The Q&A Files
The Q&A Files drops A Wellness Explosion
💥 BOOM! Attention Wellness Warriors. The game changer you have been waiting for is finally here. Say hello to “The Q&A Files,” where wellness meets revolution and your questions lead to new discoveries. Spearheaded by Trisha Jamison, your host, a Board Certified Functional Nutritionist. Cohost Dr. Jeff Jamison, a Board Certified Family Physician, and featured guest, Tony Overbay, a Licensed Marriage and Family Therapist. This podcast blends three diverse perspectives to tackle your questions on health, nutrition, medicine, mental wellness, and relationships. Dive into a world of expert insights and actionable advice, all sparked by your curiosity. Tune in, ignite your wellness journey, and join the Wellness Warrior community.
The Q&A Files
63. Doctor Google to Dr. Paley: A Mom's Medical Detective Story
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.
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 lifestyle practitioner, ready to lead you through a world of health discoveries. Here we dive into a tapestry of disease prevention, to nutrition, exercise, mental health and building strong relationships, all spiced with diverse perspectives. It's not just a podcast, it's a celebration 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 to a brighter you. Welcome, wellness warriors, to another episode of the Q&A Files. I'm your host, trisha Jameson, a functional nutritionist and lifestyle practitioner and a life coach, and, as always, I'm joined by my co-host and husband, dr Jeff Jameson, a board-certified family physician. Hi everybody, yeah, so every week on the show we bring you the stories that move us, teach us and help us to rethink what it means to be well from the inside out, and today we're sitting down with someone who has walked one of the hardest and most meaningful journeys a parent can face. I met Courtney Brown in Tony's group, and she's come to several of my classes, and so we've been able to have a lot of discussion time with herself and with Jeff, and we have just really had so much fun getting to know Courtney.
Speaker 1:Courtney is a dynamic, accomplished leader with more than two decades of experience in executive leadership, healthcare administration and public health research. She works in healthcare supporting leadership in a national organization that focuses on family medicine, where she plays a critical role in strategic initiatives and national healthcare collaborations across the US and Canada. Her career includes leading large-scale research efforts, coordinating NIH and CDC-funded public health programs and managing executive operations with grace and heart. But beyond all of that, courtney is a mother, a creator, a plant and food lover and someone who brings faith and strength into every part of her life. She's a mom to three amazing daughters, two lovable for babies, and she lights up when she's in the kitchen creating new recipes, something we both love.
Speaker 1:So today's conversation is very personal, it's powerful and it's one that we will all resonate deeply with because so many of you are mothers. But before we dive into Courtney's story, let's take a moment to celebrate. It's a tradition here on the Q&A Files and with my clients. It's a way for us to pause and recognize what's going well in our life, big or small, and today we get to include Courtney in this journey with us, on this part of our show. So what is something that you, jeff and Courtney, would like to share, what celebration you'd like to share today?
Speaker 2:Okay, I've got one real quick. It is a beautiful day here in Spokane, washington. It's 75 degrees clear skies, and I got up in them with the airplane and did some flying around today, so that was really fun, and I'm excited to say that everything landed perfectly too.
Speaker 1:That's always a good thing. Love hearing that. Thank you, Courtney. Do you have a celebration for?
Speaker 3:us? I do, and first of all I want to say thank you for having me and thank you for that very kind introduction. A celebration for me would be something that just happened on Saturday of this past weekend, and that is, my daughter, who I will talk about in a moment, was in a pageant called the Pageant of Hope and she won a really special title and it was a wonderful opportunity to just see these kids of all abilities and special needs just really shine on stage and it was a lot of fun. As a mom I was really proud of that.
Speaker 2:Oh, that's really fun.
Speaker 1:That is so fun. I'm so glad you shared that. What a great start to the things that we're going to share about your story. And so my celebration is just kind of what Jeff said We've been in the 40s, 50s, and so my celebration is just kind of what Jeff said it's we've been in the like forties, fifties, and so today, with 55, what we skipped right past the fifties. Yeah, we did. We haven't had many fifties.
Speaker 2:Yeah, it's been forties, thirties, forties, thirties, forties and then boom.
Speaker 1:And then it's 75. And it you know, I was wearing shorts. Today. I went for two walks. I'm like I'm enjoying this weather to the fullest, because tomorrow is supposed to be in the 50s and rainy, and so I just thoroughly enjoyed this beautiful, beautiful day. This is the beginning of our spring, but sometimes it teases us because what we like to say that every 15 minutes in Spokane the weather changes. So if you don't like what you have outside, just wait 15 minutes, because you'll usually get something else.
Speaker 2:So true.
Speaker 1:Anyway, thank you both of you for sharing your celebrations. Okay, so, courtney, you've lived in many different chapters in your life executive leadership, public health, family medicine, advocacy but nothing prepares you for the chapter titled my Child has a Rare Diagnosis. So let's start with Kinley's story. You didn't find out after birth. You actually learned something wasn't right during your pregnancy, and there's something about hearing that kind of news while you're still carrying your baby. That is supposed to be such a tender time. What kind of information were you given? Did they explain everything clearly, or was it a swirl of uncertainty?
Speaker 3:You're so right. It's supposed to be a very tender and joyful time. But my world completely changed the day I was getting my ultrasound. I was 20 weeks pregnant and typically that's when mothers get the gender ultrasound. They do the anatomy scan and things like that. So we had cheated a little bit and we had already known she was going to be a girl because we had some genetic testing. So we weren't really there to find out if she was going to be a boy or girl. We were really there to just find out the anatomy and if it was normal. So we found out in that scan that she was missing a right fibula bone and it was just missing. And they didn't really know what the diagnosis was. They just said they couldn't see it and that the tibia bone that was there was measuring smaller than the unaffected leg.
