Ruby Raising Lexi

In this episode we talk to Ruby about her daughter Lexi who has Arthrogryposis Multiplex Congenita (AMC), a rare condition affecting joint movement. 
 
 We talk about:

• the early days of the diagnosis and navigating early interventions, 
• what her physical therapy and multiple surgeries have been like, 
• her teaching her daughter how to advocate for herself,
• and the challenges and triumphs of parenting a child with AMC.

Follow @amcsupport to learn more about the disease!

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Transcript

Rhandyl: Hey y'all, welcome back to Raising Disabled. We are going to catch you guys up on the last few weeks. We just like to keep you guys updated on our lives and What's been going on with us for the last few weeks? So Remi was invited to a NICU graduation party from the NICU here locally in Lubbock. She did not actually graduate from this NICU, she was transferred.

But I think it's Not even. I don't know, no. I don't think they do this annually, at least not at this capacity. So it was at a, Milestones Developmental Play Park and it's this really cool indoor play park. And we went and it was a lot of fun. Took both of the kids and there were so many people there. I was like, Oh my gosh, I didn't know what to expect, I guess. Um, , I mean, it's been eight years, so it was fun to see a lot of nurses and NICU staff that are still there that were there when we were, and our neonatologist was there and which I've seen her a few times.

Since, but right. It was really cool for everybody to see Remi. Of course she has no idea who they are, but they all know who she is. 

Yeah. They, a lot of them follow us on social media and her story and things like that. But oh yeah. I'm seeing her in person. It's probably most of them since she was like two months old.

So yeah. Been a long time. So that was fun. And she actually, I think I'd mentioned this in the last recap that we had the school district that Remi goes to, they call their special education program, their life skills program. And so this was their first annual life skills program.

skills field day. And so it was a lot of fun. They had, it was wild. They had it , at the high school and they had it out on the baseball practice fields and They bused all the kids to the field and they had all these activities and really fun little sections split up and each class had their own colored t shirt and then I think a lot of the high school kids volunteered which was really cool.

Yeah, it's like they had to come up with the activities And then help the kids and they would show them what to do and then they would help them through it and it was really cool to see them Interacting with our kids. Yeah. Yeah, I had so much fun Obstacles with Remi and she had a blast she It was when she figured out what was going on because she was like, what are we doing?

Like, where are we? I thought I was going home, but I feel like it's too early. Like why am I on the bus? And then I show up and she's like, okay., but it was really cool.

And she loved it. She was Chunking balls and frisbees and there was like a tunnel and she's a pro at crawling through those tunnels in yeah adaptive PE classes and so she was like I got this and yeah, and then there were some things that I helped her with in her wheelchair and Just, it was so fun and thankfully her nurse was with her and got some cute pictures and videos, but yeah, it was really cool.

it 

Deonna: on TV last night, I think, and so I was like, oh my gosh, everybody be quiet. We were looking for you guys, but we didn't see you, but, and that was neat how this No, there was a lot of people. There was, it was cool how the superintendent came out too. And I feel like Frenship does some cute things for those kids.

Even the Halloween thing that's coming up I don't know if Allie's going to get to go to that this year, but I mean, they just do cute little things. Things. This is a new fun thing. I love it. I 

Rhandyl: know. I really appreciated also, like the superintendent, he thanked everyone and that was so excited for the turnout and I was like, we'll just continue this every year.

This has been so fun. There was 

Deonna: more than one out there. That's cool. 

Rhandyl: That's neat. Yeah. It was cool. But yeah, what about you guys? 

Deonna: We really haven't had a lot going on. Dane was on nights and when that happens, it's just always crazy because you're living that single parent life for about a week and our nursing is starting to get a little more solidified right now, but it's still crazy.

So it was kind of a week, but Even, he got called out of town today and so I called my mom and dad and was like, Hey, can you come help me just one day? Because he's out of town. Like it just, when my parents are here, it feels a little more like, whew, you know, like I'm not the only adult doing everything, yeah. So they came and gave me a break. My mom watered my plants for me, which is like a job. Yeah, but yeah, I have way too many. I always tell people I'm like the Octomom with plants. Like I have way too many kids and , I don't take really great care of any of them, but I can't quit buying the plants.

So it's like ridiculous. But yeah. Yeah, we went and helped teach a Texas Tech class in the School of Nursing. And so that was fun. It was me, one of Allie's nurses, and then we pulled Cole and Allie out of school. And so it's just like this open ended question and answer thing. And so it was fun. It's kind of intimidating cause you don't have a plan or a speech ready, which I'm a very big planner.

I like to know what I'm going to say. So it was like, Oh my gosh, I don't know what I'm going to say, but yeah, they end up just asking us questions about what it would be like if these nurses got into home health or like just random questions about Allie's injury or diagnosis or care or whatever.

Nothing is really off limits. We talk about everything. And so. that's fun, trying to, just sort of, inspire the next group of graduates that home health is a possibility. Cause I know that's a problem. People don't think that. Yeah. So that's good. I'm glad that you're 

Rhandyl: able to do that.

Cause I feel like so many nursing schools , they're all so geared towards the hospital inpatient scenario, right? Especially right after graduation. And so I'm so glad that you guys went and did that. I feel like we need to get into all the nursing schools locally. 

Deonna: Oh, yeah. Oh, we should, for sure, but it's crazy because they didn't even understand some of them thought that I was paying my nurses cash.

Oh, wow. I'm like, oh, no I don't have the money to do that, but, agency, yeah. The one fun thing we did this week is one of our nurses told us that they were having a greatest showman sing along. And so me and the kids went and it was hilarious. , that's one of our favorite family movies.

We listen to the soundtrack, like we know every word to every single song. And so we went and did that. Like they had Favors, and it was like a theme. You were supposed to dress up, which we didn't have the stuff, but it was at Alamo draft house, which is just fun, but, oh, it was a good time.

 You watched the movie and it had the sing along words and we just sang every word and everybody was dancing. And it was just a fun party. I've 

Rhandyl: been to a city. Sing along there before and it, they go all out. It's so much fun. I heard a lot of people going to that one and yeah, we missed out on that.

Deonna: It's so stupid, but so fun. Yeah, we had a great time. They gave out 

Rhandyl: props and all sorts of fun things. Oh yeah, 

Deonna: . So yeah, we didn't really do a whole lot. It was just, just a couple of things, but good stuff.

Good stuff. But yeah. Yeah. So that's what we've been up to and we love this next episode. , I learned so much from Ruby. She's coming up next. And so, , we will just see you guys there .

Rhandyl: Not only do I transfer my own child in and out of her stander very frequently, I transfer my pediatric physical therapy patient in and out of their standers every day. And Zing standers are thoughtfully designed. Transfers in general are not easy, but Zing took care designing a standard to simplify the process as much as possible.

All Zing standards feature a comfortable transfer height, a supine flat to load position, all support and positioning options like swing away knees, swing away trays, open bases that work well for single person lifts or using a patient lift. Zing also takes into consideration the number of transfers throughout the day between different pieces of equipment.

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Deonna: Hey y'all, it's Deonna from Raising Disabled and welcome back. We're so excited today. We have Ruby Mosley on. She actually She is one of my husband's childhood friends and they used to be in the same youth group at church together and they used to go skiing together. And so she's one of his friends, but I've never met until today, but Ruby has been from day one of us starting this, one of our, Champions of this podcast and has answered every single question we've asked and just been the best contributor to this.

And so we're so happy that you're going to talk to us today. I remember when Allie first got injured, you, I don't know if you remember this, but like when something like this happens, you have.

Hundreds of people reaching out , but it's just so much. And I remember seeing this message from you, I saw it the other day when I actually was talking to you on here about this, but it was just so crazy because that was such a long time ago.

