean sometimes WebMD everything leads to cancer
on WebMD, so you have to be alittle bit careful, but doing
your own research.
Speaker 2 (54:28):
if you don't know or don't know where to go, then
talking to other people likeyourself that have been through
the situation.
That's really helpful forpeople.
So search, and almost everyphysician that does things like
this has a bank of people thatpeople can talk to.
So tap into those things.
Speaker 1 (54:51):
And you were able to talk to those people, right,
Courtney?
Speaker 3 (54:54):
Yes, I love what Jeff shared.
He just made me really realizewhat I wanted.
Another piece of advice istapping into that community.
Thank you, jeff.
That was actually one of mythings I wanted the listeners to
hear is how important thecommunity is.
So your friends, your family,your other children, your
brother, your sister, your mom,dad, they're going to support
(55:14):
you but they don't really knowwhat it's like to walk in your
shoes, because they're there tosupport you, because they love
you.
But you have to reach out toparents that have walked in your
shoes.
That's where I got a lot of mystrength.
And you're right, jeff, ask thephysician if there's any
parents that he can.
You know there's a supportgroup even or if there's any, a
(55:36):
parent or two that you can talkto.
It's so important to have acommunity of people that you
speak a different language.
You know the medical moms,medical dads, they just have
this.
It's like an unspoken languagethat they just understand, and
just to have that support frompeople is really big, is really
important.
Speaker 2 (55:57):
So definitely take advantage of that.
I'm going to put in a littleplug for family doctors right
here, because this is a spotwhere family medicine and
primary care can really shine.
Family medicine and primarycare can really shine.
I have people that are going tospecialists for everything you
can imagine, but I tell themthat if you don't understand
(56:19):
what they're talking about orthey've given you not enough
time to ask the questions, comeback and see me and we'll go
through the notes of the doctoryou saw and we'll try and figure
it out together, or I'll callit myself and get the answers
you're looking for, and thatadvocacy is something that
(56:42):
people take advantage of with mefairly frequently, and so
having a primary doc that youtrust is really helpful
frequently, and so having aprimary doctor that you trust is
really helpful.
Speaker 3 (56:57):
Yes, and I would love to speak to that is we used Art
Kinley's primary care doctor asour home base.
She was the one consistentthing.
It's so important to have aprimary care doctor that knows
your child, that knows yourfamily, that knows your whole
situation, because we werespeaking with specialists that
had just met us for the firsttime and it was so important to
have that sense of familiarityand to have that doctor really
(57:18):
truly know Kenley, her medicalhistory all the way through.
You know birth and beyond, andI would always go to her and ask
questions Is this right?
What are they telling me, isthis good for her, and should I
have her own supplements?
It was always going back to herand that gave me such a sense
of peace, just knowing that shewas in my corner all the time.
Anything Dr Paley or thespecialist would tell me, I
(57:41):
would always go back, becausethe primary care director always
has your child's best interestin mind.
They're loyal to you.
They're your home base.
It's ours, retired after 40 someyears and we were just
heartbroken because she was justfor all three of my children
for 20 years, amazing primarycare doctor, but it's just.
(58:03):
They're invaluable to thisjourney they really are and to
use those experts that know youand your family and because you
can go back and they can giveyou medical advice and questions
for the specialists that youdidn't even think about asking.
Speaker 1 (58:16):
Right.
Speaker 2 (58:18):
Yeah, and the other thing is is that we don't have
any financial or other biastowards doing these procedures.
It's like you know if there's abig procedure that a person is
considering.
I mean even some plasticsurgeries that are elective.
I have people come back afterthey've had their consults and
(58:39):
let's go through this, let'stalk about what they're going to
do.
You know, let's go through thisand make sure you don't need a
second opinion, or if you'recomfortable, did you feel
comfortable with that particulardoctor, or you know, or if
you're comfortable, did you feelcomfortable with that
particular doctor, or you know,things like that and help them
think it through just yes.
