Ep. 5: A List of Diagnoses




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Any diagnosis received for your child can be completely overwhelming and heartbreaking. In this solo episode, Madeline shares her experience learning about each birth defect her son has because of his rare genetic syndrome.

She also talks about the minimizing effects of spouting off lists of diagnoses, the crippling weight each new diagnosis brought, as well as the triumph and personal evolution she has seen in herself as a result.

Her son’s “list” includes: Dwarfism, cervical spine instability, no nasal bone, low muscle-tone, hearing loss, and vision loss.

Episode Transcript

Madeline Cheney  0:00  
"It's really really hard to, to watch your child struggle to breathe."

Hey, you're listening to episode 5 of The Rare Life. I'm your host Madeline Cheney and today I have a solo episode for you. Today I'm going to explain a little bit more about each of Kimball's diagnoses and his umbrella diagnosis for his syndrome. I'm really excited to talk more about Kimball and to explain about him and our experience with his medical needs and various birth defects.

Before I jump right into that, I am going to explain a little bit about the question of the month. The question of the month is a question that you get each month (hence the name). The first episode of each month, I will announce the new question of the month. At the conclusion of said month, I will compile all the answers that I get from you guys. This is a way for us to kind of collaborate together and some of them are like tips and hacks, and then some of them are just like, Oh, people say the darndest things. So, in both cases, they build our community. I'm really excited to see all these answers. So this episode is the first week of July, so I get to share our very first question of the month. It is, "What are your favorite appointment day hacks?" In other words, what are some tips and tricks that you have to keep the day moving as smoothly as possible? This might involve other siblings if there are any, it might involve traveling to appointments or tips about in home appointments, really anything and everything about appointment day hacks. So head to the website, therarelifepodcast.com to give your input. Thank you. I can't wait to read what you guys have to say.

So, let's get in to the episode. I am going to, again I'm going to talk about each diagnosis that Kimball has and how it has affected Kimball and our family. And a little bit about what it was like to receive each diagnosis. He has a little bit of a laundry list and I recognize that it may be a bit longer than your child, it might be far shorter, but this is just my experience. And so, I'll start off with Kimball's overall diagnosis, which is chondrodysplasia punctata x-linked, type one. It's a very rare genetic defect. He is one out of 125 known cases worldwide for that specific syndrome. And so there's very little research. It mostly affects his bone growth. And I will list out each of the diagnoses that it causes each of the birth defects. And, I found out after he was, I don't know, he was a year and a half. It was probably like six months ago, I found out that I am my genetic carrier for what he has. So that was a big blow that that will have its own episode because holy cow was not ready for that bomb. And so I will list off them off just so you kind of know where we're going with this. And then I will kind of dive into each one. And before I start, I just wanted to say a word about these lists. I've just been thinking about like, I don't know, when we just spout out lists of things like this. It feels very minimizing of each thing. And I think that's one reason I really wanted to go into each one because it's like, Man, I'm just listing these things off and so it doesn't sound like as big of a deal. They are! Each thing is a huge deal. I mean, like one of these things by themselves, you know, would be really challenging and its own--It's its own thing. And so whenever you have more than one oh my goodness, it's kind of it's kind of the worst. So I'm sure a lot of you guys relate with that. So, I am going to talk about these in order of appearance. In other words, in order of when we found out about them, and so he has dwarfism, cervical spine instability, no nose bone, low muscle tone, hearing loss, and vision loss.