, it was like four years ago, and I remember that, interaction sticking out to me because I thought, okay, this person's reaching out to me and trying to tell me it's going to be okay.

Even though it does not feel like it's going to be okay right now. , but we're just so happy that you're on today. So do you want to just tell us a little bit about yourself so we can get started with you? 

Ruby: Absolutely. Yeah. I had forgotten that I'd sent that to until you reached out about recording and I was like, Oh my goodness, that felt so long ago, but I'm super excited to be here with you guys because when y'all started the podcast, it was like, The ability to reach out and just tell other people what the reality of our situation is and what's going on.

And when I saw that message, I remember when I sent it now is just the concept of, you've got to know that somebody else there out there knows what's going on for you and just really wanted to reach out because I had so many people do that for me when my daughter Lexi was first born of just giving that supportive.

We've been there, you'll get past it, everything will be fine. So yeah. So a little bit about me. My name is Ruby Mosley and I have a 10 year old daughter, Lexi, and she has a condition called arthrogryposis multiplex congenita. AMC for short, so we'll just call it AMC, but you can't use hashtag AMC because then all the theaters get tagged.

We've been that lesson a few times. That's funny. So she actually has a genetic variation of arthrogryposis called Escobar syndrome. Hers is a autoresomal autosomal recessive genetic condition, which means that both parents had to have the gene to pass down to her. I learned way more about genetics after she was born than I ever did in science classes or anything like that, but yeah, she has a even more rare variation of arthrogryposis.

Deonna: Oh, man. Yes. That is such a long word to have to learn, and I've, and you have to learn it like in the first week or so. It's the 

Ruby: worst. Yes. She finally learned how to spell it when she was about eight and a half, almost nine, and she was like, I can spell it finally, and I'm like yes, you can. So that was like a big accomplishment for her.

Deonna: That'd be a really big accomplishment. I don't know if I could learn how to spell it. So that's awesome. 

Rhandyl: Yeah, , you , mentioning the genetics stuff, , we've been down that rabbit hole before and it's, yeah, it's nuts. , I had zero interest in it in any of my classes, in college or anything like that. It just didn't. And then of course, whenever it hits you like a Mack truck, then you're like, okay, I should have probably listened a little better. 

 I feel like I'm almost medically certified at this point.

Rhandyl: I know, I believe it. That is crazy. 

Okay, so tell us about the time leading up to finding out that your child Lexi had the medical issues. Was it something that she was born with or was it a sudden onset?

Ruby: So we have a Part A, Part B to our story. Part A was the arthrogryposis piece. We knew after my 20 week ultrasound that something was going on. They did an amnio that day. We're testing for all of these different things. I was monitored throughout the rest of my pregnancy, but nothing ever really fit. So between The fetal maternal specialist and my OB, I was getting scans every week. So I've got plenty of growing pictures that most moms don't get to have. So that's a little blessing in disguise, but we could just never find anything that fits. Her presentation it was always it could be this except for we were thinking that but not really because of this and so Didn't have a firm diagnosis until she was born 

She was an emergency c section. So I was Stuck at the hospital and she was taken to a NICU about 30 miles away that had better equipment, better doctors, all of that. So for the first three days she was in NICU and I was stuck in recovery basically. Oh wow. That stinks. Yeah. It was not a fun weekend. She was born like 3am on a Friday morning and I didn't get discharged until Sunday night. Wow. 

But we were very fortunate because the geneticist at the NICU Recognize some of the things that they were seeing. , like the way her wrists were pulled in the way her knees were pulled in. She just was very tight in all of her joints. And so she knew enough to know what to test for. And so we were actually able to get a genetic diagnosis before she was even a week old and for her condition very fortunate because there's a lot of people with AMC that, you don't fit any of the symptoms for one of the types of AMC that wait years and still don't get genetic diagnosis, still don't get an official anything. So for us to have that official diagnosis within, less than a week was a blessing in disguise that we didn't realize until looking back. 

Deonna: That's a big deal. Yeah. In that world. 

Ruby: Yes. It was huge. 

Deonna: Okay, so what procedures did you or your child have to go through to confirm this, 

Rhandyl: Obviously genetics testing. 

Deonna: Yeah

Ruby: yeah, so that was the big thing, the genetics testing. They had done, like I said, an amnio when we started looking at 20 weeks. They definitely got anything. They ran panels. And I went through and I went through and I asked my parents several times on those the draws that they had done. But again, it wasn't until after she was born that we got that final confirmation. And then they ran a broader genetic array to make sure. Confirmed that. And then I sent a copy of all of that to the fetal maternal specialist. Be like, Hey, this is what you were looking for. Just FYI. 

Rhandyl: Yeah. I know that so much of that is hard to do in utero. 

Ruby: Yeah. And they really, because they weren't sure what was going on and she didn't seem to have a lot of movement. So they were very Hesitant to do any more draws after that initial one. So they did blood work on me But not nothing involving her until after she was That's a fun part of pregnancy Absolutely. It's very stressful last half of my pregnancy to start with but 

Rhandyl: Pregnancy is not fun. At least for me. Anyway, I don't know. I always go back and forth whether it would have been easier To know something was going to happen prior to my delivery with Remi or, I just wonder, but I don't know if it makes a difference. It would be traumatic either way. 

Ruby: Yeah, I definitely went back and forth too, but it was one of those like not knowing was harder. Because we didn't have an answer. We just knew something. And then even my OB said that she would have had me deliver at the hospital where Lexi ended up getting transported to. Had we known, we would have been closer. It just, it was just a lot of some things going on. We don't know what, we try to deliver naturally. So we live in new Braunfels and she was taken to San Antonio. Yeah, 

there was just a lot of things she would have gone straight for C section versus trying to deliver naturally had we known that she was in ICU. Stuck position and like literally physically could not move the entire time I was laboring. So there was just a lot of unknowns leading up to that, that I think made it more stressful than it might've been if we'd had, this is what's going on. At least knowing because there was too many Google research nights that I did.

And so it was like, Oh gosh, it would give me a different, this is possible, but not really because of I would go look up the new thing. And yeah, even just knowing the. The field of thinking that they were in if we could have narrowed that down a little bit, would have been helpful, but , like you said, I don't, it wouldn't have made a difference after she was born. It was just more the week in, week out until she was born. Yeah, 

Deonna: Google's fun. Yeah. . 

Ruby: I was still in the hospital when she called, she's okay. This is what we're testing for. Don't go Google it. But if you do know that she's on the non lethal end of the spectrum for this, I was like thanks for telling me that, at least that there is a non lethal ends, but yeah.

Deonna: All I heard you say was Google and the word lethal. And I'm going to Google it now and figure this out. 

Rhandyl: Oh, man, dang. Okay. Ruby. So obviously. The emergency C section three days before you could see her walk us through those first few moments or days after receiving the actual diagnosis that she did in fact have AMC. Can you describe what that felt like? 

Ruby: I think for me having an official, this is what it is, was the first big relief that I felt after she was born. It was obviously not getting to see her having depend on text messages and texted pictures and videos and phone calls with the nurses and doctors. Yeah. That was really the first time that I had a sense of, Now we can move forward. We know what it is. We know what to do next. 

The PT and OT and speech therapists at the NICU were fantastic. They immediately started digging in. What do we need to be doing? Where do we need to start? So within the first week and a half after she was born, PT was already in there doing stretches and getting her loosened up.

So arthrogryposis is a condition that Your joints are either in a fixed bent position or a fixed straight position. There's just no movement in them because hers is a genetic variation. It's all major joints. So neck, shoulders, elbows, knees, hips, all the way down to finger joints. And so not having any movements they knew immediately they needed to start straightening her out because she was born with her wrist pulled down straight. Her fingers were all tucked in. We didn't even know she had fingers on one hand until she was born because she never opened them up during the sonograms. And so they just knew immediately they needed to get those joints moving. And so they were very fantastic about immediately getting that work done, getting it started.

