Latest / Tom's Hirschsprung's Podcast / Episode 69 - With Robyn Taylor (Part 2)

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Episode 69 - With Robyn Taylor (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
0:39
Speaker 1: episode sixty nine of Tom's Hirshprungs Podcast. I am delighted
0:44
Speaker 1: to welcome back Robin Taylor. Robin, welcome to the podcast.
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Speaker 2: Yay, thank you so much for having me. I'm so
0:50
Speaker 2: excited to be back on and share an update about Charlie.
0:54
Speaker 1: Yes, no, that's what we're really really looking forward to,
0:57
Speaker 1: because if people have heard part one, it was a
1:01
Speaker 1: really fascinating story where you talk about the start of
1:04
Speaker 1: Charlie's life and her diagnosis of Hirschbrungs. If anybody hasn't
1:09
Speaker 1: checked that out yet, definitely do so. It's a really
1:12
Speaker 1: really good insight, fantastic episode. But you are here to
1:16
Speaker 1: talk about something, well, give us an update really on Charlie,
1:20
Speaker 1: because as we left the last episode, we talked a
1:25
Speaker 1: little bit about what might be next for Charlie and
1:28
Speaker 1: you were sort of deciding between what to do next
1:33
Speaker 1: in terms of surgery. Would you like to give everyone
1:37
Speaker 1: an update really on what you decided and how you
1:41
Speaker 1: came to that decision.
1:43
Speaker 3: Yeah, for sure.
1:44
Speaker 2: So when we left off, we had been to Ohio
1:48
Speaker 2: and we visited doctor Ward at Nation Why Children's Hospital
1:51
Speaker 2: in September, and it was at that time that we
1:55
Speaker 2: discovered that she had was missing eighty percent of the
1:59
Speaker 2: dentate line, causing all sorts of issues. And from there
2:04
Speaker 2: we tried multiple things. So we tried doing laxatives, we
2:10
Speaker 2: tried doing enemas.
2:12
Speaker 3: Nothing was really working. The laxatives. It was like we.
2:17
Speaker 2: Could not get the right amount. It was either way
2:20
Speaker 2: too much or not enough to do anything. She was
2:22
Speaker 2: still having uncontrollable tyrhea, like just NonStop, NonStop, and so
2:28
Speaker 2: that really wasn't an option.
2:31
Speaker 3: She was not tolerating the enemas and that was not
2:33
Speaker 3: an option. It just was awful. So we're like, we
2:40
Speaker 3: can't do this. We're kind of at a loss. What
2:41
Speaker 3: do we do.
2:44
Speaker 2: So it was late November when we had a call
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Speaker 2: with the surgeon and he basically said, your only option
2:52
Speaker 2: at this point is to go forward with the malone surgery.
2:56
Speaker 3: And so basically that is using the.
2:58
Speaker 2: Appendix connecting to the colon and then through the belly button,
3:02
Speaker 2: kind of having a channel to do, you know, to
3:06
Speaker 2: process the anemas basically from the belly button process it
3:10
Speaker 2: down instead of going you know, the traditional enema route.
3:13
Speaker 2: So it was really like such a crazy, you know,
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Speaker 2: like twenty four hour period after kind of having that
3:22
Speaker 2: conversation with the surgeon and really understanding like where we
3:26
Speaker 2: were at as far as like we have no other option.
3:30
Speaker 3: They're like, well, you can do that or a colostomy bag,
3:33
Speaker 3: like that's it.
3:34
Speaker 2: Like, you know, it was just kind of like, obviously,
3:37
Speaker 2: we don't want to do that if that's not necessary.
3:40
Speaker 2: So you know, we just took like the next twenty
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Speaker 2: four hours.
3:45
Speaker 3: My husband and I talked about it and prayed about it,
3:48
Speaker 3: and we were.
3:50
Speaker 2: Super nervous, but we were like, Okay, we're going to
3:52
Speaker 2: move forward, and that's what we're going to do, because
3:56
Speaker 2: she cannot continue to sustain this kind of life, like
4:01
Speaker 2: there was no quality of life at this point. She
4:03
Speaker 2: had to We really couldn't keep her in gymnastics because
4:07
Speaker 2: she couldn't stay for even a fifteen minute class. She
4:10
Speaker 2: couldn't make it throughout the class. She was struggling, and
4:14
Speaker 2: we kind of had stopped going to church even because
4:17
Speaker 2: like we couldn't she couldn't go in the childcare, she
4:19
Speaker 2: wouldn't sit in the you know, in the church. So
4:21
Speaker 2: it's like all of these things and we didn't really
4:24
Speaker 2: realize at the time, like we were really not doing
4:26
Speaker 2: any of our daily like our normal life. But you know,
4:31
Speaker 2: looking back now, I'm like, wow, like we're able to
4:33
Speaker 2: do all of this stuff now that we weren't able
4:35
Speaker 2: to do then because we did go forward and do
4:38
Speaker 2: the loan surgery.
4:40
Speaker 3: So and it was.
4:42
Speaker 2: Crazy because it was literally they were like, Okay, well
4:46
Speaker 2: can you come next week.
4:49
Speaker 3: I was like, We're in Texas, They're in Ohio.
4:52
Speaker 2: I'm like, uh, I mean, go ahead and put us
4:56
Speaker 2: on the schedule.
4:56
Speaker 3: Let me see what I can do.
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Speaker 2: I mean, I am frantic because this is like Thanksgiving
5:02
Speaker 2: week and I'm like okay, And so I'm like trying
5:06
Speaker 2: to get everything scheduled and planned, and like I have
5:09
Speaker 2: goosebumps just thinking about it because I look back even
5:12
Speaker 2: in kind of those moments when I was at the hospital,
5:14
Speaker 2: when we were at the hospital, and kind of like
5:16
Speaker 2: just thinking back to our journey, I'm like, this was
5:19
Speaker 2: a total god thing that we were even able to
5:22
Speaker 2: get everything lined up perfectly.
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Speaker 3: To be able to leave and go have her surgery
5:27
Speaker 3: a week after. It was insane. It was insane, but
5:33
Speaker 3: we did.
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Speaker 2: We did it, and thankfully, like I don't know, I
5:38
Speaker 2: just feel like our angels showed up, Like our community
5:40
Speaker 2: showed up, our angel showed up.
5:42
Speaker 3: We got you know, my mom took care of the
5:44
Speaker 3: big kids. We flew and we actually got.
5:49
Speaker 2: Our flight completely covered, so we didn't pay for our
5:53
Speaker 2: airline flight at all because we were able to use
5:59
Speaker 2: like getting shaky just like talking about it, but we
6:02
Speaker 2: were able to use Delta Skywish and they give you
6:06
Speaker 2: donated sky miles and basically if you have a child
6:10
Speaker 2: that has a medical need and needs to travel.