Speaker 2:Okay, and for people, first of all, the fibula is the bone that is on the outside of the leg and the tibia bone is on the inside of the leg. The tibia is the one that carries most of the weight and the fibula is an important bone for stability of the lower leg.
Speaker 3:See, I wish I even had Jeff there. I didn't have anyone there to even explain those things to me that day. It was just silence. I don't see a bone, don't see a fibula bone, and then I was just. I left and went home and started Googling and researching it.
Speaker 1:Yeah, okay, so can you take us into the moment when everything shifted? What were you feeling and how did you begin to navigate what came next?
Speaker 3:So everything shifted that day very rapidly. It became I'm now going to become an expert in whatever this condition is and I'm starting from scratch. So I just Googled the words missing fibula bone. I remember distinctly being led to a website that specialized in kids with missing limbs and it was actually an orthopedic institute out of state located in Florida. And as soon as I clicked on that I saw children with metal devices on their legs that I had never seen before and they look like they had something on their leg. To me it was very scary and barbaric looking at first.
Speaker 3:I had never seen any kind of limb lengthening on a child, so that frightened me and scared me and I had no idea what I was looking at. First, I had never seen any kind of limb lengthening on a child, so that frightened me and scared me and I had no idea what I was looking at. I had never heard of limb differences, I've never even heard of missing fibula bones, and so then I got on that webpage a lot of education. It actually set the title of the diagnosis for the first time. So it wasn't my OBGYN that diagnosed it, it was actually. I found this website and sort of made an educated guess that this was called fibular hemomelia.
Speaker 1:So what did your OBGYN tell you? They?
Speaker 3:actually said it looked like clubfoot and they told me that we did have a Shriners Orthopedic Institute in our hometown and that they just referred me to see them as soon as she was born. But they could not give me a diagnosis. She said she had never seen anything like it before but said on the ultrasound her foot was in a right, 90 degree right angle and they just assumed it was clubfoot. But just based on what I had read on that orthopedic website about limb differences, I read that it was much more than clubfoot.
Speaker 1:Okay, now I want to talk about the incredible turning point when you found Dr Paley. This wasn't just a casual Google search. There was prayer, intuition, persistence. How did you find him, and what made you decide to reach out to him personally?
Speaker 3:Well, this picks up right after getting that diagnosis of maybe a clubfoot or a missing fibula bone. You know, when I did Google and find the Orthopedic and Spine Institute, that was Dr Paley's Orthopedic and Spine Institute, so I recalled that he was a good source. So I recalled that he was a good source. I think I read during my 20-week ultrasound that he was the top expert in the of publications and he had a lot of good diagrams and pictures and what I appreciated about is he had patient stories so I could click on pictures and read other kids. So the story really took a major turn when I had this knowledge from pregnancy.
Speaker 3:But Kenley was born and I took her to Shriners, like my OBGYN had referred me to. She said I really recommend you going to Shriners and she said we have top specialists there and there's a specialist there who's been treating kids with her condition. And so when she was three months old I took her to Shriners and at six months old I took her back and at nine months old. So I went three different times and we saw the same orthopedic surgeon and during all three of those visits, which were very emotionally hard to sit through and listen, we were told her dad and I were told all three times that she had such a severe case of fibular hemimelia that we had to amputate and that we should amputate, and that limb lengthening really wasn't even an option to discuss, that it would cause her just a really hard childhood, and that there was no guarantee she'd even walk with those surgeries. So they were really encouraging me let's hurry and get this scheduled, because we want to amputate before she walks.
Speaker 2:That sounds really discouraging. I just wondered how did you feel when you had that decision thrust upon you.
Speaker 3:It was like someone punches you in the gut, it just yes.
Speaker 1:Before you get to that, I just hold on to that thought. So now you didn't know about Dr Paley until later, so it wasn't in when you were still pregnant. So it was like nine months when they were telling you Okay, yes, so sorry, no, please share what you definitely asked.
Speaker 3:I have never talked to Dr Paley or even reached out. I just used his website as my source of education and knowledge about this condition she might have when I was pregnant. I didn't reach out to him until a year later when.
Speaker 3:I had scheduled the amputation surgery. So after those three appointments at Shriners and consulting with this orthopedic surgeon and looking at x-rays three different times, I remember at nine months of age she handed me a box of tissues because I was sobbing at this decision and, to answer Jeff's question, it really felt like someone's punching me in the gut, like my heart just sank when they just said you know, this is your only option for her to have you know, a fulfilled, successful life and she's not going to be able to really walk and if you, she didn't.
Speaker 3:Really, I felt like the physician was one side of she was really pushing and advocating for amputation, rather than giving me all the facts to for me to make the best informed decision. I felt like she was really trying to persuade me and so I listened to her. It is, and I looked at her as an expert in the field and so I did schedule it. I thought, well, I've been to you three different times, the information has not changed. I trust you as a healthcare professional. I'm going to go ahead and schedule it. And so I scheduled the amputation surgery for April 30th of 2018.
Speaker 3:And Kenley was 10 months old and they said as soon as she starts pulling up and we all have had those moments, those milestones, when our infants are learning to cruise and they pull up on the couch or the sofa table, and that's when you celebrate. Well, I was dreading that day because I knew that's the day I have to call Shriners and we have to schedule the amputation. So it was like I want you to grow, but I don't want you to grow up, because then we have to do this hard thing that's gonna really change. So it was hard, but I did it. I didn't think there was another option at that point.
Speaker 2:Did they give you any rationale about why, at that particular time, when she started to cruise, that it was the time to do an amputation? Why not before that, or why not after that?
Speaker 3:That's a very good question. They typically like to do amputations for kids with limb differences before they take their first steps. The philosophy behind that is that when they do take their first step it'll be with their prosthetic leg. And those kids thrive. They start walking within days with the leg and it's just becomes natural because they don't know any different.