And it's a key thing for arthrogryposis because it's not a Progressive disorder, it won't ever get worse than it is. So when you're born, it's at its worst point, but you can't lose the progress that you've made if you don't continue with the work and so motion as they started studying They knew we've got to get her moving because that's just the best option right now. Just she's tight She's pulled in we need to get those arms straightened out We need to get her legs straightened out and so they immediately started working on that and did everything that they could Until I you know got there a few days later You Worked everything out, but the team there at the NICU that she was at were just phenomenal in terms of we've never heard of this. Let's find out what we can and move forward. Oh, wow. Yeah. 

Deonna: I like it when a team has willingness to go into something they don't know or understand and Yes. That's all you ask from them is to try. 

Ruby: Yes. Yes. Yeah. I'm looking to you as the professionals. What are we supposed to be doing? Yeah. At least they were willing to dig into it. 

Deonna: Sometimes they're like, Oh, I don't know. 

Ruby: It's before, yeah. Yeah. 

Rhandyl: Yeah. I get that a lot. 

Deonna: That happens a lot. Yeah. 

. How rare is AMC or I know there's so many different types, but for Lexi's specific genetic variation. 

Ruby: So AMC is an umbrella diagnosis and it occurs about once in every 3, 000 live births and her genetic variation is about once in every 10, 000 live births. 

Deonna: So one of the reasons rare, but it's not as rare as I thought, like a lot of kids out there have it. 

Ruby: Yes. And there is a phenomenal online community for AMC. Like I cannot say enough about the support that we have through the AMC community online. And so it's, yeah it's rare enough that you might not ever. See anybody in your area, but they're there, like we know several people in the San Antonio Metroplex that we've been able to connect with that we probably , we would have never met them otherwise, but yeah it's common enough that you can connect with people, not necessarily with her genetic variation, but with those that have AMC.

Deonna: So you said it's not progressive, because I was wondering if it was just going to get worse. It's I've been told my daughter's. condition just, like gradually going to get worse over time, but if it's not progressive, what type of prognosis did they give you for her long term?

Ruby: So most AMC parents, when their child is born, they're given the worst case scenario. Your child will never walk, depending on where they're impacted, if it's their arms, their legs, whatever. They weren't quite sure what to tell us about Lexi because the way she was positioned in utero, she had a lot of internal issues as well. And so while the arthrogryposis portion of it is not progressive, the impact when she was born on all of those other things is where we're having, different struggles than most other kids with AMC. So while most people, it's just, they can't bend their arms or their legs are in that fixed straight position, whatever the situation is, it's just an orthopedic condition with some of the genetic variations. There's other underlying or, coexisting factors to deal with. 

And so she had, Diaphragm was displaced. So that was her first surgery was a diaphragm placation to pull it up off of her lungs. 

Deonna: Allie had that too. 

Ruby: Yes, it was. That was fun. Two, two and a half weeks old. She had her first surgery for that one. Wow. That's a big one too. Yes. And because of the way the diaphragm was positioned, she only has one point. Like three and a half lungs. So her other lung is severely underdeveloped because it didn't have room to grow because of the way she was positioned. 

Deonna: Is that why she was on a vent initially? 

Ruby: Yes. So she, we went home from the NICU when she was about three and a half months old. And to that point, she had never been off of any breathing support. So between her other surgeries, being intubated, even just having the nasal cannula, she was never off of breathing support for more than four or five days at a time. And so we went home. Two weeks later, we ended up back in the ER her O2 had dropped down to 49%. She was lethargic. She was, borderline, 

Rhandyl: so they did not send her home with oxygen. 

Ruby: No, because her stats were always great. She was off the charts in terms of she's always puzzled them with her test results versus what you look at and see. And so she was doing fantastic. We were all. decannulated in terms of no nasal cannula, no breathing support, anything for about a week before we discharged. And so two weeks after being home with no support, her body was just like, can't do it on my own. And so her lungs stopped. Processing all of the CO2 or like it was just building up in her body.

And so we actually had a pulmonology appointment that day when I left, something was off, but I didn't know what we didn't have a pulse ox at that time. We just had a heart rate monitor. And so her heart rate just kept getting lower and lower. And by the time we got to the pulmonology appointment, they hooked her up to a pulse ox. Gave her oxygen immediately. She was actually readmitted back into the NICU because her team was like, don't send her to the PICU. We know what's going on. So yeah, it was another blessing. Like we had so many points along the way that it was like, that was definitely an intervention on our behalf. Never readmit ever.

Deonna: Yeah. They're like, you're disgusting. You've been out in the real world. Do not come back in here.. 

Ruby: You're not coming back. But because of. Everything that was going on with her. And you know how recently she had been discharged, her team was like, no, give her back to us. We wanna make sure this is all updated. That's awesome. Two weeks after we came back to the NICU is when she got her trach. And so they just, bottom line, she couldn't support herself. And so 

Deonna: how long did she have the trach and the vent and like all that stuff? 

Ruby: It was two years to the day. Which was funny because. When the ENT put it in, she's I'm probably thinking like one, one and a half to two years. And so then when we went back to get decannulated and everything taken out, I was like, you realize it's two years to the date. And she goes, I know I'm that good. So she was the best ever, but 

Deonna: don't get a big head over here, but take it out today. 

Ruby: If you look at my Facebook memories, it is two years after. So yeah, she Only use the vent for about a year and a half during the daytime. And then that last six months we weaned her off of it at nighttime. And so she just needs time for her body to grow and for her lungs to catch up. And yeah, two years with the trach vents and G tube and all that stuff was a little longer, but.

Deonna: Oh, yeah. We know that life, don't we, Rhandyl? Yes, we do. That's cool that she got to get away from it, because that would be so nice. No more trach care, no more carrying that big ol heavy thing around, but 

Ruby: For sure. I always tell moms that are freaking out about all of that stuff, I'm like, yes, it's scary. And then after two weeks it just is what it is and you move on and you deal with it, but I definitely don't miss it. So I hear the tones when we're in the hospital now, like the beeps of certain machines. And I'm just like, make it stop going very much. 

Deonna: To me, the water heater ones, the most annoying, like I hate that one. Like beep, boop, beep boop. 

Rhandyl: Yeah. Okay. Can you take us through I know you said there's a part a and a part B. Can you explain between Part A and B, and then what happened 

Ruby: in Part B? Yeah, absolutely. Part A, we came home from NICU when she was about five months old. G tube she was fully tube dependent at that time. Trach vent, all of that fun stuff. After she got the trach out when she was about two, I started looking at, I hated mixing formula. And so I started looking at blended diets and I couldn't stand the smell of it to start with, but then measuring all that stuff. She was a really good candidate to do a blended diet. And so I started actually making all of her tube feeds and had a pretty good system worked out, worked with her nutritionist, the GI and everybody to get her recipe figured out.

And she like blossomed after that, just getting the nutrition that she needed in her body. Like her hair started growing. She was practically bald up until that point. But she started growing. She just kept getting stronger. She started eating more by mouth after that. And so by the time that she went to pre K 3, She was actually only down to two tube feeds a day. And so we would do one for breakfast and one for dinner and she would eat everything else in between. Oh, that's great. So by the time she was five, getting ready to go into kindergarten, we actually got to take the G tube out. She had grown so much. She was eating so much. She was progressing. When she was about three and a half or so, we did surgery on her feet to get her ankles into the correct position for her to be able to stand.