6:15
Speaker 3: They have these miles that they're able to give you.
6:18
Speaker 3: So that was incredible.
6:20
Speaker 2: And then we were able to stay at Ronald McDonald
6:22
Speaker 2: house again, so that was our second time.
6:24
Speaker 3: To visit there.
6:25
Speaker 2: So it just all lined up and it just feels
6:28
Speaker 2: like I just get emotional thinking about it and revisiting
6:32
Speaker 2: like all of the process that we went through. But
6:35
Speaker 2: it felt like, oh my gosh, this is such a
6:37
Speaker 2: god thing to line up so perfectly for us to
6:39
Speaker 2: be able to do this.
6:40
Speaker 3: At this time.
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Speaker 1: Fantastic and just the people who are unsure about in
6:47
Speaker 1: terms of distance Texas to Ohio flight wise, how long.
6:52
Speaker 3: Was that And it was like a three a little
6:56
Speaker 3: over three hour flight. I would say, yeah, it's time.
7:01
Speaker 1: Yeah, that is an awful long time. And you just
7:04
Speaker 1: had to sort of drop everything and then and then
7:08
Speaker 1: away you went. I mean there was sort of and
7:11
Speaker 1: I guess when you kind of you're waiting on that call,
7:15
Speaker 1: you just kind of think, right, this is really really important.
7:18
Speaker 1: I just need to drop everything and bang away you go.
7:23
Speaker 3: Yeah, it was crazy. We definitely wanted to We wanted
7:28
Speaker 3: to get it done before the end of the year.
7:30
Speaker 2: They wanted to get it done as soon as possible
7:32
Speaker 2: once we made that decision, because they don't want her
7:34
Speaker 2: suffering any longer than she has to. There was also
7:37
Speaker 2: some medical concerns like if this continues, she could have
7:41
Speaker 2: other issues. So it was just like there was a
7:43
Speaker 2: huge sense of urgency. And then we also didn't want
7:48
Speaker 2: it to be too close to Christmas. He was like,
7:50
Speaker 2: there's no reason to have her in the hospital at
7:53
Speaker 2: Christmas time.
7:53
Speaker 3: So there was just a lot.
7:55
Speaker 2: That went into it, but I it definitely felt really
7:58
Speaker 2: supported throughout all of it, and the company I work at.
8:04
Speaker 2: They were so great too to just like you gotta
8:07
Speaker 2: do what you got to do, like family comes first,
8:09
Speaker 2: and that felt really incredible if.
8:13
Speaker 1: We carry along that line as well, because I know
8:15
Speaker 1: we were talking a little bit off air about the
8:17
Speaker 1: company you work for and you mentioned very briefly there
8:20
Speaker 1: about Ronald McDonald and the company you work for ended
8:27
Speaker 1: up donating towards Ronald McDonald. How did that sort of
8:31
Speaker 1: come about?
8:33
Speaker 2: Yeah, so every year we have a charitable donation program
8:38
Speaker 2: and we you know, everyone just kind of suggests whatever
8:42
Speaker 2: charity they want the money to go towards. And after
8:47
Speaker 2: sharing Charlie's story and how we were so impacted by
8:50
Speaker 2: Ronald McDonald house, that was that was overwhelmingly the vote
8:55
Speaker 2: for this year. So we were able to donate over
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Speaker 2: seventeen thousand dollars to the local Fort Worth Ronald McDonald house.
9:03
Speaker 2: So that was really amazing. And since then we are
9:07
Speaker 2: also in partnership to do other volunteer events with them.
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Speaker 1: So it's fantastic, fantastic, No, thank you so much for
9:14
Speaker 1: the company you work for. I don't know if you
9:15
Speaker 1: wanted to say their day or whatever, but yes, thank you,
9:20
Speaker 1: thank you so much to them because that's fantastic. Yeah,
9:23
Speaker 1: for sure, brilliant. And then I guess to carry on
9:28
Speaker 1: the story and back to back to Charlie and you.
9:32
Speaker 1: So you've made Plaska ahead and the surgery, you've flown
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Speaker 1: to Ohio. I know you took a few photos and
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Speaker 1: reels and I know you share them on Instagram as
9:44
Speaker 1: well about your time at Ronald McDonald's house. And I
9:50
Speaker 1: know you've been there before, but just in terms of
9:54
Speaker 1: your experience and in terms of it being such a
9:57
Speaker 1: special place to you, why why is it so special?
10:04
Speaker 2: I think because you know, when you're in such a
10:09
Speaker 2: hard place, you know, you're struggling so much because your
10:13
Speaker 2: child is not well.
10:15
Speaker 3: It was it.
10:16
Speaker 2: Just was like one last thing, one less thing to
10:19
Speaker 2: have to worry about, like a place to stay, coordinating
10:21
Speaker 2: a hotel, all of all of that. But it was
10:24
Speaker 2: so much more than that because you also have the community,
10:27
Speaker 2: you know, the other families that are there. I was
10:29
Speaker 2: able to connect with several different families and they also
10:33
Speaker 2: had children with Hirshprung's disease. So for the first time ever,
10:37
Speaker 2: you know, meeting someone that actually had a kid with
10:40
Speaker 2: Hirshprungs disease was incredible. We just you know, shared stories,
10:44
Speaker 2: we cried together, and even though only met you know,
10:48
Speaker 2: them for like one day or you know, got to
10:49
Speaker 2: see them a couple of days, it feels like I'm
10:52
Speaker 2: so close to them because we share something that's that
10:55
Speaker 2: I don't share with anyone else, and it's that shared
10:58
Speaker 2: experience of having, you know, a child with this disease
11:01
Speaker 2: nobody really understands, and so that was really cool. I
11:06
Speaker 2: wish that I would have had more, you know, time
11:08
Speaker 2: to spend with.
11:09
Speaker 3: Those families, because you know, the.
11:12
Speaker 2: Second time that we went, we were in the hospital
11:15
Speaker 2: most of the time, so my husband, Jordan would walk
11:19
Speaker 2: across the street. Well that's another thing, like it's so
11:22
Speaker 2: it's literally across the street from the hospital, so it's
11:24
Speaker 2: like it's so easy to access the hospital.
11:28
Speaker 3: But he would just walk across the street to sleep
11:30
Speaker 3: every night.