Speaker 3:And I knew deep down in my heart, you know, with Kenley having a prosthetic leg she was going to have a wonderful, successful life. I even met with an amazing amputee who was so wonderful and just gracious with her time to come over to our home and teach us about amputee and prosthetic legs before I met Dr Paley. So I knew that if that was God's plan for her life and we were going to go in that route of amputation, we were going to make that work for her. But I couldn't ignore this little voice inside me that kept just whispering to me and nudging me to listen to my instincts and get a second opinion. So I scheduled the amputation surgery for April 30th and six days before the amputation surgery that little voice got stronger and stronger and it kept saying second opinion because I had not, you know, been outside of the Shriners Hospital facility. I had not talked to any other experts, I had just Googled Dr Paley. I just read some things on his website. I've not reached out to anyone.
Speaker 3:So I decided that I was running out of time. It was six days before the amputation, so I just Googled Dr Paley's email address again, went to the same website that was my source of knowledge for that year before when I was pregnant, and luckily he had his email on there and I sat there and I poured my heart out.
Speaker 1:Yeah, I was just saying. So what did that first exchange feel like? Did it give you immediate hope, or were there still doubts and unknowns you had to hold onto at the same time?
Speaker 3:Wow, that's such a good question, tricia, because I truly feel that April, april 30th, will always be etched in my heart forever as a special day that changed the trajectory of Kenley's life forever and changed our lives as her parents forever. It was like that first email sentence that said Courtney, comma, I can fully correct Kenley's leg so she can run, jump, walk and play. That will. I'll never forget the impact that had.
Speaker 3:When I read that that day it was the sense of peace came over me, that I trusted my instincts, but also that I said a prayer before I wrote the email and I've said God, if this is your will for her life, to have the amputation, I will show up Monday and do that as planned. But if it's not, I pray over this email that you know Dr Paley will close the door for me and that'll give me confirmation to do the amputation, or maybe he'll see something and that'll open a new door for another avenue, another treatment plan. So I was just willing to trust God that this second opinion was going to either, you know, confirm that I was doing the right thing or give me another option. And that's what it exactly did. It just truly gave me another option that I had not even thought about or even thought was possible. So Dr Haley says he makes the impossible possible and he does.
Speaker 2:When you sent that original email? Did you send images with that email of her x-rays or how did you get his attention?
Speaker 3:Yes, Jeff, you always ask the great questions as a physician because you always think about the physician's perspective. And I thought about that. To get his attention I need to attach the x-rays. So I did that. I put all the x-rays from Shriners in that email and I think that's what actually helped me get a quicker response. Yes, because he was able to look at those. And in that same response email back he said I've looked at the x-rays, I can do this. She actually has five toes and I have operated on kids with two and three toes.
Speaker 1:So why was that actually so? Why was that so important?
Speaker 3: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 even put in the email I have had great outcomes with kids with two to three toes, but now that Kenley has all five, he said just imagine what I could do with a perfectly formed foot.
Speaker 3:So, another thing about fibular hemimelia is that it doesn't just mean the bone is missing and the leg is shorter than the unaffected leg. It also causes deformities in the foot and the ankle and sometimes the knee. So Kenley's foot was a perfectly formed foot with all five toes. So he was encouraging me not to amputate because he said I can work with that. It gives me a lot more to work with.
Speaker 1:Oh, I love this. So we often talk about these moments as fate or divine intervention, and I know faith plays a big part in your life. So, looking back, do you see that moment of finding Dr Paley as one of those amazing spiritual nudges that you were looking for?
Speaker 3:Absolutely. That's the only way I can describe it. It can't be described any other way. But it was God's voice and His footprints are all over this journey and he keeps showing up and showing me how he's here and how he's with us. And I pray that I will keep walking through the doors, lord, as long as you keep opening them, I'll keep walking through and he keeps opening those doors. He made it possible, he worked out so many obstacles to get us to Dr Paley's Institute, but it was truly taking a moment to listen and to trust your gut and trust your faith, because there's a lot of uncertainties in this medical journey. You know God didn't promise that 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:I love that. So, as things move forward with Dr Paley and his team, what was the decision-making process like leading up to the surgery and how did you prepare Kinley and yourself for what was ahead of you both?
Speaker 3:Well, this journey is definitely not a sprint, it's a marathon and he's very upfront that this is not a one-time done. This is a long-term process that will yield great outcomes in the end. But in the beginning you're going to have to endure three to four major surgeries. So we knew the timeline was going to be operations at age two, four, eight and 12. And he was very upfront and very transparent about that at that first initial consultation. That laid out the timeline for us and we were able to make the best informed decision based on what we thought was best for Kenley.
Speaker 3:Kids with this condition. It's not always the best thing to lengthen their limbs. It may be best for them to amputate, because each child's case severity type there's also four different types that Paley classifies on his website. So you have to take that in consideration too, that it's just not the same answer for every child. So when we were presented for her case, for her severity, for her special type of this condition, this is what we recommend for different surgeries throughout her childhood that to me was relief, but also mixed with some grief there, because it was relief that I had a plan and I knew the outcome was to equalize her leg lengths, but grief and the fact that she has to go through this and it's a lot on a child.
Speaker 3:So to answer your second question on how to deal with that, I think it's so important to really think about the child's mental health. It's not just about the medical appointments and the actual surgeries, it's the physical. It's not just the physical toll, it's the mental and the emotional toll, and so I'm really a big advocate for having the child be part of you know, child life specialist, like have a child life specialist there to have a child psychologist. That's what Kenley has now a wonderful therapist that she talks to about her fears of upcoming surgeries, but really just prioritizing how they feel about it and listening to them and letting them advocate for their selves too and their bodies, Sure.