So she was starting to stand. She was starting to walk with her Walker and her braces and everything. And so just making fantastic strides, we were doing great. COVID hit, she thrived through all of it. We locked her away knowing that she had lung issues. We're like, we're not playing games. We're not doing any of that, but yeah she did fantastic. Like to the point where. She was starting to walk with just her crutches. She was starting to stand with no, not holding onto anything or walking with no things is what she's always called it. She was just, she was doing so fantastic, stronger every day.

And then when she was. seven that summer. She got sick one night. We thought it was just a stomach bug. She just couldn't keep anything down. The next day she was starting to act just really strange. , her pupils were like pinpoints. She was super lethargic. I could tell she was starting to lose like some trunk control. Couldn't sit up by herself. And I was like, something has shifted overnight. Not sure what's going on. So I called her pediatrician. They were like, go ahead and take her to the ER. So we took her to the ER. By the time that I got her to the ER, which was the longest 35 minute drive that we've ever had to make she was completely unresponsive. I could feel on the side of her stomach, there was something going on in her stomach area. It felt like a protrusion or not hard enough to be a mass, but you could feel something in her stomach area. 

They got her back there, couldn't see anything on any of the images, couldn't figure out what was going on. And they gave her some glucose, which kind of brought her back because her blood sugars were super low and they were doing everything they could just to get Some awareness back into her they ended up putting an NG tube in and drained almost three liters of fluid out of her abdomen. Oh my goodness.

Deonna: I didn't know an NG tube could do that. I thought it was for stuff going in, not coming out. Also. As soon 

Ruby: as they got a port into her, it just started coming out. 

Rhandyl: That is so much fluid for a stomach. Like 

Ruby: for a seven year old stomach. Yes. That's so weird. So at that point they said, since we can't see anything and she's now going back in and out of consciousness, they lifelighted her to San Antonio. So we were at a smaller hospital at that point. They lifelighted her to San Antonio. 

Deonna: What's their children's hospital called there? 

Ruby: Christa Santa Rosa. 

Deonna: Oh, okay. 

Ruby: So they life flighted her. I was not allowed to fly with her, so again, now I've got to drive 35 more minutes. Somehow I beat them to San Antonio. Of course you did. As soon as they lifted off, I took off, and there was No traffic that day. Like the one time ever that I 35 was completely clear.

Deonna: Oh my gosh. 

Ruby: We drove straight there. So this is 2021. We're like in the second wave of COVID protocols. So they're lax, but not really. They made me take a COVID test and couldn't leave the room until her COVID test results came back. But once hers came back negative, I was allowed to leave the room. Things were all over the place. I hate that. It was so funny. They had they were fully suited up until the test came back negative. They had the air sterilizers in the room and all that. And it's 

Deonna: they make you feel so gross. 

Ruby: It really did. I was the only one allowed in her room until all of our tests came back negative. And so anyway, so we got her there. They reran imaging, still couldn't see anything. So at about 10 PM that night. The surgeon's we're just going to have to go in for an exploratory surgery. We just got to open her up and see what's going on. Yeah. 

So they go in at about 2 a. m. He comes out and says that they had to completely remove her stomach. That somehow her stomach tissue had swelled up rapidly enough that it basically cut off the blood flow, the blood supply and all of her stomach tissue had died. That is so weird. Yes, within about 24 hours. So when she had started feeling bad that day before, that evening, and then when we took her into the ER.

Deonna: So was she septic? Was she septic? That was why she was being so lethargic and stuff? 

Ruby: He said that if it had been an hour or so more, she would not have made it. Oh my gosh. So that was the third time that I've watched her almost die. Yeah, and this is at 2 a. m. at this point, and I'm like, she has no stomach. Now what? Yeah, so now I'm trying to process all these things. 

Rhandyl: It's never convenient whenever your kid tries to die. 

Deonna: It's always at night. Could our kids ever try to die during the day? Seriously.

Ruby: When somebody I know might be on duty we've got the night shift people at the ER now.

Rhandyl: When I'm actually present. 

Deonna: Like it's on nights and it's on a weekend when the B teams at the hospital and you're like, okay, where's the Friday night when nobody's going to be here until monday morning at seven in the morning. That's the time to show up. Yeah. That is crazy.

Ruby: That was all July 1st. So they did the initial surgery, they removed 96 percent of her stomach tissue. They went in two days later to see if basically what they left was like the top 2 percent and the bottom 2 percent where it connects to your esophagus and your intestine. And then they went in a couple days later and that had died also. So they removed those, did a big clean out of everything, and then had to game plan. How they were going to reconstruct her GI system basically. 

So they went into the final third surgery on day four with three different plans in place. Thankfully they were able to get the first one to work the way they wanted to. So they basically took her intestine and created what's called a Hunt Lawrence pouch, where they fold over the top of it. And connect it directly to the esophagus. So she has the ability to eat orally because that pouch will hold about two to three ounces worth of food, but it will never be a substantial enough amount to sustain her. So we're back to G tube and feed in con and yes, correct. Oh, man. 

That was the part B is we were thriving and now we're back on G tube feeding pump, 12 hours a night, up every three hours for me to add more formula. 

Rhandyl: And how old was she when this happened? 

Ruby: She was seven, seven and a half. 

Deonna: This was in 2021? Yeah. So I have a question , cause , our kids have all been in surgery, probably like every single one listening to this podcast, but did they not call you during the surgery and be like, Hey, we may have to take her stomach away or was it an after thing where they were like, Oh yeah, we did that.

Ruby: No they didn't have a choice. So it was gone. There was nothing they could do to salvage it. There was no options. It was they take it out or she doesn't make it. Yeah. We didn't know any of that at the time. We're just sitting there and four hours later they're like, Here's what happens. This exploratory surgery to go see if we can see what's going on resulted in. 

Deonna: It had to have been really scary because I'm starting to realize doctors can do some crazy things with your insides. They can make things into new things. It's wild what they can do, but . If they would have came out and told me that I would have been like I think she needs that. I don't know. 

Ruby: Yeah. Aside from it being 2 AM. Like I remember some of the thoughts, like, how does she live without a stomach? Like, how is that possible? But he was very open and honest with us. He's this happens more commonly in adults with stomach cancer, where we have to remove all of it and all of that kind of stuff. So he's there are options. He said he has seen this. It's specific instance of what happens only four other times in his 25 year medical career. The only connection between all of those cases is that at one point they had a G tube. One of them had it out for years and years. One of them had barely, but that is the only connection with like different ages, different genders, different diagnosis. I know. And so that's the thing that's the only thing they could tell us was it's possibly connected to her having a G tube. 

Rhandyl: Like how, why did it happen? 

Deonna: You have a hole stomach happen? It's not, every time we change it, I think this is weird. There's a, yeah, I'm putting a tube back in my stomach. It's, 

Ruby: the same with trach changes. Like when they first told me, they're like you have to take it out and put it back in before she stops breathing. I'm like, oh, no pressure. Okay, sure, no pressure. Let me yank this outta my kid's neck and then get it back in time. Yeah. But that's, 

Deonna: so it's not related. So this situation wasn't necessarily related to her genetic disorder. That was just like a bad luck thing. That could be related to having a G tube, but 

Ruby: but even that they're not 100 percent sure on. Yeah. This is just a total, things are going fantastic now out of left field. There's this let's knock you back down. Yeah. 

Rhandyl: Oh, okay. So does her tube now. I'm just curious. Is it just a J tube? 

Ruby: It's a J tube, but it's the same Mickey that we had as a G tube. It's just in a J placement now. Okay. The only thing that goes into it. 

Deonna: What's the difference because I only know what a G tube is. 

Ruby: So J goes directly into the intestine. Uh, G tube is into stomach itself. And so you can still process, like that's how we were able to do blended diet, all of that kind of stuff, because she could still process all of that. Now we don't have any of those options. So we have to have a specialized formula that's At the enzyme level already processed a certain extent because she doesn't have the same absorption rate, so we can't do meds through the G tube, which was always the benefit of having the G. Like when she's sick, I can just push fluids, or I can push broths, or whatever I needed to, and we're limited on what we can push through the J.