11:31
Speaker 2: But I would sleep in the hospital, so I was
11:33
Speaker 2: only really at the house like maybe two nights, the
11:36
Speaker 2: night before we went in surgery and then the night
11:38
Speaker 2: after we got released. So you know, didn't get to
11:41
Speaker 2: spend a whole lot of time there, but the time
11:43
Speaker 2: spent there, you just feel you feel loved, you feel supported,
11:50
Speaker 2: and it's it's nice to have that steady place that
11:54
Speaker 2: you know that you can rely on and count on
11:57
Speaker 2: to be there for you when you need a place
11:59
Speaker 2: to when you're at the hospital with your kiddo, you know.
12:03
Speaker 2: And Charlie loves it there, loves it. She was just
12:07
Speaker 2: telling me, like last night, I want to go back
12:10
Speaker 2: to the Donald Hotel. That's what we call it. She
12:12
Speaker 2: calls it the Donald Hotel. And so she loves it there,
12:16
Speaker 2: and it's fun for them. It's not like a hotel
12:20
Speaker 2: is fine and all, but this place is like a
12:23
Speaker 2: little resort for kids.
12:24
Speaker 3: Like they have all the playrooms, they have all sorts
12:27
Speaker 3: of stuff.
12:28
Speaker 2: For them to be a kid and like and to
12:31
Speaker 2: forget about the medical stuff they're going through, you know,
12:35
Speaker 2: and just have fun. I mean, that's what it's all about.
12:38
Speaker 2: It's like it is fun for her to stay there.
12:41
Speaker 2: She and it just amazes me that even though she
12:45
Speaker 2: went through all of this stuff like at the hospital
12:48
Speaker 2: while we were there, she still remembers the Donald Hotel
12:52
Speaker 2: being a fun place. And so that to me means everything.
12:57
Speaker 1: That's fantastic. And I know you mentioned as well a
13:00
Speaker 1: little bit about shared experiences with parents that have gone
13:06
Speaker 1: through her or having Hirshprung's children and surgery and whatever.
13:11
Speaker 1: And I get where you're coming from with that with
13:15
Speaker 1: talking to people about Hirshprungs, because it's fine talking to friends,
13:18
Speaker 1: talking to family, talking to other people with chronic illness,
13:21
Speaker 1: but it's not the same because when you talk to
13:24
Speaker 1: people with Hirshprungs, did you find that as well?
13:27
Speaker 2: Yeah, definitely, because it's so unknown, like nobody really gets it,
13:32
Speaker 2: and even explaining it, it's kind of like they're like,
13:35
Speaker 2: you know, they just don't get it because you haven't
13:37
Speaker 2: lived through it, and that's you know, obviously.
13:40
Speaker 3: They never could. But it's like.
13:45
Speaker 2: That shared experience of you know, having a child born
13:49
Speaker 2: with Hirshprungs and then getting diagnosed and then everyone's journey
13:54
Speaker 2: even with the disease looks so different. So it was
13:57
Speaker 2: also really cool to hear everyone's story and kind of
14:02
Speaker 2: how like their experience has been and what kind of
14:07
Speaker 2: journey they've had along the way, and others, you know,
14:11
Speaker 2: have other things going on other than Harshprung's, you know
14:13
Speaker 2: as well. Some some of them have additional diagnosises that
14:17
Speaker 2: you know, have made things even more complex, so you
14:22
Speaker 2: just you're just able to connect on a different level,
14:25
Speaker 2: I think, and it's.
14:26
Speaker 3: Really cool to like know, Wow, we're not alone in this,
14:30
Speaker 3: you know.
14:30
Speaker 2: Like it's nice to hear the stories that are on
14:32
Speaker 2: your podcast and know that like, oh wow, there are
14:35
Speaker 2: other options, Like she doesn't have to live like this forever.
14:40
Speaker 2: There are other avenues, There are other doctors out there,
14:44
Speaker 2: and so I think that that's really important for me
14:46
Speaker 2: to share as well, is that you know, at our
14:49
Speaker 2: local gi and local hospitals, they were not able to
14:54
Speaker 2: give us the care that she needed even though we're
14:58
Speaker 2: in a large metroplex. You know, it is not like
15:02
Speaker 2: we're in a small town where there's not resources and
15:05
Speaker 2: great doctors available. We're in a large metroplex and you
15:08
Speaker 2: think that you're in great hands, and maybe you are
15:12
Speaker 2: for other things, but with this specific disease, you need
15:18
Speaker 2: someone that really knows what they're talking about, and they
15:21
Speaker 2: put in the work and they have the experience and
15:24
Speaker 2: the years of knowledge to understand it. And I truly
15:29
Speaker 2: wish I would have known that at day two, you know,
15:33
Speaker 2: but you don't, and that I've given myself grace and
15:36
Speaker 2: I'm okay with that because I was doing the best
15:39
Speaker 2: I could with what I knew, and we thought that
15:41
Speaker 2: we were in the very best hands. But after you know,
15:45
Speaker 2: test after test and then not figuring out what's going
15:48
Speaker 2: on with her, I'm just I was just like, no,
15:51
Speaker 2: they they don't get it, and so it's time to,
15:55
Speaker 2: you know, just really do your research and find the
15:58
Speaker 2: doctor that's going to understand this disease and be able to.
16:02
Speaker 3: Help your kiddo.
16:04
Speaker 1: Most definitely, And again, for anybody who hasn't listened to
16:10
Speaker 1: your story up till sort of surgery that we're going
16:14
Speaker 1: to talk about in a moment, it really is worth
16:16
Speaker 1: a listen because your story is fascinating. And if you
16:21
Speaker 1: haven't gone back to listen to part one, please please
16:24
Speaker 1: do because it's a really, really good episode. But with
16:29
Speaker 1: Charlie and her surgery, he went for the ace malone surgery,
16:37
Speaker 1: a surgery that I had as well, and I know
16:39
Speaker 1: we talked about it at the end of your part
16:41
Speaker 1: one when you were thinking we should I do this?
16:43
Speaker 1: Should I do that? This is the same surgery that
16:47
Speaker 1: I had twenty and a bit years ago. I'm showing
16:51
Speaker 1: my age a little bit there, but would you like
16:55
Speaker 1: to talk a little bit about how the surgery about.
17:02
Speaker 3: Yeah, so.
17:05
Speaker 2: You know, it was really after we just tried everything
17:07
Speaker 2: that we could try and realize that we have to
17:11
Speaker 2: give this, this option a go, and it felt like,
17:16
Speaker 2: you know, it would be the best scenario for her
17:19
Speaker 2: to be able to continue to live, you know, her
17:21
Speaker 2: life and not have all of the distraction.
17:25
Speaker 3: And so it was, you know, it was a whirlwind.