Speaker 1:Perfect. So I kind of want to go back to the time of surgery. Can you walk us through the day of Kinley's surgery? What was going through your mind? The first one, yes. What was going through your mind?
Speaker 2:as you had it, what was going?
Speaker 1:through your mind, had it over to the surgical team, and how did you anchor yourself in that?
Speaker 3:yes, we were staying in this amazing place that I call um, like a little slice of magic on earth. It's called the quantum house and it's part of a wonderful medical home on the property of a saint m's hospital where, and so we were there and we got up super early, and there are other kids that live in the home that were also having surgery that day.
Speaker 1:And how old was she right now?
Speaker 3:Sorry, 19 months old 19 months and so she can only say, you know a few words and she 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've ever done as a mom to hand your child over and watch them walk down the surgery corridor. The most amazing thing about the place we go to is that the child life specialist was my rock, because I handed her over and I trusted her as medical staff to take over, as mom basically, and calm her fears, and so watching her go down the hall with the child life specialist was hard, but also good to know that she had someone she really cared and trusted, but it was the longest wait of my life. Cared and trusted, but it was the longest wait of my life Every time someone opened the door.
Speaker 2:I jumped up to see if it was her.
Speaker 3:And then the day, the hour it was over and he, dr Paley, comes out and my best friend and I stand up and we're actually hanging on to like any word he says and he says her foot and leg are straight. You know her ankle. He basically the very first surgery was taking her deformed ankle because, like Jeff says, without a fibula bone you don't have, it's on the outside of your leg, you don't have an ankle, it basically don't have stability in that ankle. That's why the doctor initially thought it was a club foot. He took her ankle and basically made her one, the absence of her ankle and made her an ankle.
Speaker 3:That day and he told me would you want to see her foot straight? So her entire infancy she had a perfectly little foreign foot but it was turned to the side in a right degree, 90 degree angle. And so when I went back to recovery to see her, it was the first time I saw her little foot actually in the correct position and that was really special but scary at the same time to see her cooked, all the tubes and machines and and just not knowing how she was going to react when she opened her eyes.
Speaker 1:How long was surgery, that first surgery.
Speaker 3:It was about four and a half five hours, but from start to finish we were there eight hours. Because you have to be there so early for pre-op and get everything. It's a lot of prep time. And then when you have to stay about an hour and a half two hours in the recovery to make sure she's alert enough to go home. But the actual surgery was about four and a half five hours. It's called the super ankle, and then that was followed by. Three weeks later.
Speaker 3:After that soft tissue healed some, he went in and broke her tibia in a very specific place and applied the external fixator. That was the apparatus that would actually lengthen her bone over a period of 12 weeks, and that was successful. So that was probably the hardest surgery, wasn't the first ankle one? Because when you wake up and see this huge metal apparatus on your child's leg and it's going through 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 and a half year old child that opens their eyes and they see it. It could be very scary for them. So that was hard.
Speaker 1:Well, do you feel like, and was she in a tremendous amount of pain? She?
Speaker 3:was not because we had good pain management in the hospital.
Speaker 3:The staff was was wonderful and they did a great job. It was when we left the hospital trying to manage that at home without the nursing staff. And I'd say, if you can get through those three days in the hospital and over that hump and then get over the first two weeks of post-op, then it's pretty smooth from there. But it's that first two weeks the fatigue sets in, the fear of the unknown, it's the getting used to something foreign in the leg. It's very difficult.
Speaker 2:Did you have help for yourself during that time? Was it just your best friend or your sister that was there with you so you could maybe trade off? Or was her father present so that you guys could get some sleep and be able to care for her?
Speaker 3: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, my best friend, my sister, and then her dad, and I would trade off. So I'm primarily the one that stays in the hospital because at her age, at 19 months, she wanted mom all the time I had to lay in hospital with her and sleep with her.
Speaker 3:But as she got older like the second surgery and certainly this coming summer her dad's going to spend more time. But I relied on other moms in the home. I relied my own mom, my older daughters. It takes a village and sometimes it's hour by hour, not day by day. It takes a village and sometimes it's hour by hour, not day by day. It's hour Like can you come and sit with her for an hour so I can just go take a shower, or I can just go get something to eat or a walk outside the hospital and get some fresh air.
Speaker 3:So I have a wonderful village.
Speaker 2:Yes, Good thing you were able to recognize the need you had for those things, though.
Speaker 1:And be prepared for those.
Speaker 2: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:Yes, during COVID it was really hard because they limited us to just one parent. So we were in the hospital room for three days and I couldn't leave and that was vastly different than the first surgery where people were helping me. It felt very isolated and very just. You know, I couldn't leave her at all and we had to. It was just hard. So I really appreciate having my tribe, my little village around me. Um, that will support me, bring me food and, you know, let me just go take a walk. It's amazing what some freshmen do. Just go take a walk. It's amazing what some freshmen do Go get a shower.
Speaker 1:Yes, yes, oh, that's so good. As we know, recovery is such a layered process. You've got the physical, emotional and spiritual pieces and you just shared some of your toughest days and you had a lot of help during that time from your family and close friends. As the surgeries continued, did they get better? Were you able to kind of just ease your mind and recognize okay, this is just, this is the process we're going through.
Speaker 2:You knew what you were in for kind of thing?
Speaker 3:Yes, it definitely was. It got easier for me. I think it got easier for Kenley because she knew what to expect and it became familiar the people, the place. We go to the same place to get x-rays, the same surgery center, it's the same doctors, it's the same physical therapist she had since she was 19 months old. There's consistency there. What I feel it's gotten easier because we built a sense of community here, which is so important for her. I think it's also gotten easy for me because in the first surgery it's fear of the unknown. You really truly don't know what you don't know. But after you do it once and then you have a second surgery and it's the same external fixator that you have to clean and that you have to turn and lengthen her leg. It's, it's truly like riding a bike, Like we've done this before, we can do it again. She even gets very confident Like oh, I've seen this on my leg before it doesn't hurt.