Speaker 3 (58:55):
What I like about primary care?
oh, go ahead, trisha I just say,they make everyone feel
comfortable yes, and and alsoabout to just point, like, what
I like about primary carephysicians is they treat the
entire patient as a wholepatient.
So when we go to thespecialists, they're just
looking at Kenley's bone.
They're just focused, fixatedon that area of their specialty,
(59:18):
their expertise, so, andsometimes they the specialist,
they're amazing in their job,but they forget the entire
patient.
It's a whole body.
There's other systems and sothat's why I really depended on
our amazing primary carephysician to look at Kenley as a
whole child and, even thoughwe're operating on her right leg
(59:40):
, how is it affecting all theother things?
How is it affecting her mentalhealth?
How is it affecting her goingto school?
So that's where the primarycare physician such as you is so
valuable, because they bringthat perspective, which is
really important, because somany people just focus on that
one area of the major surgeryand it affects the whole child.
Speaker 1 (01:00:02):
Well, you both are just two rock stars, that's all
I can say you both are amazingand I love that we talked a
little bit about.
You know here what Jeff does aswell, because that's his life.
So thank you for your comments,Courtney, and you know, just
(01:00:22):
highlighting those qualities infamily physicians because
they're important, yes,Especially to me, yes, indeed.
So, Courtney, just thank youfor walking us through this
chapter of your life with somuch honesty, strength and grace
.
We are so grateful you openedyour heart and for reminding us
(01:00:45):
that there was strength andsoftness, clarity and confusion,
confusion and power.
In a mother's intuition.
You've shown us the power ofasking the next question,
holding on to faith and trustingthose small voices that can
absolutely move mountains.
We're so grateful you sharedKinley's journey with us.
We feel so blessed to have hadyou on our show.
(01:01:07):
We just really are so gratefulto have you here today.
And for those of you listening.
I really enjoyed it.
Well good, and it's just beenso fun to get to know you.
We truly have just we've spentsome time off, you know, not
being recording, and we've justit's just been such a delight
it's so much fun.
Yeah, you're just a gem.
(01:01:29):
Well, thank you both.
Yes, and for those of youlistening, if you're navigating
your own journey throughrelational disconnect, emotional
pain or feeling like yourmarriage is beyond repair, I
want to invite you to explore myHealing Hearts program.
It's an eight-monthtransformational experience for
couples who are ready to rebuildtrust, connection and healing,
(01:01:52):
even when it feels like all hopeis lost.
I walk alongside you with tools, truth and the kind of support
that changes everything.
You can learn more by reachingout directly at
trishajamesoncoaching atgmailcom, and I would be honored
to walk with you.
And to our listeners, if you'rewalking through a hard season
right now, we hope thisconversation gave you hope and
(01:02:13):
direction.
And if you know someone whoneeds to hear Courtney's story,
please share this episode withthem.
And if you have a questionyou'd like us to explore on the
show whether it's about medicine, mental health, nutrition,
relationships, or just wantingto share your story and anything
in between again, or justwanting to share your story and
anything in between again pleasesend it to
trishajamesoncoachingatgmailcom.
(01:02:34):
So thank you so much forjoining us today.
Please be sure to subscribe.
We'd love to have you leave usa review and come back next week
for more meaningfulconversations and, as always,
stay curious, stay informed andkeep asking the right questions.
We'll see you next time on theQ&A Files.
Speaker 2 (01:02:51):
Goodbye everybody Bye .
Thanks, Courtney.
Speaker 1 (01:02:53):
Bye, thank you.
Thanks for tuning in to the Q&AFiles, delighted to share
today's gems of wisdom with you.
Your questions light up ourshow, fueling the engaging
dialogues that make ourcommunity extra special.
Keep sending your questions totrishajamesoncoaching at
gmailcom.
Your curiosity is our compass.
Please hit, subscribe, spreadthe word and let's grow the
(01:03:15):
circle of insight and communitytogether.
I'm Trisha Jameson, signing off.
Stay curious, keep thriving andkeep smiling, and I'll catch
you on the next episode.
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