17:30
Speaker 2: We got to Ohio, we stayed a night at Ronald
17:33
Speaker 2: McDonald house, and then the next day we went into
17:35
Speaker 2: the hospital and she started like the bowl prep, which
17:41
Speaker 2: was awful, awful, So if you just to know it
17:47
Speaker 2: is awful. That was probably one of the worst things
17:51
Speaker 2: that happened in the whole process, was just the bowl
17:54
Speaker 2: prep and getting everything out.
17:57
Speaker 3: Because she's three, and it was you know, she's like,
18:00
Speaker 3: doesn't understand it, and we had some issues.
18:05
Speaker 2: So they had to put a oh gosh, now i'm
18:08
Speaker 2: losing what it's called, but a tube down her nose. Yeah,
18:13
Speaker 2: and so they could give her the medicine and it
18:15
Speaker 2: would hit quickly to get everything cleaned out, and the
18:19
Speaker 2: tube wasn't placed in the right area, like it was
18:22
Speaker 2: clogged and stuck, and so it took like hours to
18:26
Speaker 2: figure out that it was stuck and that we had
18:29
Speaker 2: to then take it out and then redo it, and
18:32
Speaker 2: so it was just like those little things adding up
18:35
Speaker 2: to the surgery that was very, very challenging for her.
18:39
Speaker 2: And then it was like, okay, now we've got to
18:41
Speaker 2: get an x ray, make sure that that is in
18:43
Speaker 2: the right spot, and so getting an x ray and
18:46
Speaker 2: then you know, so it didn't get kicked off when
18:49
Speaker 2: it should have. It was way later in the night,
18:52
Speaker 2: and so we're literally doing bow prep all night long.
18:56
Speaker 3: Throughout the whole night.
18:58
Speaker 2: So it was just that was kind of challenging and
19:02
Speaker 2: she doesn't understand it and she's like freaking out.
19:05
Speaker 3: And then the ivy. You know, the ivy wasn't that
19:07
Speaker 3: bad for her. It was more so like the tube
19:10
Speaker 3: and it's yeah, all of that was awful, but we
19:13
Speaker 3: got through that.
19:14
Speaker 2: And then you know, it's really great at the hospital
19:17
Speaker 2: because they had playrooms on the floor, so we got
19:20
Speaker 2: to go to the playroom and play before she had surgery.
19:24
Speaker 3: And then she went to surgery. It was about an
19:27
Speaker 3: hour and a half that she was in there.
19:31
Speaker 2: And that's always like so nerve wracking because they text
19:35
Speaker 2: you with updates, which is great, but I'm like, why
19:39
Speaker 2: aren't they texting. They haven't texted in a long time,
19:42
Speaker 2: you know, Like it's just like it's great to get
19:44
Speaker 2: the updates, but then if I'm not getting them soon
19:46
Speaker 2: enough or enough, then I'm freaking out thinking why am
19:48
Speaker 2: I not getting an update? So so yeah, I'm just
19:52
Speaker 2: and then it's like hitting an hour and a half exactly,
19:55
Speaker 2: and I'm like, they said.
19:57
Speaker 3: It'd be about an hour and a half, it's an
19:58
Speaker 3: hour and a half.
20:00
Speaker 2: Are there, And I I just like had a major
20:05
Speaker 2: panic attack in the middle of this time period when
20:09
Speaker 2: she was back at surgery, panic attack, and I was
20:12
Speaker 2: in the waiting room. I was just bawling hysterically, and
20:16
Speaker 2: I'm like looking at my husband.
20:17
Speaker 3: I'm like, I don't know what to do.
20:19
Speaker 2: I can't come down, Like I'm freaking out because you're
20:22
Speaker 2: thinking about like the surgery that's happening itself, but then
20:24
Speaker 2: I'm thinking about what is this gonna.
20:26
Speaker 3: Look like afterwards? And are we making the right choice?
20:29
Speaker 2: And I mean, I'm just like I can't calm down.
20:33
Speaker 2: And so literally, right there in the wedding room, I
20:35
Speaker 2: just hit my knees and I just started praying. I
20:38
Speaker 2: just was on my knees praying and There's only been
20:41
Speaker 2: a few times in my life that I've done that,
20:43
Speaker 2: like just don't care where I'm at, I'm on my
20:46
Speaker 2: knees and I'm praying. And that was one of the
20:48
Speaker 2: times and I was like, I don't know what else
20:51
Speaker 2: to do, and so I am gonna just be here
20:54
Speaker 2: praying and so and then it wasn't long after that
20:57
Speaker 2: I started getting some peace and like calming down and
21:01
Speaker 2: then and then we went back. We were able to
21:04
Speaker 2: like go back to her the room because that's where
21:06
Speaker 2: they were going to bring her afterwards.
21:07
Speaker 3: So we went back to the room.
21:09
Speaker 2: We got some text updates that everything's going great, she
21:11
Speaker 2: came out of surgery fine. And then just that waiting
21:16
Speaker 2: of like oh my gosh, like waiting for her to
21:18
Speaker 2: come back felt like it took forever. But yeah, she
21:23
Speaker 2: came back and she woke up from the anesthesia and
21:27
Speaker 2: you know, all of all of the surgery was a success.
21:30
Speaker 3: So that was amazing.
21:33
Speaker 1: That's fantastic. And I think I think there's a lot
21:37
Speaker 1: of people that can sympathize with you there about the
21:42
Speaker 1: excuse me, the anxious wait for surgery, that that feeling.
21:48
Speaker 1: There'll be a lot of people listening to this episode.
21:50
Speaker 1: Who will know exactly what that feels like, that sort
21:54
Speaker 1: of that waiting for the doors to open or to
22:00
Speaker 1: get updates or anything like that. I think, and you
22:06
Speaker 1: describe I think the I think the panic attack really
22:09
Speaker 1: well because it's again I dare say, there will be
22:14
Speaker 1: people listening to this who will have gone through that
22:16
Speaker 1: experience as well, and that sort of feeling of there
22:20
Speaker 1: should be should be out by now. You know, they
22:23
Speaker 1: said it'd be an hour and a half. It's now
22:25
Speaker 1: one hour thirty five. You know, it should be done
22:28
Speaker 1: by now. And I think, I think that's that's a
22:36
Speaker 1: totally normal thing to think. I don't know of anybody else,
22:40
Speaker 1: but I think that's totally normal to to think, right,
22:43
Speaker 1: it's going to be this time and it isn't. So
22:46
Speaker 1: now I'm yeah, slightly or very worried.
22:52
Speaker 3: Yeah I am panicking, Yeah, absolutely. And my husband could
22:57
Speaker 3: handle it so much better than I could, because I.