Speaker 3:It became like she didn't even call it a boo-boo on her leg. She would point to a mosquito bite on the other leg and say there's my boo-boo. So it got easier for her. I knew that I was growing in this journey when God put me in positions to help others. I once was the one asking for help and guidance and advice and how to do this, how to clean this, what to do when they ask you this. But then God started saying you got this, and then I started. He put me in positions where new moms would come, newly diagnosed moms, first time surgery moms and I had already had a few surgeries under my belt and I was able to help them. So I thought, okay, this is working, this is giving me some confidence that I'm doing a good job. It's it's a very hard job, but it's giving me the confidence that this is the right path, and so I've been able to help other moms, which has been very rewarding for me.
Speaker 1:Well, I love that. Was there a specific moment, a milestone, where you felt your shoulders drop a little like, okay, she's really going to be?
Speaker 3:okay, it was putting on her first pair of shoes. I think you know I have three amazing daughters and my first two daughters did not have any medical challenges or issues and just buying a pair of shoes I took for granted. You just go buy them, you put them on their feet and off they go. Kenley didn't have that journey. Hers was very different. Her first pair of shoes didn't come. She was almost three years old after her first major surgery and after she went through physical therapy we put. I remember picking up those pair of shoes from the cobbler because they have to put a little lift on the bottom to equalize her leg lengths, and putting those on in the car in the parking lot.
Speaker 3:I just broke down and saw me and I took a picture, which is still on my phone, of a pair of shoes. Right, not just she's always just wore one shoe on the other side, but the senior child that has gone through all this surgery and learned to walk with a pair of shoes, that was that was like okay, this is this, he. His promise came true, god's promise that I will correct her foot through. You know, dr Paley promised I can correct her foot and he did, and that was confirmation. Wow, this is really in front of my eyes. A true miracle is happening and every time I saw her walk.
Speaker 3:It was a miracle for me.
Speaker 2:I am so grateful to hear that story, but I'm still curious on the doctor's side for a second. Yes, of course. So in order to stabilize the ankle, did he have to use some of the bones of her foot to be able to stabilize that?
Speaker 3:Very good question. So he actually did an osteotomy of the tibia which?
Speaker 2:is a hole in the tibia.
Speaker 3:Yes, and so he cut a piece a bottom off of her tibia. So he cut it in half first to lengthen it, but that the very bottom where her ankle is he cut and then he stacked these bones together like two blocks and put some hardware through there to stabilize the ankle in a plan of grade position. So it's basically, if you look up super ankle, he's patented that there's a super knee and super hip, which is basically the same thing, just in those other joints, but he's making a stable joint from that end. The bottom of the tibia bone became her ankle. So he just cut a little piece, stacked it.
Speaker 3:Of course this is a terrible way of 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 job than I could. But that's going to give you the stability. So it's not just with fibular hemolya lengthening the limb, it's giving them a functional joint that's affected too. So in this case she had the type of fibular hemoly that truly affected the ankle. Her ankle deformity was so severe that she would not be able to ever put her foot down flat on the ground unless he did this ankle revision surgery.
Speaker 1:Fascinating. Wow, that's just so fascinating what they can do anymore. I just wow, that's just incredible. Courtney, you've been such a rock for Kinley, but we also know it's a lot to carry. How did you care for yourself during this journey and were there moments where you let yourself break down? I know you talked about when he had her. You know was able to put on both shoes and you know that was such an incredible moment.
Speaker 3:and you're doing muscle massages and you're doing so much with her physically to get her to the goal of walking independently, that it's so easy for a caregiver, a parent in this role, to let themselves go and to pour everything into that child and really forget about taking care of themselves. So I was starting on that road and then I thought I can't pour from an empty cup. If I don't take care of myself and prioritize my sleep, my health, my diet, my well-being, then I'm not going to be able to help Kenley be successful. So I started to just implementing small little doses of self-care in those small moments in between doctor's appointments and those daily physical therapy appointments, and it looked like simple as journaling, a few sentence. It could be a five minute walk outside to clear my mind. It could simply be.
Speaker 3:I did this a lot, just sitting still in some quiet, peaceful moments and letting myself feel what I was feeling, not trying to just push it away, but just really sitting there. I wanted to cry and if I wanted to feel, you know, sad, angry, because you know this is, it's a grief process. You know you have a child with a diagnosis like this. You do go through a grief process. You have a child with a diagnosis like this. You do go through a grieving process. You grieve for them because it's something you can't control and you want them to have a typical childhood, without surgeries. But then you realize that's not the cards you were dealt and that this God has a plan, a plan for your life. But also it's hard to see your child be in pain. That was really hard for me so to get. Oh, I bet. Oh, it's so hard when she's crying 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 really uncomfortable, I had to step back and let myself cry and let myself grieve and know that it was okay to feel those moments.
Speaker 3:I helped a lot to write those things down, because everything comes and goes in waves. It's an emotional roller coaster. Some days you have strong days, some days you're at a low point. But I did a lot of just self-care. I continue to do that's important and find the joy in the little, small things. You have to find what gives you that joy, because sometimes your day goes by and you think back to yourself what did I do for me today? So I just have to really make sure this upcoming surgery, that I eat well, I sleep well, I do things like you know take a walk, or even I love things like hot chocolate, or just taking five minutes.
Speaker 1:The simple things. Oh, I love it Just doing something?
Speaker 3:simple things, the simple things.