Rhandyl: So she can, but she orally will take. She can't really take her meds and 

Ruby: She does. Like any 10 year old, she fights it and hates it. Like she had massive knee surgery last year and refused to take any of the pain meds because she didn't like the way they tasted. I know you are hurting right now, but she's still She's a very stubborn 10 year old and so

Rhandyl: she has to be with all that she's been through. I feel like all of our kids that have been through all the things have to be stubborn or they wouldn't be here for sure. Yeah. 

Deonna: Yeah. They have to fight. They fight us, but then they also like their problems. 

Ruby: Like telling myself internally, this will be good someday that she is so determined to be an individual, but not right now.

Deonna: Does she have any cognitive disabilities or is she able to speak? 

Ruby: So she is actually cognitively advanced which is both good and bad. So she's 100 percent aware of everything that's going on and everything that's happening to her. Stomach surgery is really the first one that she remembers because everything else she was young enough, little, yeah. Even the G tube coming out wasn't significant enough to like make a lasting impact on her when she was five. And so the stomach surgery was. Incredibly traumatic, obviously, but also it was the first one that she was old enough to understand and know what's going on and what's happening and I don't have a stomach like even she had the same questions. How does that work? What happens now? And but yeah, that's it's both a blessing and a curse in so many ways, but she is. aware and super bright and smart. And yeah. 

Deonna: Yeah, I like, it's funny. Cause like with Allie, she's cognitively the same as her peers. So when these horrible things happen to her, like she'll wake up or something and be like, Did I almost die again? And I'm like, yeah, I'm not going to lie to you, but not great. Like I was gonna tell you, it was not good, , it's a blessing, but Oh my goodness. Like, when they verbalize certain things, you're like, okay, that was traumatic for me here.

Ruby: Not something my 8 year old should be asking me. Yeah. Yeah. Yeah. I will say though so she started second grade. That all happened in July. We were hospitalized for 22 days. So we get out , end of July. She started second grade in August. And I had gotten this clear plastic apron that has like a bunch of stuffed internal organs that you could use to explain to kids this is what it is. This is where your lungs are, all this kind of stuff. So yeah, she's a very visual learner. And so I knew she needed something to be able to See and process and play with and be like, my stomach out and here's how they can trash. Exactly. 

But she took that for the first week of show and tell. So she could help her friends. And so I asked the teacher, I was like, please, can I come watch? And she's like, yes, please. Because I know they're going to have questions. Yeah. So she literally rips it off. She goes, they took my stomach out and she tossed it behind her. And she pulls the whole intestine off and is and then they folded it over and this is where your esophagus is.

So second grader giving like this internal anatomy lesson and all of her friends are sitting there with like eyes as big as dinner plates. What? And then she just pulls her shirt up and shows them and here's my scar. And I was like, show and tell is over. 

Deonna: And we're half naked on the first day. 

Ruby: Yes. It's welcome to second grade. 

Rhandyl: That is adorable. I love it. 

Ruby: Her poor teacher. Her face is just Oh my goodness. Did that really just happen? I'm like, I love it. Meet Lexi. Yeah. I love it. Yeah. She can tell you exactly what's going on. Exactly what her diagnosis is. She loves to talk about all the things.

So like when she was younger. Probably up until she was about two, I had a blog that I was keeping regularly, but I was writing it more like for her to be able to read when she gets older. So it was more like letters to her. And so she is forever asking me when she gets to read the blog. And I'm like, as soon as I have the mental ability to go back and reread some of the things that we went through and put it all together for you. But she is forever asking me now, tell me about the time that I went on the helicopter. Tell me about the time that, and I'm like. We really have to right now. 

Deonna: And you're over there shaking and having a panic attack. 

Rhandyl: You're like, I don't really want to bring that back. You may not remember it, but I do.

Ruby: I do, yeah. I remember when you looked at me on the way to the hospital and were like, oh, mommy, you're still here, oh, my goodness. Some of the things she was saying were just like, drive faster. My mom was the one driving us the time. I'm like, stop. Sitting in the floor of the back seat. Just okay, Lexi, let's stay awake. Lexi, let's look out the window, all of these things. Spraying her with a water bottle. I'm like, come on. Oh my gosh. Shaking her foot. 

Deonna: Oh man. , and it's funny when you said she lifts her shirt up. I'm sure other parents can. Understand this, but like our kids bodies are just , they're in the hospitals all the time and they've 

Ruby: no sense of autonomy in terms of this is my private body.

Deonna: Yeah. Like modesty. Like if they were super modest, it'd be really hard because they're constantly having people mess with them and no modesty. Like Allie used to be like, this is awkward. But now it's just 

Ruby: I have to tell her, she gets out of the bath, she comes out of her bathroom, I'm like, clothes. At least there's a towel over you, she's it's just us. And I'm like, okay, yes, but. Yeah, there's no concept of this should be hidden or this isn't something that we show everybody, yeah. She just knows she now has a scar from the bottom of her breastbone down to her stomach and it's, and 

Deonna: oh, I believe that. Oh my goodness. 

Rhandyl: Okay, I'm curious about the ortho part of her diagnosis over the last 10 years. I know you've mentioned a couple of different orthopedic surgeries that she's had done, her feet, and then her knee, you said. What does that look like? I know you have to keep up with all the passive range of motion and et cetera, et cetera. But what does that look like? Her therapy, regimen, surgery, all of that.

Ruby: Yeah. So orthopedically she's actually very mild on the arthrogryposis spectrum. So once we were able to get almost full range of motion back in both of her elbows and in her wrists, so they've not actually done any surgical interventions on her upper extremities. Okay. So they are functional. She figures like her fingers are still stiff, but she's able to function in a way that works for her. So they haven't done any surgical interventions. 

Lowers is where she's more impacted. So when she was three and a half into four years old, she had vertical talus correction. So basically they have to rotate the talus bone in her foot and they pinned it in place. This was like a. First shot at being able to stand without discomfort. So without that bone being in the correct position, walking would have just been extremely painful. So she hadn't started standing yet not making any motions toward walking really, but once we , Got that corrected. Then she really started making strides and that was all right before she started pre K.

So then when she went to school, saw all of her friends walking and running, that was like a huge peer pressure boost that I need to be up and walking too. And so that was fantastic timing for that. That was when, like I said, three and a half to four years old last summer. So when she was nine, we went and had. A combo surgery. So her genetic variation, one of the classic markers is that there's a lot of webbing behind the main joint. So behind her knees at her elbow joints and in her shoulders. And so the doctor that we see is actually in Florida. He specializes It's not just in arthrogryposis, but in her genetic variation of it. And so he's like the one that we go to. 

Deonna: Where at a Paley institute.

Ruby: Yes. Paley Institute. 

Rhandyl: Oh, that's what I was hoping. Yes. We talked to you there. We have another friend that has a kiddo that has all their orthopedic surgeries there.

Ruby: I remember either seeing it or hearing it and I was like, yay, somebody else knows about Paley.

Deonna: Oh yeah. It's in a pretty place too.

Ruby: It is. We were there for eight weeks last summer, which wasn't the most awful thing it's.

So she had major surgery last summer and what they did was they cleared out the webbing behind her knees. So in order to get her knee to straighten, once all that webbing is gone, they actually had to take two inches out of the top of her leg bone so that they could then realign all of the tendons and ligaments to flow like flesh with the back of her knee. . To make that alignment. And then they had to do a hip release also because her hips and her knees were like at a 90 degree angle. So she was in a permanent sitting position basically is how she was fixed.