22:59
Speaker 2: Was just like, obviously he's nervous too and feeling the
23:02
Speaker 2: same feelings, but I.
23:04
Speaker 3: Was not okay.
23:06
Speaker 2: I was just I didn't It was almost like an
23:09
Speaker 2: out of body experience, like this is not my life.
23:13
Speaker 3: I'm not in my body right now?
23:16
Speaker 2: What is happening where are And also I think, I
23:19
Speaker 2: mean just the whirlwind of like a week ago we
23:24
Speaker 2: found out that we were gonna do this and now
23:26
Speaker 2: we're here. I mean, I'm sure that all of that,
23:28
Speaker 2: you know, plays a part in the anxiousness as well,
23:33
Speaker 2: because it all seemed to happen so fast, so there
23:37
Speaker 2: wasn't a lot of time to process.
23:39
Speaker 1: Yeah, exactly, that was exactly the word I was going
23:41
Speaker 1: to use. You had no time to process within seven days,
23:46
Speaker 1: going from being at home doing everything normally to write bang,
23:50
Speaker 1: on a flight into hospital into surgery hour and a half.
23:55
Speaker 1: I mean, that's a lot to process in five six,
23:59
Speaker 1: seven days.
24:01
Speaker 2: Yeah, And also kind of maybe a good thing that
24:05
Speaker 2: it happened so quickly too, because I didn't have the
24:08
Speaker 2: time to think and worry and stress. Right, So I'm
24:11
Speaker 2: like it all happened in its timing because otherwise I
24:15
Speaker 2: probably would have like over overthought it and overdone it,
24:19
Speaker 2: and you know it would I would have just been
24:21
Speaker 2: more of a mess.
24:22
Speaker 1: So yeah, yeah, no, there are there are definitely pros
24:25
Speaker 1: and cons. Because if you had said, you know, it's
24:27
Speaker 1: going to be in a month's time, you've got thirty
24:30
Speaker 1: days to worry about it, whereas you've got you're actually
24:34
Speaker 1: too busy to worry.
24:36
Speaker 3: I guess, oh yeah for sure.
24:40
Speaker 1: But no, that's so in terms of the surgery where
24:43
Speaker 1: then Charlie woke up, she absolutely find she shall feel
24:49
Speaker 1: any different than she had before.
24:52
Speaker 3: No, not really. She woke up just fine.
24:56
Speaker 2: She everything seemed to like just be really smooth after
25:01
Speaker 2: the surgery. She was able to eat pretty quickly and
25:05
Speaker 2: she was able to like handle all the food and everything,
25:09
Speaker 2: so she was just happy. And then it was kind
25:12
Speaker 2: of like day two where it's kind of like, what
25:15
Speaker 2: is this thing in my belly? You know, like like
25:19
Speaker 2: just kind of really not happy about it, like, and
25:22
Speaker 2: she did not want to look at it. She didn't
25:24
Speaker 2: want anybody else to look at it. She wanted her
25:27
Speaker 2: you know, clothing to cover it. So that was challenging.
25:31
Speaker 3: And then we did the uh and then.
25:34
Speaker 2: There's lots of X rays and I'm like, I hate
25:36
Speaker 2: having to do all these x rays, but you know,
25:38
Speaker 2: an X ray before we did the flush, and then
25:41
Speaker 2: an X ray after we did the fly, like you know,
25:43
Speaker 2: just to make sure everything is processing fine, and.
25:46
Speaker 3: It all was.
25:47
Speaker 2: And so her first flush she did great and it
25:50
Speaker 2: worked well, you know, It was cool because the hospital
25:55
Speaker 2: is so collaborative and they have such a great team
25:59
Speaker 2: that we had, which is great. But also I think
26:02
Speaker 2: it was a little overwhelming for Charlie because we had
26:04
Speaker 2: like five people in the room, you know.
26:07
Speaker 3: So she's like, what is happening.
26:10
Speaker 2: But it was great because we had the support from
26:13
Speaker 2: all elements. You know, we had child Life, and we
26:17
Speaker 2: had a psychologist, and we had the physical therapy. You know.
26:23
Speaker 2: It was they were all helping us, like learn how
26:25
Speaker 2: to do this, and so hands on with teaching us.
26:30
Speaker 2: So that was really cool and beneficial because we learned
26:33
Speaker 2: a lot through that experience. And I really can't say
26:37
Speaker 2: enough about child Life because the child life specialist was
26:40
Speaker 2: amazing and.
26:44
Speaker 3: You know, just made it fun for Charlie.
26:46
Speaker 2: Brought in all sorts of other things to like distract
26:48
Speaker 2: her and Plato and you know, all sorts of stuff.
26:51
Speaker 2: So that was cool and a fun distraction for her
26:54
Speaker 2: to get to play and and do her flesh.
26:59
Speaker 3: So yeah, it worked well.
27:01
Speaker 2: And then we were out of the hospital and backet
27:04
Speaker 2: Ronald McDonald's house for one or two more nights after that,
27:07
Speaker 2: just to make sure that everything.
27:08
Speaker 3: Was good before we flew home. I was kind of nervous.
27:11
Speaker 2: I'm like, how soon can we leave because I don't
27:14
Speaker 2: want to leave too soon, and then like need y'all.
27:17
Speaker 2: But they're like everything's good. After a day, you're good.
27:21
Speaker 2: I'm like, okay, So I was worried about the flight. Yes,
27:27
Speaker 2: she is fine, you know, I'm so after she had
27:30
Speaker 2: them alone. She has a tube coming out of her
27:33
Speaker 2: belly button and it's pretty long, so it's looped around
27:36
Speaker 2: and then stuck on with tape taggert RM tape, and
27:41
Speaker 2: then it's kind of hanging, you know.
27:42
Speaker 3: On the side.
27:43
Speaker 2: And so she's got like this thing hanging and it's
27:46
Speaker 2: got like two ends and one of them is where
27:49
Speaker 2: you unplugg to do the flush, and it's kind of
27:52
Speaker 2: like a cap that's put on there to plug it.
27:53
Speaker 3: Up, but it's kind of big and it's hanging and
27:56
Speaker 3: she's three. So I'm like, oh my god.
28:00
Speaker 2: Yeah, I was so worried that that thing that too,
28:02
Speaker 2: was going to get yanked out. And there were several
28:07
Speaker 2: moments where I was like scared to look because she
28:10
Speaker 2: had a big crash, you know, she fell, and I'm.
28:14
Speaker 3: Like, okay, let me see if it's still there.