Speaker 1:Yeah, oh, I love that, thank you. So how has this journey changed the way you show up in the world, whether in your relationships, your work or even how you mother your other daughters?
Speaker 3:It's definitely made me more grounded, more intentional with people. I think overall it's made me protect my peace more fiercely. Gosh, it's truly changed me. It totally changed my whole life, but it gives you a whole new perspective. It's allowed me to see the invisible burdens people carry. It makes me so much more empathetic to people because it opened my eyes to a whole other world population in our society that there's that don't really have a lot of awareness like. Now. I see it.
Speaker 3:Now I see people struggles in the, in the just the community that exists with special needs and kids that use mobility devices. It just makes me so much more empathetic to kids that have struggles like Kenley and just really makes me want to educate and bring more awareness to that space and normalize it. Because Kenley, you know to me she has a big story to tell, but she's also the first child and first kid in her school that has a special condition, orthopedic condition. So I look at it as we need to normalize and have more conversations about disabilities with children. So if they do go to school with kids like Kenley that has a brace on their foot or a shoe lift or is in a wheelchair or has a walker to walk on that there's nothing wrong with those children and a lot of people say what's wrong with you, what happened? And they automatically assume something's wrong. So I want to change that dialogue so it's made me a big advocate over anything for this space and bring more awareness for the kids with disabilities.
Speaker 2:Yeah, you always want to go. Hey, I you know.
Speaker 1:What really happened is I got a shark attack, or I fell down the stairs and my stairs and my mom hit me with an ax. Oh my gosh, you're right.
Speaker 3:We've come up with ideas. What do we tell? You know we've come up with the shark attack story. You know we we could try to come up with funny things when kids come up and say, oh, what happened to your leg? Well, she's very proud of those scars. But we were trying to come up with some fun ways of telling kids about her surgery.
Speaker 2:Yeah, some people ask me about this and I hit them with my leg and then this happened.
Speaker 1:Yeah exactly, but I bet that was kind of a transition for her to accept and appreciate that this is normal for her and help others appreciate that that's her as well and it doesn't define her, but it's something that she has you know.
Speaker 2:So, on that line, how is she doing in school and interactions with other kids and where is she there?
Speaker 3:Well, you know that was a big concern of mine is when you start school. How are the kids going to accept her? What are they going to say? Is she going to be bullied? All those things go through your mind. With the kids with special needs it's a big fear as a parent. So of course you can never prepare Kids are going to say what they're going to say without their filter, but you do the best job. You can never prepare Kids are going to say what they're going to say without their filter, but you do the best job you can in making sure your kid has that self-confidence. So I would practice with Kenley. So if we were out and I saw someone come up to her and ask about her leg, I would be there to listen and if she needed help a little bit when she was younger, I would help her along with the conversation. And then she got to where she was just able to just tell them oh, I had surgery, I was, I have a special leg.
Speaker 1:And we were very, very fortunate.
Speaker 2:Yes.
Speaker 3:Yes, I have a special leg. God made me different and we're very fortunate to have a school that's very supportive and that we haven't encountered any bullies. But I was very prepared for that and I still am. I don't mind curiosity. I don't mind questions at all Like tell me about your leg, why it would happen. But there's a difference between curiosity and asking questions and just plain out. You know being cruel and mean, so we haven't encountered that. So it's so cool to see her classmates support her. They will actually modify games and rules to help her. They know that she's not the fastest kid, so when it's her turn being the person the it playing, you know, chase they all. Instead of running, they all walk fast. So it's really nice how her friends just
Speaker 3:really support her and help her. Yes, and that's one special thing about having a community at the Paley Institute is that there's kids like her that have the apparatuses and the walkers and the wheelchairs and the shoelifts and the braces. So when she does go there she sees other kids like her and she doesn't feel like such a outsider or different. So that also helps her as well come to where she is the only one and gives her the confidence to just educate. Yeah, our goal is to educate and open minds about this limb difference, community and disabilities in general.
Speaker 1:Right. So what are you most proud of in Kinley and in yourself as her mom?
Speaker 3:Oh, first thing that comes to my mind, kinley, is resilience. Her resilience through all of this. She's gone through some major surgeries and each time she just smiles and just has this amazing attitude and this tenacity about her. I'm just so proud of her strength. I guess I'm proud of just following my gut and listening to God's voice and really just trusting and listening to my faith. I'm proud that I didn't let outside influences that can be so easy to listen to and ignore your own instinct in God's voice. I'm so glad that I listened to myself and that really changed her life.
Speaker 2:So is this next surgery coming up? Is this the last one, or is there one more after that?
Speaker 3:It'll be one more after this, so this will be number three of four, and so she'll be eight years old and we will have a surgery right after her eighth birthday this summer and then she will have this is the third tibial lengthening, and our goal here is to do about five centimeters of growth in that leg. And what's really cool is technology has changed, and that's what's so cool about the healthcare field is we have all these advancements. So in between her surgeries we actually have a new treatment option. Rather than the external fixator that she's had the first two surgeries, we're actually going to have an internal lengthening device. It's going to be a rod inserted in her tibia bone and then magnet will actually lengthen the bone this time rather than a manual.
Speaker 2:Yeah, An external device that stretches.
Speaker 3:Wow, yes.
Speaker 2:Rather than the external device.
Speaker 3:Right.
Speaker 2:I'm interested to see how that works. You'll have to send us a picture of what that looks like.
Speaker 3:Yes.
Speaker 1:It's truly amazing to see the x-rays. Yeah, you'll have to come back on and let us know, definitely, absolutely so. If a parent listening right now is facing something scary, confusing or uncertain, what would you say to them from the other side of this story?
Speaker 3: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 hard questions. Don't be afraid to advocate for your child. You're the only one that knows your child the best and listen to your gut Exactly.