So let's dive in first with dwarfism. That was the first thing that we--that the doctors noticed when I was pregnant with Kimball. I talked a lot about that in our preface episode. And so if you haven't heard that, that's a fun story. And so, he has dwarfism, which just means he is smaller in stature than the typical child, and he will be for his life. And they noticed that in ultrasound when they were measuring his long bones is what they're called, I found out. These are just arms and legs. When they were measuring those, they were pretty far behind and out of proportion with the rest of his body, like his torso and his heade. I think they're pretty average, but his arms and legs are a bit shorter. And he doesn't have it like super severe. I don't think dwarfism as far as dwarfism goes, I feel like there are some that you know, they are really, really short. In the very little personal research I've been able to do just seeing other kids with his specific syndrome. They're not like, I think, I don't know, I think the kid that I saw was about four feet tall. As a teenager, I think it was like four, four foot something. So that's kind of what we're like expecting. But Juston and I have small kids, I mean, like Wendy's been on like 20th percentile anyway, so I feel like we we make small and then he's extra small. And so he has really what that has caused is trouble with growth. And so he, even for his syndrome, he's actually been pretty low on the charts. He's not on the typical charts. He's, he was born on the charts. He wasn't born small. He wasn't premature. Everyone thinks that because he's so tiny. He was born on the charts and quickly dropped off them and he's been kind of following his own curve, but it's really been a struggle to keep him gaining weight. So right now at two years old, I mean, we haven't been to the doctor in a while because hashtag COVID-19, but I think he's probably getting close to 20 pounds. And that has been a big battle. So he, he's had plateaus, we've gone to GI doctors. Just really confused with why he wasn't growing and just try struggling with weight gain, I think is really stressful because it's just really hard to know what the culprit is. And it's just this innate desire of a parent to like feed your child and make sure they're growing. We even went to what's that called? Growth hormone doctor. And they tested him. He's kind of low on growth hormone. But anyway, we're just trying to make sure that like... like, I'm fine with him being small, I just want to make sure there aren't any underlying, you know, issues that we need to address. Anyway. Dwarfism. So he will be he'll always be small. And then, Okay, one more thing about that he will always be small. I have to say this is one of those things on this list of the are probably to us has so far been the least life altering. And I think it's just because it's not like this thing that feels dangerous, or doesn't overly affect his quality of life, at least yet, and so on. I have to say, right now, aside from the concerns about his growth, just making sure he's gaining weight, it's mostly just really endearing and super cute. I actually really like how tiny he is because he's like the size. I don't know, at this point, he's probably the size of like a 10 or 11 month old, but he'll be two soon. And I just think it's really cute. Yeah, well, I'm sure that will become a bigger deal to him when he's older. And so moving right along, is he after that, we also found out that once they were able to identify, you know, the genetic syndrome that they thought he had, which he did end up having, they told us that they sometimes have issues with spine, cervical spine instability, and so that it just kind of goes along, it's just the bone issues. And so just some of the bones just don't harden with his specific form of skeletal dysplasia, and so that's always been on the table, we're yet to find out really if his if other bones are not all the way hardened, I just don't think they have been watching that as carefully because it's just not as significant as his cervical spine. Because that cervical spine is you know, the back of your neck and it is in charge of keeping your spinal cord safe from compression. That's a really big that's a really big one that we worry about all the time. So he they told us that that sometimes comes along with it and I went ahead and had the vaginal birth even though most people have a C section I talked about that in my previous episode, but um, so yeah, we found out after he was born that he had cervical spine instability. It was kind of just up in the air and it seems like kind of an art more than a science to like, determine their cervical spine safety. We've had neurosurgeons following him pretty closely. And when he was in the NICU they did a lot of scans and they were like, Oh, we think he's okay with his spine. And then they, because they needed to know so they could do some surgeries and tilt his head back and away. And then later they came back, like nevermind, it's not safe. And so I'm actually going to do an episode all about that too, because there's a lot. There's a lot with his cervical spine. But it also made it so that we couldn't hold him for the first week of his after being born because they weren't sure if he was safe. And then when they determined he wasn't safe, they they had to create a custom made cervical collar for him and so we were waiting for that to be made. And then finally, I think it was eight days old and we could hold him and it was an ordeal he had to like always be wearing this big bulky, hard plastic collar every time we like, moved him ever so like he would just lay in the NICU bed and it was really sad because he wanted to be held that was one of his needs and he was full term. So he, you know really wanted to be touched and held and he really couldn't be very much for that first bit of his life and I ended up actually sewing him a cervical collar that got cleared by his neurosurgeon, which was one of the best days of my life, I was so proud of myself that, was so hard and that will also be its own episode. So stay tuned