That was the amount of extension when she was born. She was actually pulled in completely. Like her knees were up to her chest. So we were able to get to that 90 degree angle for both her hips and then her knees. And so this allowed her to get that full extension in both her knees and About 30 degrees from 90 down to 30 and in her hips. And so that's significant. Yes. So she went to 90. He was hoping to get close to 20 to 25 degrees in her knees and was able to get down to zero. We're at about 10 to 15 now. So she's lost a little bit of that just in natural kind of pulling back into that positioning. The more that she will wear her braces and do the exercises and get the stretch back, then we can get back down to zero. But that's a, fighting the 10 year old stubbornness side of it. 

So yeah we did that last summer. That was the last big orthopedic. What we're looking at next in addition to continuing to work on her legs is she's going to need spinal surgery pretty soon. So because she is. still primarily a wheelchair user. And then it's pretty common with Escobar syndrome to get the lordosis curve where you hunch in, but because she's primarily a wheelchair user, she is more prone to a scoliosis curve also. So right now she's got both and we actually went. If this last August for follow up and he's like, I don't know how, but those curves are actually working to protect her good lung as opposed to smashing it.

So most of the time, when you look at scoliosis surgeries, you're looking to regain lung function, the way that both of hers are working. They're actually protecting her good lung. Not impacting the smaller lung because of its size. And so it's one of those, it's it's, yes, we need to do something about it, but it's not crucial, critical right now. So we'll go again in February for our next round of imaging to determine whether that needs to happen this next summer or not. So we're looking at another summer in Florida, but it had progressed significantly from last summer to this August. So in the year since her knee surgery.

And a, we're on an every other year basis with some sort of major surgery at this point. So we were laughing about it the other day. She's so I had my knee surgery when I was nine. I had my stomach surgery when I was seven. I had my G tube out when I was five. I had my foot surgery when I was three. I was like, let's just know if 11 is seven. final. We're not planning anything for 13. We're just going to be done. Yeah. 

We're seeing a little bit more on the orthopedic side as she's growing and her body is getting bigger and she's getting closer to that, fun time of life. And 

Rhandyl: so does she get does she still get 

Ruby: She gets PT. We go twice a week. But just since the surgery before that she had weaned off of everything. She gets services through the school, but it's more environmental based. So how do we adjust things for classroom? How do we make sure she can go around the school, that kind of stuff. But yeah it's not significant.

But yeah, so since the knee surgery, she has been doing PT twice a week and we'll continue that and working with that just to keep her flexibility and her mobility. 

Deonna: Okay. So you obviously have been through a lot of stress as. All of us have that have kids like this, but how did you handle the stress of all of it? And like, how did your parents help you with that? For example, 

Ruby: Initially not well I am very much a type a planning, like I'm in Enneagram three, which is the overthink overanalyze over prepare for. And yeah. But, Even once we got the initial diagnosis, it was like, okay, now what was my first thought? Yes, we've got a definition or a diagnosis. We've got a direction what's next. And so I don't do well with the unknown and you don't have a choice, but to deal with the unknown in this world. And so the. Like we were talking about earlier, the Friday night ER visits, which means that we're not doing anything on Saturday, so cancelling plans, all of the last minute stuff I hate being late to things, , 

and unfortunately, she's the same way with a lot of things she's like, but we had this plan, but we had this scheduled, but we had, and I'm like, and guess what, it's not happening now. It's awesome, yeah. We both thrive on routine and predictability, and so we try to keep as much of that in place as possible so that when things do get shifted or moved around, it's easy to get back into our day to day groove. And I think that was my biggest thing was the not knowing portion of it and having to, integrate that flexibility into my mindset and into my mentality of just, all right, shifting gears. All right. Now we're going down road B. Okay. Now we're doing a one 80 and going back the other direction. 

And especially when she had her stomach surgery and it just Opened up the flood of things that I knew I had never processed from when she was little and it's Oh, feeding pump is exactly the same one that we got rid of and it beeps the exact same way and the smell of the formula, all these triggers that I, it was definitely a moment of, I never dealt with any of that stress from when she was little because we just had to move forward. Sure. There was no option. You just got to go with it. And then we had a couple of good years that it was like, okay, we're great. No need to even look back. And then it's Nope, we are right back in it. So

Deonna: that's tough. I've been through little things like that. Like I'll feel like I'm okay for a while. And then some emergency will happen and it just sets me back and I, it takes me days and days to even get over it almost it's so hard and if something big happens like what just happened with Rhandyl recently That doesn't go away in a day. It really knows you back it's yeah, and it brings up all the bad feelings that you 

Rhandyl: For sure, every hospitalization. It's like man. It takes you all the way back, like all the way back and you're just every time, all the trauma again, over and over. It seems like I want to say it gets better, but it, I just don't, it hasn't for me yet. 

Ruby: For sure. Yeah. We're 10 years in and it's like, when, what's that point? Yeah. 

The AMC community has a big nationwide conference every year. And so we went to Atlanta this last summer for the conference and even just, Hearing someone's pulse ox going off and knowing in my head, that's not us, but just those little triggers of big deal. You get that panic feeling of, is it, did the sensor come off? Did her O2 drop? What, why is it beeping? And even knowing. In my brain, we don't even have a pulse ox anymore, but that tone, that beep, it will forever be ingrained. So it's you can't escape from those things. 

Deonna: I think we're all a little screwed up forever because even like there's things, you know, there's, and I say that jokingly, but it is true. I mean, 

like There's things that me and my husband are still really uptight about. And we probably could chill a little bit, but We are afraid to because we know what could happen like it's probably unlikely to happen or whatever But you just know and I feel like if you get too comfortable That's when it's gonna get you like and we're just you know cynical. I feel like at this point like about 

Ruby: You have to be there like you can't overlook some of those things. So when she was younger and we had all the equipment and all the supplies, I had a go bag at the front door. I had a go bag in the back of my car, like there was backup supplies in her backpack when she went to school, like all the things.

And then she, when she was doing so well between five and seven, it was like, I let go of all those things. Like we don't need that anymore. We haven't been to the hospital. I haven't been to the ER. And then after her stomach surgery, we're back with the backup tube and the backpack and all these things. It's she knows if she ever has to go to the hospital and I'm not home, whoever's home with her needs to get the red backpack by the back door. And that gets us through a three day admission. And it's no 10 year old should have to know those things. Yeah. 

She did her first church camp this last summer. So she was gone for a whole week. By yourself, like the group that we worked with was amazing. They had a child life specialist that is a member of one of the churches that goes there that volunteered to be her one on one helper for the week. And so we went through all the things, I had the whole tub of stuff, all the backup stuff, her binder of information. And she's the one that like opens it up. And it's this is where all of this information is. And this is where all of this is listed. And so it's it hurts, but at the same time, it's so Incredibly relieving that she knows all of that stuff and knowing that even at 10, she can verbalize what's going on, what's happening with her body.

I've made it very clear to her you have to tell me what you're feeling. You have, I don't know what's going on in your body. If you're too tired to do something, you have to tell me. And she's, there has been a few times over the last couple of years where she's like, mom, I can't go to school today. I know I won't be able to focus. And so if she. verbalizes the fact that she knows her body's not going to make it through a day. We stay home. Yeah. Just having to acknowledge that you have to know how to listen to your body. And so self advocacy has been a huge goal for us in the last two years. Like you're old enough to know This cannot happen, right? She has days at PT where we get there and she gets going and 10 minutes in. She's it's not happening today. And she's got an amazing therapist. And it's okay, what can we do if we can't do standing and walking? Can we at least do stretches? And so can we get something out of this? And yeah just having to bounce back into those things. 