Speaker 2:Well spoken.
Speaker 1:And Jeff, did you have a question?
Speaker 2:I did, but it escapes me now. Oh, I remember. After the fourth surgery, what is the prognosis? Do they expect that it's going to be back to or around the same length as the other leg and be able to have a basically normal gait and so forth?
Speaker 3:Yes. So the goal with limb lengthening is to achieve equal leg lengths, and so with each child it's different. So they take a measurement during that initial consultation and they have a formula to tell you. To achieve equal leg lengths it's going to take this amount of surgery. Some kids only need two surgeries, some needs three, some needs four, five, six.
Speaker 3:So with Kenley, she had such a severe form we knew we were going to have four. So the goal here is not perfection. We're not looking at the leg to be look quote perfect. We're striving for function and no pain, and so we don't have chronic pain now, which is amazing after all these surgeries. So we're looking for a functional leg that can walk without any chronic pain, with a normal gait. So we're looking for the foot to be in that typical plantar grade position, where that means that the bottom of the foot is actually hitting the ground, and we're looking as close as possible to get her legs equal. And so right now we are halfway there, so we actually a little bit more than halfway there. We've lengthened her leg a total of 10 centimeters, wow, and so it's just amazing to see her leg actually grow and is the bone just really nice and strong or is it still fragile?
Speaker 3:Yes, so it's great you asked that. That was a good question, Tricia. That was my question to Dr Paley. Does this compromise the bone? You know, every time you break it is it going to make it weak, and that was her dad's major thing. Is it going to be weak and then she kicks a ball at soccer? Is it going to, you know, can she still participate in sports? So Dr Paley told us actually in that first email that.
Speaker 3:Kenley will be able to participate in any and all sports, so kids with this condition can ski and go play. There's this amazing kid that has it in both legs. That's a friend of ours that he is a karate kid. I mean, he actually kicks with these legs and chops blocks, and so the leg actually hardens and becomes strong, very strong, just like the other leg. It doesn't become a weak leg. What you do see, though, is a smaller leg because you're missing as Jeff might explain better than I can some of the muscle and the tendons. So if you look at her from the front or behind, you will notice that the affected leg, one that has fibular hemimelia, is skinnier and thinner in width and diameter than the unaffected leg, but she's okay with that difference and okay with the scars from the surgeries, but when she walks it'll be a functional pain-free.
Speaker 2:That's fantastic.
Speaker 3:I love that.
Speaker 2:It's so often too we see, especially in adults, not usually with kids, but if you've had a place on the body that's had multiple surgeries, they can have a thing called chronic regional pain syndrome. That can happen from that, and so to have her be basically pain-free after this really is a miracle.
Speaker 1:Yeah, seriously, Wow, this is such an incredible story. So are there any upcoming milestones, dreams or other things that she gets to look forward to?
Speaker 3:Yeah. So one misconception I think a lot of parents have going into the limb lengthening surgeries is that they're going to miss their childhood, that they're going to spend all their childhood in the hospital. I've heard that from some parents and that has been a deterrent for them to choose limb lengthening as a treatment option. That's not the case. Kenley is a very vibrant and thriving second grader, I mean. So she does theater, she does art, she is very active and involved in her church and so she gets to live a normal typical life. Now people say, well, how do you say it's a normal typical life? Now people say, well, that how do you say it's a normal typical life? Cause she's having all these limb lengthening surgeries. It's not all the time, like it is every four years. Every few years you have a major surgery and it does get you out of your typical routine.
Speaker 3:But she goes right back to living life and during those surgeries we're still having fun and living life. It's not all misery, it's not all pain every day. There's some hard moments, but there's also some beautiful, wonderful, happy moments. So we are really enjoying just being a kid and swimming and doing fun things like learning the guitar. She's playing the guitar and you know it's just it's. It's. One thing is don't let the medical diagnosis or the the upcoming surgery define the kid or just be the only thing that they do. You have to remember that they need other things to distract them. So we're really big on having fun things planned and she was in a pageant, yes, and so we do fun things like pageants and trips and play dates. A normal life, yes.
Speaker 1:Yes, that's what it's all about Just bringing that normalcy back into her little world. I love that. If you were to leave our listeners with something that could benefit them that may be experiencing something like this, what would you share with them? I think?
Speaker 3:most of all is just going back to the little voice, just being an advocate. Just don't feel guilty for speaking up, don't feel guilty for asking questions. I love that.
Speaker 3:Just really yeah, trusting your gut, because I think that makes 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're talking about. But, like I said, you only know your child better than anyone and if you don't speak up and advocate, then no one will. So I think, just really just speaking up and not being afraid and just being able to listen to your instincts and your gut, because it's there for a reason, right.
Speaker 2:I think that's really good and you know it's also. I think, if I could add on to that is just doing your own research as well.
Speaker 1:I mean sometimes WebMD everything leads to cancer on WebMD, so you have to be a little bit careful, but doing your own research.
Speaker 2:if you don't know or don't know where to go, then talking to other people like yourself that have been through the situation. That's really helpful for people. So search, and almost every physician that does things like this has a bank of people that people can talk to. So tap into those things.
Speaker 1:And you were able to talk to those people, right, Courtney?
Speaker 3:Yes, I love what Jeff shared. He just made me really realize what I wanted. Another piece of advice is tapping into that community. Thank you, jeff. That was actually one of my things I wanted the listeners to hear is how important the community is. So your friends, your family, your other children, your brother, your sister, your mom, dad, they're going to support you but they don't really know what it's like to walk in your shoes, because they're there to support you, because they love you. But you have to reach out to parents that have walked in your shoes. That's where I got a lot of my strength. And you're right, jeff, ask the physician if there's any parents that he can. You know there's a support group even or if there's any, a parent or two that you can talk to. It's so important to have a community of people that you speak a different language. You know the medical moms, medical dads, they just have this. It's like an unspoken language that they just understand, and just to have that support from people is really big, is really important.