28:17
Speaker 2: And peek up and it's there, so you know, we're
28:20
Speaker 2: all good. But yeah, that was kind of terrifying. Literally
28:24
Speaker 2: the first day we got home, we have like this
28:26
Speaker 2: half wall and she does like a backflip off of
28:29
Speaker 2: it and lands on.
28:30
Speaker 3: The tile and I'm like, oh my god. Yeah, so
28:34
Speaker 3: but we survived that, so that was good.
28:36
Speaker 1: Yeah. I think you've mentioned before how she's a very
28:40
Speaker 1: active three year old as well. I'd seen you You've
28:43
Speaker 1: posted bits and pieces of her doing gymnastics. I know
28:47
Speaker 1: you said that she couldn't do the fifteen minute gymnastics
28:51
Speaker 1: because of your various worries. Is she back to doing
28:56
Speaker 1: gym now?
28:57
Speaker 3: Yes, she is back to gymnastics. Loves it.
29:02
Speaker 2: That was the whole thing, because when did she get back.
29:05
Speaker 2: I think she went back in January.
29:08
Speaker 3: Yep.
29:08
Speaker 2: So we had to go back to Ohio in January
29:12
Speaker 2: to get her tube that was in taken out and
29:16
Speaker 2: the chaate tube replaced it. So now she has the
29:21
Speaker 2: tube isn't coming out of her belly anymore. It's just
29:23
Speaker 2: like this little trapdoor situation on her belly button.
29:26
Speaker 3: So it's like a button. We call it a belly
29:28
Speaker 3: button button.
29:29
Speaker 2: And so we went so back to Ohio in January
29:34
Speaker 2: to have that done. And so when we got back
29:38
Speaker 2: from that trip, we got her back into gymnastics. I
29:43
Speaker 2: did not want the hanging tube at gymnastics. I could
29:46
Speaker 2: not handle that.
29:47
Speaker 3: So we waited. But what's cool about the.
29:52
Speaker 2: Trip in January is we were able to bring all
29:55
Speaker 2: the kids, So the two older kids went with us.
29:58
Speaker 2: We took a road trip and we just thought it'd
30:02
Speaker 2: be important for them to kind of see that part
30:05
Speaker 2: of our lives with Charlie because they had not experienced it,
30:11
Speaker 2: and and Charlie was so excited to show them. So
30:14
Speaker 2: we stayed at round On McDonald house and it was
30:16
Speaker 2: only a couple of nights stay that time, but it
30:19
Speaker 2: was cool for them to get to like experience that,
30:22
Speaker 2: and Charlie loved showing them around. It was like this
30:27
Speaker 2: is that, and like showing them everything that she, you know,
30:31
Speaker 2: knew about in her previous visits. And then she walked
30:33
Speaker 2: around the hospital like she knew where everything was and
30:36
Speaker 2: like she was just showing them all around. It was
30:39
Speaker 2: so cute, but it was special for them to get
30:42
Speaker 2: to see that and be a part of that journey.
30:44
Speaker 1: So yeah, but I guess that's that's her thing, isn't it.
30:48
Speaker 1: That's that's her thing that she's only done with with
30:51
Speaker 1: you and Jordan, and that you know, the your other
30:56
Speaker 1: other children haven't haven't seen her thing, which is yeah,
31:00
Speaker 1: the Donald Hotel.
31:02
Speaker 3: Yes, the Donald Hotel. It's her, it's her place. So yeah,
31:06
Speaker 3: it was really fun. And you know, they're always.
31:09
Speaker 2: Doing so many cool like events for the families there,
31:13
Speaker 2: and so the night that we went, they actually had
31:16
Speaker 2: a Columbus Blue Jackets hockey player. They're playing bingo, so
31:22
Speaker 2: he was doing the little bingo thing. And we're big
31:25
Speaker 2: hockey family, so my son plays hockey and we're Dallas
31:29
Speaker 2: Stars fans, and so my husband had on like a
31:33
Speaker 2: green Dallas Stars thing and so he the player kept
31:36
Speaker 2: eyeballing him, and so it was just it was a
31:38
Speaker 2: whole thing and it was fun and Charlie like asked
31:41
Speaker 2: to do the little spinner for the bingo.
31:44
Speaker 3: And it was just so cool.
31:46
Speaker 2: It's nice that they do a lot for the families
31:48
Speaker 2: just you know, to kind of entertain and keep their
31:52
Speaker 2: mind off of.
31:53
Speaker 3: Maybe what's going on medically. So that was.
31:56
Speaker 1: Fun, absolutely absolutely, and I think you sentiments of a
32:00
Speaker 1: lot of people who come on here and they're so
32:03
Speaker 1: so grateful for Ronald McDonald and I know I had
32:09
Speaker 1: some from Ronald McDonald UK come on as well and
32:11
Speaker 1: talk about what they do and Jazz who came on
32:14
Speaker 1: and spoke really well about Ronald McDonald. So yes, we are.
32:17
Speaker 1: We are huge fans of Ronald McDonald house at this podcast.
32:22
Speaker 1: So in terms of you explain what Charlie's had and
32:27
Speaker 1: how she's back to doing her gymnastics, now, was there
32:32
Speaker 1: kind of a future plan that you were given or
32:35
Speaker 1: was it sort of more of a tentative we'll see
32:38
Speaker 1: how we go type thing.
32:42
Speaker 2: Yeah, so it's kind of will see, wait and see
32:45
Speaker 2: how things go. We were kind of told that as
32:49
Speaker 2: she grows older she.
32:50
Speaker 3: Could gain function and.
32:52
Speaker 2: Not need them alone anymore, and we're told that that's
32:55
Speaker 2: usually around like puberty time the body is changing, there
32:59
Speaker 2: might be a gain gained function there. So we're kind
33:04
Speaker 2: of gonna take it just day by day and see
33:06
Speaker 2: how things go and and if there's that time period
33:10
Speaker 2: where we think that things have changed, then we'll try
33:13
Speaker 2: that out and see if we were able to possibly
33:16
Speaker 2: move away from them alone.
33:18
Speaker 3: But you know, right now, it's kind of it's kind
33:22
Speaker 3: of unknown, which.
33:22
Speaker 2: Is kind of scary because she could do this forever,
33:26
Speaker 2: need this forever, which is not the worst thing in
33:28
Speaker 2: the world. As long as it continues to work well
33:31
Speaker 2: like it has been, then it gives her, you know,
33:36
Speaker 2: that quality of life that she doesn't have to worry
33:40
Speaker 2: about like constantly pooping, you know. So that's nice in
33:44
Speaker 2: a way. It's like, I'm so grateful for it. It's
33:48
Speaker 2: so we don't know, maybe like it's kind of like
33:51
Speaker 2: the doctor's like, miraculous things happen, and it would be
33:55
Speaker 2: something pretty miraculous if she was to gain function.