But Her getting to the point and she's old enough and aware enough to be able to start listening to her body and being able to say this is not happening. This is, we need to move forward with this. She, if she says we need to go to the ER because something's hurting, then I know get in the car. Now we're going because she hates ERs and she won't complain about pain. And so it's if she says we got to go 

Rhandyl: yeah. I. That's one thing that I can't relate with Remi. And so I know for example, she is progressing more and more with her AAC device. And so some of the new speech therapy goals we have is for her to Which we would love for her to be able to tell us when she needs to go to the bathroom or when she feels like she needs to be suctioned. Like those are my main things. That's what I was gonna say, the suction big things. Yeah. And because there's sometimes. When, in hindsight, she was really upset about something and we couldn't figure it out and then she would finally go to the bathroom or , we would finally feel or hear that she needed to be suctioned, but she was trying to tell us, in her own way, but it was just, Her being upset and so that's some of our big goals right now is for her to Cuz she can go into her device and it's just learning where those things are and her device being Available, that's another thing is and she is verbalizing more.

But man, I wish that, in an emergency situation, I just think about, Oh my gosh, if she could just say, Hey, don't forget my red bag by the back door. Yes, absolutely. Yeah, man, that would be nice. But no that's something that I, we get to. At some point, even if it's just for the little things, yes, 

Deonna: And I was thinking when you said that your daughter has this binder, we talked to Ryan from my Mejo. And I think with kids who can verbalize for themselves even having an app like that on their phones or their iPads or whatever, to be able to show this person, Hey, this is how you. Help me. This is how you take care of me. It would be such a neat thing for kids like your daughter and Allie to be able to have something there because they probably all have iPads and phones at this point 

Ruby: I was actually listening to that episode while she was at church camp and I was like, I wish I would have heard this two weeks ago, so I could get it all set up. It's on my list, like my never ending list of things to look into and get to, but I was like, yeah, that is exactly what we need. Cause like my parents know enough that they'd be able to answer basic questions until I got there. And realistically, they're the ones that watch her 99 percent of the time when it's not me. And they know enough, they would probably be the ones taking her. Yeah. But it's just the binder itself is just divided. Like here's the last printout from our last audiology appointment. Here's the last one out from our, so it's basically just the office notes from each of her specialists and then like her overall health summary. And then we added one thing to the back cover this summer when she went to camp and it's basically the outline of a body and it's an arrow pointing at the ears. Yes, she has hearing aids, but she doesn't necessarily need them in large crowds. It's for smaller, quieter situations, so basically a diagram of all the things to know about Lexi's body. 

And so it's just enough that they could get started on whatever they needed to do until I could get there. And yeah, it's one of those it's I wish we didn't have to have that by the door anymore, but like you said it's back to the reality of. There's certain things that now I will never let go of again because I didn't have that in place for so long. And when I needed it, I didn't have anything like my parents had to go back and find everything that we would need once we knew that we would be in patient for longer than a couple of days. And yeah, that was true. 

Rhandyl: So Ruby, what are some of the hardest parts about caring for Lexi? 

Ruby: I think the hardest part is that as she's getting older and like I said, becoming more and more aware of what all's , going on with her body, what all's happening with her, she's starting to realize. Exactly how different she is than her peers. So she's always known that there's differences, but they're becoming more and more significant. So this is our last year of elementary. She goes into middle school next year. So she's looking at things like she loves, she has, she goes to a special dance class. Could she try out for the middle school dance team? Who knows? She go into cheerleading. Does she? So all of these things that as she's getting older and starting to make more decisions in terms of activity, she's involved in things that she wants to do. It's becoming more and more glaringly obvious to her. What some of those limitations are. 

And so I'll be, I will forever do anything I can to support her and to make those things happen and to figure out a way to do that. And she's got that same determination of I'll figure out how I can. Yeah. But I think that's the hardest thing is because she is. She's fully aware of everything going on and as she continues to get older, we'll just encounter more and more of those situations where we have to do something very differently. She's obviously already talking about when she turned 16 and starts driving, all these things. And in my head, I'm thinking vehicle modifications and the logistical side of it, she's ready to go to college. She's going to be a fourth grade teacher and all of these things that it's yeah. , she's just at that age where she's dreaming big and I love it. And then the very next day she'll be like, okay, but then how would I, and like it's back to reality.

And so she's in the dreaming stage, but also recognizing limitations. And I think that's the hardest part is visiting with her about the reality of the situation. Yeah. You're going to be on a feeding pump for the rest of your life. Yes, you're always going to need Support in this area, things like that. And so not trying to discourage her from chasing those things, but helping keep things in a reality. Yeah. 

That's so hard. And it's so gut wrenching when they start thinking of themselves as older, like teenagers or adults. Like Allie used to talk about being a mom. That's. Highly unlikely to ever happen in any like there's no way she could have a baby like herself, but 

we've had some of those conversations recently to am I going to be able to have kids when I do that? And I'm like, we'll see, we don't know, 

Deonna: and that's how we are too. Like me and Dane are like, Oh, see what happens when you get older in the back of our minds. We're like no but it's hard when they start realizing, yeah. It, to me, it's gut wrenching when they start realizing that there's going to be massive limitations as an adult because, when the dreaming ends, then it's oh man, but allie has those same things. She'll say something and then a couple days later she'll say, I don't know actually if I could do that because of blah, blah blah. Yeah. And I'm just like, we'll see. We'll out. I don't know. Yeah. 

Like the other day she's I think I'm gonna have to go to college. At LCU where we went. And I said, oh, 

Ruby: and live at home and have mom take care of me the whole time. 

Deonna: basically, like I said, oh yeah, maybe that would be good. And she's just yeah, I just don't know if I'm gonna be able to leave you guys. And I said, yeah, I'm not sure if that's gonna be possible . Aw. But it was like, she was like. Working it out in her head and you're just like, okay, excuse me while I go cry in the closet and eat an entire bag of chips and then I'll be done with that. 

Ruby: She's got all these plans and I'm like, can we just finish elementary school, please? Can we just get through this grade? Seriously, not talking about the future. Yes, you're not grown up, you're not 18, you're not, we're just, we're in fifth grade, aww. 

Deonna: I know. No, I get that for sure. 

So what have been any positive, unexpected, or surprising big moments that have happened through raising her and just your experience? 

Ruby: I think probably the biggest thing is just seeing once the light bulb switches in her head and she decides she's going to do something, it's going to happen.

Like when she was younger, she had zero interest in walking until she decided I need to be walking. And then all of a sudden she could not get enough time in her walker and we had to put the braces on as soon as she woke up. When it came time for. We have, I know you guys have talked about, you've got your challenger league baseball team. We've got a similar baseball team here. And the first couple of games, she was very much I don't know about this. And then once she decided I'm going to hit the ball this week, like she was knocking it off the tee, and so once she puts her mind to something, it's going to happen, like period, end of story, no arguments, it's going to happen.

And so I think that's been the most positive thing out of all of this is knowing you. She's going to be okay because once she gets something in her head, it's going to happen. It not concerned about that side of it. 

And then I think the other thing that the bonds that we have because of everything that we've gone through, it's just very reassuring for me that she knows. No matter what I'm here, no matter what you're going through, no matter what's happening. I'm here. I got your back. We're a team We can do this and you know there's been so many times where we're going to a new office or we're seeing a new doctor or whatever it is and you can see in her face, as long as I'm standing there, she's okay. If I have to step behind the shield for x rays or whatever like her face starts full blown panic, but like how long is the room, and so I think just that she knows. She's got people in her corner and even, outside of me, outside of my parents, like there are so many people that those first couple of years watched her grow up on my blog, if you will. And like the connections that we have through all of our Facebook groups, like she knows she's got people. 