Speaker 2:So definitely take advantage of that. I'm going to put in a little plug for family doctors right here, because this is a spot where family medicine and primary care can really shine. Family medicine and primary care can really shine. I have people that are going to specialists for everything you can imagine, but I tell them that if you don't understand what they're talking about or they've given you not enough time to ask the questions, come back and see me and we'll go through the notes of the doctor you saw and we'll try and figure it out together, or I'll call it myself and get the answers you're looking for, and that advocacy is something that people take advantage of with me fairly frequently, and so having a primary doc that you trust is really helpful frequently, and so having a primary doctor that you trust is really helpful.
Speaker 3:Yes, and I would love to speak to that is we used Art Kinley's primary care doctor as our home base. She was the one consistent thing. It's so important to have a primary care doctor that knows your child, that knows your family, that knows your whole situation, because we were speaking with specialists that had just met us for the first time and it was so important to have that sense of familiarity and to have that doctor really truly know Kenley, her medical history all the way through. You know birth and beyond, and I would always go to her and ask questions Is this right? What are they telling me, is this good for her, and should I have her own supplements? It was always going back to her and that gave me such a sense of peace, just knowing that she was in my corner all the time. Anything Dr Paley or the specialist would tell me, I would always go back, because the primary care director always has your child's best interest in mind. They're loyal to you. They're your home base.
Speaker 3:It's ours, retired after 40 some years and we were just heartbroken because she was just for all three of my children for 20 years, amazing primary care doctor, but it's just. They're invaluable to this journey they really are and to use those experts that know you and your family and because you can go back and they can give you medical advice and questions for the specialists that you didn't even think about asking.
Speaker 1:Right.
Speaker 2:Yeah, and the other thing is is that we don't have any financial or other bias towards doing these procedures. It's like you know if there's a big procedure that a person is considering. I mean even some plastic surgeries that are elective. I have people come back after they've had their consults and let's go through this, let's talk about what they're going to do.
Speaker 2:You know, let's go through this and make sure you don't need a second opinion, or if you're comfortable, did you feel comfortable with that particular doctor, or you know, or if you're comfortable, did you feel comfortable with that particular doctor, or you know, things like that and help them think it through just yes.
Speaker 3:What I like about primary care?
Speaker 3:oh, go ahead, trisha I just say, they make everyone feel comfortable yes, and and also about to just point, like, what I like about primary care physicians is they treat the entire patient as a whole patient. So when we go to the specialists, they're just looking at Kenley's bone. They're just focused, fixated on that area of their specialty, their expertise, so, and sometimes 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 so that's why I really depended on our amazing primary care physician to look at Kenley as a whole child and, even though we're operating on her right leg, how is it affecting all the other things? How is it affecting her mental health? How is it affecting her going to school? So that's where the primary care physician such as you is so valuable, because they bring that perspective, which is really important, because so many people just focus on that one area of the major surgery and it affects the whole child.
Speaker 1:Well, you both are just two rock stars, that's all I can say you both are amazing and I love that we talked a little bit about. You know here what Jeff does as well, because that's his life. So thank you for your comments, Courtney, and you know, just highlighting those qualities in family physicians because they're important, yes, Especially to me, yes, indeed. So, Courtney, just thank you for walking us through this chapter of your life with so much honesty, strength and grace. We are so grateful you opened your heart and for reminding us that there was strength and softness, clarity and confusion, confusion and power. In a mother's intuition. You've shown us the power of asking the next question, holding on to faith and trusting those small voices that can absolutely move mountains. We're so grateful you shared Kinley's journey with us. We feel so blessed to have had you on our show. We just really are so grateful to have you here today. And for those of you listening.
Speaker 1:I really enjoyed it. Well good, and it's just been so fun to get to know you. We truly have just we've spent some time off, you know, not being recording, and we've just it's just been such a delight it's so much fun.
Speaker 1:Yeah, you're just a gem. Well, thank you both. Yes, and for those of you listening, if you're navigating your own journey through relational disconnect, emotional pain or feeling like your marriage is beyond repair, I want to invite you to explore my Healing Hearts program. It's an eight-month transformational experience for couples who are ready to rebuild trust, connection and healing, even when it feels like all hope is lost. I walk alongside you with tools, truth and the kind of support that changes everything. You can learn more by reaching out directly at trishajamesoncoaching at gmailcom, and I would be honored to walk with you.
Speaker 1:And to our listeners, if you're walking through a hard season right now, we hope this conversation gave you hope and direction. And if you know someone who needs to hear Courtney's story, please share this episode with them. And if you have a question you'd like us to explore on the show whether it's about medicine, mental health, nutrition, relationships, or just wanting to share your story and anything in between again, or just wanting to share your story and anything in between again please send it to trishajamesoncoachingatgmailcom. So thank you so much for joining us today. Please be sure to subscribe. We'd love to have you leave us a review and come back next week for more meaningful conversations and, as always, stay curious, stay informed and keep asking the right questions. We'll see you next time on the Q&A Files.
Speaker 2:Goodbye everybody Bye. Thanks, Courtney.
Speaker 1:Bye, thank you. Thanks for tuning in to the Q&A Files, delighted to share today's gems of wisdom with you. Your questions light up our show, fueling the engaging dialogues that make our community extra special. Keep sending your questions to trishajamesoncoaching at gmailcom. Your curiosity is our compass. Please hit, subscribe, spread the word and let's grow the circle of insight and community together. I'm Trisha Jameson, signing off. Stay curious, keep thriving and keep smiling, and I'll catch you on the next episode.