eventually not anytime soon, but I will do that and so yeah, that's just really his cervical spine instability has like changed the way that I-- I don't know, it's against my my natural tendencies as a parent like I really am kind of a lax parent. I mean, I'm like disciplined, but like as far as safety, I'm like If they fall, they'll learn and if something falls on the ground, they can still eat it like it'll build up their immune system. And so having a medically fragile child and especially with cervical spine issues, has been really interesting for me to kind of like all of a sudden be afraid for him to like fall. And especially because sometimes he won't be wearing his collar, like right after his bath or something, and we're switching out to a dry collar. And it's like this fear, like what if he just falls because it's--it's for him specifically if his neck or if his chin like touches his chest, it's called flexion. When it comes into that position, that is when it's really dangerous, and he could have compression and so that's just I don't know, that's always kind of hanging over us. The back of our minds like what if his cervical spine gets damaged because if it became damaged if his spinal cord were damaged, then he would be he could be paralyzed or die. And so really is a really heavy thing to have hanging over us. And so I have become a little bit more of a helicopter parent a little bit, still not still not part of my nature, but I have to be a lot more careful because of that. And so it's just kind of typical falls that could put him if it made him go into that position really quickly, it could get damaged, his spine. And so certainly when we're in the car, you know, we always try to make sure he's wearing it. Yeah, so that's a really big deal. We found that out shortly after he was born. That was, that was a lot. And then also, before he was born, we found out that he had no nose bone growing. So that was a really interesting one. I think that's one of the things that tipped them off. And for his specific diagnosis, because that's, I think that's pretty unusual. And so that has caused what's called nasal stenosis. And so that is-- It just means really narrow...like, nares--like nostrils, like the openings in your nose. And that oh my gosh, that's another big one. Like when we found that out in ultrasound, were like, oh, so like, he'll look different. Like that's our biggest challenge will be to help him feel confident. It's a cosmetic thing. No, that is a very functional thing. And we weren't sure how narrow his his airway would be before birth, because there's no way to tell in an ultrasound. But we did have like this big care team meeting with his current ENT surgeon and he, he told us he was like, we don't know how narrow it is. But that's a big deal. We'll have to intubate him as soon as he's born. And if that fails, then we will have to give an emergency trach which actually is pretty common for for these kids with his same syndrome. A lot of them end up having trachs to help them breathe. And we didn't he did not end up needing a trach which I'm really grateful for. Because I'm in circles enough with people with trachs to know like, that's a pain. Obviously, it's a wonderful thing that it's available to help our kids like survive and live and, you know, adds to their quality of life. But I'm just, you know, one more medical device. I'm glad we don't, we don't have to worry about but he has had a lot of issues with because of not being able to breathe as well. Because of his nasal airway being so narrow like he hasn't, he was tube-fed, for like the first year he was tube-fed exclusively. And he would take a little bit by mouth of milk, but he just, I mean, if you think about I mean, like, it's funny because I just never thought about it much before but like, if you can't breathe through your nose, then you can't drink a bottle or nurse because that's how they breathe while they're eating. And so, because it's just so it's so narrow in there, especially when he was really little and so he just wasn't able to breathe while eating and so you know, that was really hard to have a feeding tube and he had a an OG tube. I don't even know what that stands for probably oral something. But that is a feeding tube that goes actually in his mouth and down his throat instead of up his nose because his nose was so narrow and so we couldn't block off more airway for him. We attempted an NG once and he like was struggling to breathe and that was really scary and sad. But he had an OG tube, and then that g tube in his stomach later which was really great. And because of his nose, he also has had four emergency hospitalizations just because of a cold. These were all common colds congestion. But because of that he he would get so sick that he wouldn't be able to breathe because he was so congested and his nose is so narrow anyway and so that was all in his first year of life and I'm so grateful now he seems to have grown enough where like, that hasn't been as much of an issue like we haven't... I think it's been at least a year since we've been to the hospital as an emergency for his breathing and so that's been-- really things have settled down and I'm really grateful for that. Also, he's had three failed nasals surgeries. And so that's been it's just hard to open it up. It's such a rare thing that they're all kind of guessing and trying to figure it out. And he's also he's worn nasal stents, which actually a lot of children with cleft lip and palate I think are usually children that have these nasal stents, but they are just like these, these tubes that go in your in their nose to kind of hold it open, so that he can get more airway. And so we've done that--and those have been a nightmare trying to keep those in and he would try to pull them out and it kinda made it almost harder for him to breathe because of the big uncomfortable plastic thing in his nose. And we're kind of-- we're past the stents now and I'm really grateful because those were kind of the worst. And I don't know, with his nose, it really is. It's really, really hard to to watch your child struggle