33:59
Speaker 3: But I'm praying for the miracle to happen, so we'll see.
34:03
Speaker 1: Absolutely. I hope so as well. I mean, I know
34:06
Speaker 1: you mentioned in the first episode that Charlie's missing a
34:11
Speaker 1: large portion of her dentate line. Is it eighty percent?
34:14
Speaker 1: You said, yeah, so obviously that then it's caused a
34:20
Speaker 1: lot more more complications. But no, I really hope that
34:27
Speaker 1: that the malone works. Has it kind of so so far,
34:31
Speaker 1: I know it's only been a couple of months since
34:35
Speaker 1: she had the surgery, and how is she getting along
34:39
Speaker 1: with it?
34:41
Speaker 2: She's doing really well all things considered, especially with her
34:45
Speaker 2: being three, So so she it's working well. So she
34:53
Speaker 2: does one daily flush and it gets everything out and
34:56
Speaker 2: she is clean for twenty four hours.
34:58
Speaker 3: So that has been amazing.
35:03
Speaker 2: The challenging part is that, you know, she has to
35:06
Speaker 2: sit for forty five minutes on the potty every night,
35:10
Speaker 2: and so that's been a little challenging because nobody really
35:15
Speaker 2: wants to have to do that, but to be three
35:17
Speaker 2: and be busy and have, you know, things to do,
35:20
Speaker 2: and you know, wants to just play. She doesn't want
35:24
Speaker 2: to spend that time on the potty.
35:27
Speaker 3: So some nights are harder than others, but she, I
35:30
Speaker 3: think is getting more used to it.
35:31
Speaker 2: And it's funny because some nights, you know, We've got
35:36
Speaker 2: a whole setup, so I've got squatty potty for her
35:39
Speaker 2: feet to sit on, She's got her little seat that
35:42
Speaker 2: goes over the toilet, and then she has a little
35:45
Speaker 2: table that I put in their so she has a table.
35:48
Speaker 3: We have toys playto, like all sorts of things to
35:51
Speaker 3: entertain her.
35:53
Speaker 2: And some nights she gets so busy playing she it's
35:56
Speaker 2: like time is up, you can, like, we can.
35:58
Speaker 3: Get out of the bathroom now, oh, and she just
36:01
Speaker 3: wants to keep playing.
36:02
Speaker 2: And so I'm like, like she just gets so involved
36:04
Speaker 2: and that's great because I'm like, Okay, she's not even
36:07
Speaker 2: caring that she's sitting on a party anymore. She's just
36:10
Speaker 2: having fun playing, and so you know, sometimes that's the
36:13
Speaker 2: struggle is like actually getting her to get off the
36:15
Speaker 2: party so she's overall she's doing really really good.
36:19
Speaker 1: That's fantastic. I think that's interesting. You mentioned about having
36:24
Speaker 1: distractions and having you know, something there to do, because
36:28
Speaker 1: it can it can be swinging to many people who've
36:31
Speaker 1: gone through the same sort of you know whatever washouts,
36:34
Speaker 1: they do have that sort of set up in system
36:40
Speaker 1: as well, because it can be a long time. I mean,
36:43
Speaker 1: forty five minutes for a three year old is like
36:45
Speaker 1: three weeks, so it's it can be it can be
36:49
Speaker 1: an awfully long time. So I think I think that's
36:52
Speaker 1: that's a really good idea. And if if anybody takes
36:55
Speaker 1: anything else away from this podcast, I think that's something
36:58
Speaker 1: that's that's really really important to sort of make sure
37:02
Speaker 1: that there are you know, distractions, things to do and whatever.
37:07
Speaker 1: I think that's that's brilliant. Another last little point and
37:12
Speaker 1: make as well. You when when you went back to
37:15
Speaker 1: Ohio and I'm jumping all over the place a little
37:17
Speaker 1: bit here. Did you go back to see doctor Wood again? Yeah,
37:23
Speaker 1: we did excellent. And because I know you saw doctor
37:27
Speaker 1: Wood last time, and he he comes. I've never met
37:29
Speaker 1: the guy, I've never spoken to him, but he comes
37:31
Speaker 1: very highly recommended, and I presume that, you know, when
37:34
Speaker 1: he explained everything, having that sort of continuity was was
37:41
Speaker 1: very reassuring.
37:43
Speaker 3: Yes, for sure.
37:44
Speaker 2: And I would say along with that, like his whole
37:47
Speaker 2: team is so great. You know, they're always so quick
37:50
Speaker 2: to respond.
37:53
Speaker 3: You know.
37:54
Speaker 2: The first couple of nights after we left the hospital,
37:58
Speaker 2: when we went back the last time in January, we
38:01
Speaker 2: have the you know, the little chat tube or whatever,
38:04
Speaker 2: and I'm like, the button is like this, and then
38:08
Speaker 2: all of a sudden, I look after she showered and
38:10
Speaker 2: it's like this, and I'm like, okay, is that normal?
38:14
Speaker 2: You know, Like I'm just I'm so oversensitive about medical
38:19
Speaker 2: stuff with her, and so I'm just thinking, like is
38:22
Speaker 2: that okay?
38:23
Speaker 3: I don't know.
38:24
Speaker 2: So I'm messaging the the I'm messaging the hospital.
38:28
Speaker 3: It's like ten pm, eleven pm, you know, and they.
38:31
Speaker 2: Get back to me right away, and they're always able
38:33
Speaker 2: to like ease my mind and.
38:34
Speaker 3: They're like that can be normal. It's totally fine.
38:37
Speaker 2: You can turn it back, but it's fine, and I'm like, okay,
38:41
Speaker 2: then like tm I but like our second time doing
38:45
Speaker 2: a flush by ourself.
38:47
Speaker 3: All of a sudden, there's poop like coming.
38:49
Speaker 2: Up through the tube and I'm like freaking out. Nobody
38:53
Speaker 2: told me that this could happen, you know.
38:55
Speaker 3: I'm like, is this okay?
38:58
Speaker 1: You know?
38:58
Speaker 2: So I message them and they're like that it's totally
39:00
Speaker 2: fine that can happen, and so I'm like, okay, well.
39:03
Speaker 3: I mean, I guess like everything's fine.
39:05
Speaker 2: I need to stop like being so worried about every
39:08
Speaker 2: little thing because it's all good, Like no worries.
39:12
Speaker 1: That's again normal though that's like I think again, a
39:15
Speaker 1: lot of people will sympathize it being in your situation.