So I think that's been one of the other big positive things. Like I mentioned earlier, the AMC online community is phenomenal. And so I can look to the moms that have. Kids even, specifically there's a couple that I keep in touch with that their kiddo has Escobar and they're like a couple of years or older than Lexi. So I can see what's coming next for us. And so it's, those would probably be the biggest things, her determination, the bond that we have and the fact that she knows she's got people. So cool. 

Rhandyl: What or who else helped you the most and hence helped Lexi the most

Ruby: 100 percent my mom. She is the most unwaveringly positive person you could possibly imagine meeting. She is the optimistic stream and the relationship she has with Lexi, like Nana is her safe place. And then the same for me, obviously, because she's my mom. She's just there. No matter what we're going through, like she's a venting place. She's a let you cry place. Like she's just all the things, but she is just one of those people that is eternal sunshine, all the time. And so she's probably the biggest, Support for both of us. My dad being right there with her, but she's just that positive personality that everybody needs that no matter what's going on, no matter what's happening she's that sunshine. That's cool. Everybody needs that. Yes, for sure. Moms are the best. They sure are. No matter how old you are. Oh, for real. Like seriously. Yeah. 

Deonna: So what would you tell a parent who's, Child is getting this type of diagnosis or any difficult diagnosis, really? What would your advice be to them in the beginning?

Ruby: So specifically for AMC and this gets posted on our moms groups all the time is don't listen to what the doctors tell you because they are going to give you the worst case prognosis of your kid will never walk your kid. We'll never, whatever. Yeah. But just, Specifically to AMC, just remembering that, like I said earlier, they're at their worst when they're first born, and then it's uphill from there in terms of mobility and flexibility and all that kind of stuff. Specific to that's what I would say, 

and just. In general, the biggest thing I would probably say is to celebrate the little things, all the things like whether your kid is hitting milestones on time or not, we celebrate everything. Any little things. Find those positive moments. 

I know we were chatting earlier about, nursing and all of those kinds of things. Look for help where you can find it. That was the biggest thing when she initially came home, we didn't have nursing of any type. And she came home the second time with the trach and the vent and the G tube and all of the things we qualified for nursing after that. And it was the biggest adjustment. But I think having the right nursing staff allowed them to be the caregiver so that I could be the parent. And so it's such a huge difference when you get to be in that parent role versus having to make that mind shift of, I can't feel anything right now because I'm keeping the kid alive. And I think that would be the biggest thing if you've got that kind of support is to let them be the caregiver so you can just be mom, just give the snuggles and the hugs 

Rhandyl: and it took me so long for that to click.

Ruby: And there's still times where I'm like, oh yeah, just go give her a hug. Cause right now she needs her mom, it's still, yeah. Even though we don't even have nursing, we haven't in years, it's still that, that mindset you get into. Like when we were in. Florida for her knee surgery. It was like, I'm caregiver right now because we're in recovery mode and she just wants to go play somewhere and, you know, go to the movies with mom. And I'm like, we have to do this and this, and we have this at that time. And yeah it's a hard mentality to shift between, but if you can let them be caregivers, so yeah.

Rhandyl: Okay. So I know you've mentioned the AMC online stuff and you go to the national conventions, etc. But are there any other resources that you would recommend to a parent who's facing these same challenges? 

Ruby: I think anything you can find locally. So obviously school districts are overworked, underfunded, but they have a wealth of knowledges, even if it's just in terms of referrals. So anything that you can find locally, we've got a pretty strong support system locally just for kids of special needs, no matter what those are. 

Facebook groups are amazing. Even if it's not somebody that has, your specific condition or your specific diagnosis, just being around people who get it, which, when you guys first started this podcast, that was the biggest thing that I was like, these people just get it. I don't think there's been a single episode I've listened to that I'm like, I didn't get anything out of that. So just being with people who understands. You don't have, the life you wanted, the life you expected, but here's what we can do to help support you. So find those local resources. 

And then I think the bigger thing would just be to let people help you when you do find them. 

Rhandyl: That's great advice. I know that's hard for a lot of people. 

Ruby: It's a long time for that. Yep. 

Deonna: Yeah. Me and Dane like to be like independent and take care of ourself. And so when we had to start letting other people help us, that was really weird to both of us. 

Ruby: Yes. When she was younger, adjusting to other people being in the house, but then even now, because it's just her and I here, if we have to go somewhere or we're inpatient overnight or whatever, it's there's two or three people that have an access code to my door to come feed our dog. Even that's just People can get into my house, but I have to let that happen so that they can help and they want to, they want, our church family here loves us and supports us and couldn't do certain things without them. But at the same time, it's just let it go. Let people help you. So 

Deonna: that's funny. Yeah, that's true. What are the Facebook and Instagram groups called? Do you know for your specific? Disorder. 

Ruby: So there is most of them are just arthrogryposis multiplex congenita spelled out, but there's also AMC moms. There's a Texas AMC support group. So there's eight or nine different. There's a dad's support group, which is not a usual thing, but I've. I've heard a couple of mentions. They don't have as much fun as we do on the mom's group, it still exists. 

Deonna: They're guys. They never have as much fun as us. 

Ruby: There's also a couple of international groups as well. So specific to other countries and so it's a pretty extensive network.

Deonna: Maybe you could send us some of those links and then we could put them in the notes so that if somebody's hearing this and being like, Oh my gosh, my kid has this and I didn't know about that. 

Ruby: Yeah. I know the Instagram main account is @amcsupport. 

Deonna: Oh, okay. Okay. Yeah. Yeah, that every time you say a MCI am thinking of the Yeah, the movie theaters know. I know. They just need to change their names, so whatever. 

Okay, so our last question, and we ask everyone this question is, what is the best thing that has come out of raising disabled, raising somebody that is disabled?

Ruby: I would say the people we've gotten to meet and the connections we've made that we would have never known existed. The first conference we went to for AMC when she was two, Was definitely more for us and learning what was coming in her future, but now, like I said, we went this last summer and she's old enough now to start making connections with people, other girls, her age, they had, they have a group specific to like nine to 12 year old girls. Just to go in and talk to each other. And so the connections that we've made that now she's able to start making as well. The people we've gotten to meet and places we've gotten to go, we would never ended up in Florida for eight weeks for the summer. And even though it was there for surgery, it was still a fun experience. And so it's opened just as many doors as it's closed, I'll say. 

Deonna: Yeah. No, that's I can totally relate to that. Oh, yeah. 

Thank you so much for talking to us. I know people don't know this, but sometimes we record these pretty late at night, and so it's the only time medical moms can get together, is because Our lives and so thanks for starting this recording, past nine o'clock at night. I'm such an old lady. I always am trying to go to sleep around this time. So it's me too. 

Ruby: When you had initially said, can you do nights? I'm like, sure. Why not? If we have to, 

Rhandyl: it's easier than any other time of the day. Honestly, yeah, 

Deonna: it is. Yeah. I told Rhandyl, we're going to record at nine and she's I am. I was like, no PM. Yeah, I know. It's not normal, but that's, our lives are not normal. What do you do? Thank you so much. I learned so much about your daughter. These are so fun because we get to get a glimpse of what they're going through. Life is like, and then what your life is like, but you'll always be my husband's favorite ski buddy. He doesn't like skiing with me cause I'm not athletic. So it's just 

Ruby: on the slopes today, it would be a whole different story. Yeah. 

Rhandyl: I try to go at least once a year. I love 

Ruby: I would love to still be able to go, but I'm at this point, I'm like, it's been way too long. 

Deonna: Yeah. I'm more of a sitting at a restaurant and chilling and watching.

Yeah. Yeah. But thank you so much. Absolutely. 

Rhandyl: So like Deonna said earlier, I just want to thank you personally for the support that you've given us from the get go. And. Yeah. You've just been so amazing and we are so glad to finally be able to talk to you and thank you for sharing some of your life and Lexi's life with us .

Ruby: I appreciate all that you guys do 

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.