to breathe. I mean, he's not-- it's not very common that he'll be like literally struggling to breathe like where he can't breathe and get air. I mean, that's when we went to the hospital. But even now, I mean, he's just so narrow that like, just when he sleeps and just his normal breathing. It's super noisy breathing because he's just he has to work harder to get air and that... that breaks this Mama's heart, it's been...that's really sad to me. I don't it's really hard to hear that to hear him struggling, especially when he was really little. He was extra narrow and so that was... Yeah, his  lack of nose bone has been a really big deal in our family. And because of the stents he has had food aversions, too, so we're working with feeding therapy, I think that's why-- we don't really know why he has such an aversion to food, like he's so picky. And to get him to even put food in his mouth is a really big deal. So we're working on that. And then he also has low muscle tone, which causes delayed gross motor. So right now he's two, but he's still crawling, he can pull the stand. And that's pretty typical with with kids with his same syndrome, they just--they're low muscle tone just means that their muscles are weaker. And they just I mean, he has to work so much harder to do things that typical children can just do. Like when he was first born, I think for the first like nine months like he didn't put his legs up, like, you know, like, I remember Wendy like she did that right away like newborn, she had her legs up in the air when she was just laying on her back. But it took him a long time even to do that, that was a really exciting thing. He's worked so hard to get to where he is. He's just a fighter. I mean, he's like, weaker. But he's stronger because he had to, like, I feel like, you know, his little soul is stronger, because he had to work so much harder to do these things that are so much easier for other kids. And so, I mean, that one has been, you know, we know that he'll eventually catch up and that will be kind of a thing of the past, but that has been, you know, something that we've really had to work hard to help him hit these milestones with his physical therapist and things like that. And then, really another big one is, is hearing loss. So that one, we were totally unprepared for. It turns out that's even in the research. And it was, I feel a little a little bitter that they didn't tell us or warn us, I think somehow it just didn't happen. Maybe someone I don't know. Like, I think let it slip between the cracks or something because the wholeNICU team that came like the main doctor and everything like they knew, they said, Oh, yeah, like because he was higher risk for hearing loss, which we didn't know. And because of his syndrome, they went straight to an ABR which is basically a very advanced hearing test that they do typically after a newborn will fail the newborn hearing test. It's kind of like next level but they just jumped straight to that because of his higher risk for that. So I remember we were sitting in the NICU with the medical rounds where all the team was there and they were talking about Kimball and how he was doing and they kind of mentioned like, oh, and it looks like he failed his hearing test and he kind of like glanced at us and like, okay, yeah, we'll have audiology come talk to them about that. And then they just kind of moved on. And I was like, What did they just say? Like, I think at that point, it was just so much, like already I felt like it was just too much, I couldn't handle what we were dealing with right then. And so the idea of like, another huge thing to be added on to this list was kind of like it was almost comical at that point. Because it was ridiculous. I was like, there's no way. But sure enough, after they left, a little bit later that day, the audiologist came. So this was like I think, I think it was like nine days after he was born. So he had just gotten his collar and were finally able to hold him. And the audiologist for the hospital came in and she was like, Oh, hi, like, you know, Kimball failed his hearing tests and he tests-- and they pull out these floating all the audiogram where she showed us, you know, where he was on there and his hearing loss levels and how he was testing profoundly deaf in his left ear, and moderately severe on his right. And she explained a bunch of stuff and kind of talked about cochlear implants and how that might be an option to help him hear. And I mean, it was kind of a blur. She just explained how they would repeat the test the next week to kind of check on that and then she left and she was really kind about it, but it was just like I said, it just felt like almost comical, like, there's no way there's something else added. And so I remember just being like, well, I guess we'll learn American Sign Language like, just kind of like, okay, like, here we go, like add this on. And I remember finding out, I was like, sitting there right after she left, and I was like, This sucks so bad. And then I looked down at my phone, and there's little notification. It was like, Oh, your grandma just died. I was like, well! It like... that was probably just like the... I couldn't even deal with that right then, but I mean, it really was a terrible day. And that diagnosis was really hard and I think because it was hard to know how we would even like go forward with his life and it just... there was already so much. And hearing loss is one of those things I feel like that in and of itself. I mean, that's a really big deal. Like that's a very life altering thing. You have to be really proactive with to help them and so that-- I really grieved that one and it was so unexpected. And so as we drove home that day from the NICU, I just sobbed. I was like I was full on grieving, it was so devastating. And I know that like, you know, there can be a wide range of emotions, finding out your child has hearing loss and so like I even heard about parents who are really excited to find out especially if they also have a hearing loss. But for us it was totally and completely overwhelming. And I was