39:19
Speaker 1: This is Heirsprung's is not necessarily something you can just
39:24
Speaker 1: google and go what do I do next? It's not
39:27
Speaker 1: It's not really like that.
39:30
Speaker 2: No, it's not at all. So I'm grateful that the
39:33
Speaker 2: team is so response like responsive. Shout out to Nurse
39:37
Speaker 2: Jackie because she's the one that usually responds very quickly,
39:41
Speaker 2: and especially like at night on the weekends, she gets
39:44
Speaker 2: back to me.
39:44
Speaker 3: So I'm like, okay, I can breathe.
39:46
Speaker 2: You know, when she had the temporary tube at first,
39:52
Speaker 2: there were you know, just things that came up with that,
39:56
Speaker 2: and I'm like taking pictures and sending it and I'm.
39:59
Speaker 3: Like, is this okay? Is this normal? Like? And they're
40:03
Speaker 3: always just so great and so quick to get back
40:05
Speaker 3: to me.
40:06
Speaker 1: Fantastic. No, that's that's really really good to hear that
40:09
Speaker 1: you've got someone on the end of the phone who
40:12
Speaker 1: can just say yes or no, rather than saying, oh,
40:16
Speaker 1: I'll check or I'll get back to you in a
40:18
Speaker 1: week or you know something like that. Oh, that's that's
40:22
Speaker 1: incredibly reassuring. No, that's fantastic. And then I guess lastly,
40:27
Speaker 1: I know we've talked a little bit about medically, you know,
40:31
Speaker 1: where where you think Charlie, well, where Charlie is at
40:35
Speaker 1: the moment, and where you'd kind of like her to be,
40:38
Speaker 1: whether you stay with them alone, whether you whether you're
40:43
Speaker 1: but eventually you know, and she gets a bit older,
40:46
Speaker 1: whether you tend to reverse or change or whatever that
40:51
Speaker 1: might be. And I guess it's in terms of the
40:56
Speaker 1: near future, what would you what would you like for
41:01
Speaker 1: Charlie in the next Yeah, couple three years or so.
41:07
Speaker 2: Yeah, I think, I think I want to see her
41:12
Speaker 2: just continue to grow and thrive. It was like, I
41:18
Speaker 2: didn't think that, you know this, the challenges before the
41:22
Speaker 2: malone were impacting her that much because she was still
41:25
Speaker 2: such a happy, positive, energetic kiddo. But we did see
41:30
Speaker 2: a change after them alone. We saw like this new
41:33
Speaker 2: sense of energy, this new sense of life, So.
41:36
Speaker 3: That was really amazing.
41:37
Speaker 2: I want to see her continue that spirit, just be
41:41
Speaker 2: true to herself, and I want to see her, you know,
41:46
Speaker 2: use this and it'll be years and years until she's
41:49
Speaker 2: able to probably like use this and share her story
41:52
Speaker 2: and her journey and help others.
41:54
Speaker 3: But I want to see her.
41:56
Speaker 2: You know, turn this into something that that helps others
42:01
Speaker 2: in the future. You know, she's so resilient and I
42:05
Speaker 2: think that I see that continuing in her life. I
42:08
Speaker 2: know that these challenges will just make her stronger. So
42:12
Speaker 2: I want to continue to see her just blossom.
42:15
Speaker 1: Absolutely, And I very nearly forgot, and you've just said
42:18
Speaker 1: something and reminded me, so thank you. There is something
42:23
Speaker 1: that you are currently working on to do with Charlie
42:29
Speaker 1: and her story. Would you like to talk a little
42:31
Speaker 1: bit about that as we finish.
42:33
Speaker 2: Yeah, I love too So I am working on a
42:36
Speaker 2: children's book that is all about Charlie's story, and so,
42:43
Speaker 2: you know, a lot of different reasons for this, but
42:45
Speaker 2: one of them is so that Charlie has that book
42:48
Speaker 2: and it's a memory for her, so that she can
42:52
Speaker 2: kind of look back and see all the things that
42:54
Speaker 2: she accomplished and all the things that she went through
42:57
Speaker 2: and really the bravery that she has had to get
43:01
Speaker 2: through all of that in such a such a spunky,
43:04
Speaker 2: like feisty spirit that she is. But it's also to
43:10
Speaker 2: help other kids out there that either have hirshprings disease
43:13
Speaker 2: or they have something rare that others might not understand.
43:18
Speaker 2: It's it's so that they understand themselves a little bit better.
43:21
Speaker 3: But they also know that everyone you know has has
43:26
Speaker 3: a unique has a.
43:28
Speaker 2: Unique story, and you don't have to be just like
43:31
Speaker 2: everyone else. It's okay to be different, and you know,
43:36
Speaker 2: learn how to accept yourself for how you are and
43:38
Speaker 2: who you are, and just have the bravery, you know,
43:42
Speaker 2: to go.
43:42
Speaker 3: Through hard things.
43:44
Speaker 2: So with the book, I'm also going to be asking
43:48
Speaker 2: other families that have kiddos with hirshpurns disease if they
43:52
Speaker 2: like to be in the book because at the end,
43:55
Speaker 2: I'm going to have stories of other people's journey with
43:58
Speaker 2: Hirshprungs and kind of highlight them pictures and that sort
44:01
Speaker 2: of thing and share their story so that you know,
44:04
Speaker 2: everyone can can know that they're not alone, because in
44:09
Speaker 2: you know, in this it feels it's very easy to
44:12
Speaker 2: feel like you're alone, and so I want others to
44:17
Speaker 2: know that they're not alone in this and that you
44:20
Speaker 2: can get through.
44:21
Speaker 1: It fantastic And I wish you all the best with
44:24
Speaker 1: that because I know we come from the same place
44:27
Speaker 1: when getting people to not feel alone, and I think
44:30
Speaker 1: that's that's incredibly important. I just wanted to say thank
44:34
Speaker 1: you so much for coming on again. It's been great
44:37
Speaker 1: to hear Charlie's update, to hear that she's doing really
44:42
Speaker 1: really well, to hear that everything's you know, going in
44:45
Speaker 1: the right direction, really positive for the future. So thank
44:49
Speaker 1: you so much for providing an update, and and I
44:53
Speaker 1: wish you, Charlie and the rest of your family all
44:56
Speaker 1: the very very best for the future.
44:59
Speaker 3: Thank you so much.
45:00
Speaker 2: Thank you for allowing me to give an up date,
45:02
Speaker 2: and thank you for having this platform my pleasure.
45:09
Speaker 1: Thank you for listening to the podcast. Find us on
45:12
Speaker 1: Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes
45:17
Speaker 1: on Spotify by searching Tom's Hirshbrun's podcast