really sad and I think like a double whammy to that just made it that much more...I don't know, painful. Was that like I would--we were in the NICU, I would talk really softly into Kimball's left ear, that was just the side of him that was furthest from the NICU nurse and I just felt like I wanted privacy or whatever. So I wanted to talk to him on that side, and I talked to really quietly and so kind of, I don't know that realization of like, he couldn't hear anything. And that was kind of my way of feeling close to him, especially before we could hold him. And I just felt so sad. I felt so sad for him and for his existence and sad for me and for what it meant. You know, the extra... just extra worry added on and that was a really hard one. And he received his hearing aids the same day he got discharged from the hospital from surgery for his g tube, he went back later, I think it was three months. And on our way out of the hospital, we stopped by the audiologist to get his hearing aids and don't recommend that because that was like so overwhelming too. And at first we struggled a lot just to keep those hearing aids in. He probably had him in like a cumulative like 20 minutes for the whole day. Partially because he slept so much, but also because I was just so totally overwhelmed with everything else going on too. And now fast forward we are pros like that's just a part of Kimball and we love his hearing aids. He loves his hearing aids. We love his hearing specialist Angie, who will be on the show later. And we've--it's been a really big part of our lives because it affects his language development. And so and that's a really big, you know, big part of life. And so we've had to be really proactive with that. And we've had a lot of, he really plateaued for a while and just, he was really stuck. Like it took him a long time to really verbalize and then now he's doing great, like he's even caught up to typical two year olds that are hearing and so that's been really, really exciting. He loves communicating. Um, so now I mean, it's, I'm not gonna say like, it's all better. But like, we got this like, I think initially was, you know, that was really hard. But now I've really settled into this community and there's even like a sense of pride that comes along with this hearing loss. I think it's just because the community is just really tight knit and there's this real sense of identity with having a hearing loss. But um, yeah, I don't know, I really don't know that I would say like, oh, if I could fix his hearing--I mean, I don't know what I would do, because I guess I never really thought about it because I can't. But like, I've really come to terms with that one, and I'm really at peace with it. And I think it's just part of what makes Kimball Kimball and it's just really cute. He's got these cute little hearing aids and we've met a lot of really great people through that. And then his vision loss last but not least, that one came a lot later. He was nine months old before we had our suspicions confirmed about his vision loss. And that one is not in the research for his diagnosis. But we did a little bit of personal research and it looks like it should be in the official research because that sounds like a thing. But he from, I don't know, from the very beginning, he was just very, very attracted to windows and lights, which I remembered with Wendy that's very normal, but like, he never looked at our faces. And I kind of kept waiting for him to start doing that. And I kept kind of bringing it up to early intervention. Actually, with Lisa, who you just heard, I kept bringing it up. I was like, he's just he's not looking at our faces. And they were like, It's okay, he's still kind of recovering from being in the hospital. I'm sure he'll, you know, come around and let's just wait. But finally, when he was nine months old, and I brought it up again, I was like, Guys, he's still not looking at our faces. Like he only looks at windows like we just can't get him to look at us. Because he would kind of like--his eyes would kind of like technically at us, but I could tell he wasn't seeing us like his eyes just kind of brushed over our faces. And, they were like, Oh, yeah, that's, that's concerning. Let's get him in. And so we had an appointment with a pediatric ophthalmologist and I remember at first he was like, Ah, you kid like, I'm sure nothing's wrong. Calm down, like kind of like, oh, this first time mom (which I'm not a first time mom). But anyway, it was it was kind of like condescending. I was like, okay, like, I hope I'm wrong. I hope you're right, because I don't want anything to be wrong. But lo and behold, he checked his eyes and he has optic nerve hypoplasia, which just means that his optic nerve, the nerve that connects between his eye, and his brain is short, it's small. And he told us, there's nothing you can do to fix it. There's no surgery. No surgery that would correct it and glasses wouldn't do anything. And then he proceeded to tell us, so we asked him we're like so what does that mean? Like, what will his vision be like? And he said that people with optic-nerve hypoplasia, there's a huge spectrum. So they range from either being hardly affected and their vision like they can basically see and they're very functional all the way over to legally blind because of it. And so we left that office just feeling so crushed. I mean, it really is hard to explain. I don't really know how else to say it. It's just, it was so devastating to be like, there's another thing, there's another thing we have to worry about and that he has to deal with. Like it already felt like such a heavy, heavy list. Each time we'd get these diagnoses. It was just so heavy and so to have another one slammed down on us and at that time, we were really actively learning American Sign Language, because that was kind of the route we were going down with Kimball and we're like, What if he can't even see us like, he can't even see us then how is he going to learn this? And I don't know I know that there are there are a lot of ways to communicate with with people who are completely deaf blind but it was it was so so much. And just each diagnosis I just felt like I was like lifting these huge weights and I was standing, I was staggering, my legs were shaking. I was like, Okay, okay, I'm standing, I got this, like, I can survive this and then they'd be like, Oh, and guess what, he has this too, and slam and then they throw it on me, and I just like crumbled to the ground. I would stay down there for a while and just wallow like just feel so weak and so beat up. And then I would be like, Okay, I can do this and I you know, I would pluck up all my strength and finally be able to like stand again with my legs shaking even more this time and like, Okay, like I'm standing! and then another one like slam and like throw me to the ground again, because another weight would be thrown on there. And that just seemed like-- that's really the best way I can describe of how it felt to just keep getting diagnosis after diagnosis after diagnosis of these really severe birth defects. And so his vision loss really was a huge blow. It was a huge slam and I just felt I was really...I really struggled. That was a really hard time. Since then, though, so he also had kind of an unofficially diagnosed CVI which is which is a cortical visual impairment. So how they explained to me was that it's just like a huge preference for like, shiny and bright objects. And I think I mean, that's really related because that was a lot easier for him to see, that's what he would be able to look at and so he just, I mean, for the first, I don't know, year and a half, like that's really what he preferred, he would really look at windows and lights. And um, he's kind of, he's still obsessed with lights actually. So since then his vision has really improved. He's using his vision, like a pro, like, sometimes I forget that he has a vision issues. He also has a little bit of strubismus, where he has a kind of a crossed eye, or when an eye will kind of, you know, drift. So we're still working on that. It's actually really cute. But he has gotten so much better. And we're still not sure about how much he can see. That's the most frustrating thing about vision. There's not an ABR for that. Like, you can't test that. And so I'm not sure why but like, I keep asking like, well, what can he see and they're like, well, we'll just don't know. Like, we can't tell until he can tell us. But now it seems like it's more just like a contrast thing. So things that are lower contrast are a little harder for him to see. But he really is using his vision very functionally. And so we are really excited about that. And he's looking at our faces really well, he keeps eye contact super well, we have that connection. So yeah, so that really has kind of resolved itself. I'm sure that he'll kind of struggle with vision his whole life, but like, we kind of accepted the worst case scenario, probably because it almost seemed easier than having another letdown. And so we kind of just thought, like, well, he just won't be able to see ever. And so that has been a really, really pleasant surprise. And kind of going back to to like when he in the beginning when he wouldn't look at our faces. That's something that I really took for granted and I think most people do when your child can see, like with Wendy, that connection that you have, I mean, really, when they're little babies, I mean, what other connection do you have? Other than looking at each other and making that eye contact? I mean, that's really--I remember with Wendy that's like when I'd feel like Okay, what I'm doing is worth it. Like all this work is worth it because of that, like communication that you have when you look at each other. And so, not having that, that connection with him was really hard. It felt, I don't know, it just it really felt like a barrier to our connection. Because we didn't have that. And it made me really sad. I kind of grieved that too, like, he'll never see my face. That's kind of what I accepted then. And so I really have this empathy for parents who have children that really are blind, or really can't see their faces and maybe never will like I I've kind of gone down that path, although now it's resolved itself. So we're not we're not really still there. But I empathize. Like, that's hard. That's really hard. And I also want to put a little, I don't know, in conclusion, I guess. I don't feel like Kimball's diagnoses and birth defects define him per se, but they surely affect who he is. And I think in a really positive way, I don't I don't think Kimball would be who he is today, the sweet little I don't the strong little soul. I don't think he would be exactly who he is if he hadn't been through all of this and didn't have all of these hurdles to overcome. And I surely wouldn't either. And I know that's kind of more getting into like, you know, season two and I want to break any rules here but like, I don't know I... it really has changed me and it felt terrible. In the beginning, it felt like I was being beat up to a bloody pulp. But now that we're on our feet and his different issues have kind of stabilized more and that in combination with like, just the resilience that we've built, like I'm just a stronger person. I'm like, I feel so strong now because I've been through so much. And so kind of those combined like now he's he's only two but I have like I've really changed since then. And he's changed, he's changed our family and I don't know if i'm really at the point yet where I can say I'm grateful for for his birth defects, but I certainly respect them. And I love Kimbball and I love the way he is. I hate watching him suffer but I love Kimball.

You can follow me on Instagram at The_Rare_Life. I post about our family and sneak peeks into interviews coming up. If you have found value in this podcast, I invite you to donate. Just a few dollars are so appreciated. To do that head over to the rarelifepodcast.com. Join us next week for Episode 6. We have parent Emily Young, sharing The Story of Nora, all about her two year old with another form of dwarfism, achondroplasia. See you then!

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy