Building a Resource for Every Family: The Story of WonderBaby with Amber Bobnar

Luisa Recchia: [00:00:00] Welcome to Through Our Eyes, the podcast of the Pediatric Retinal Research Foundation, where we share stories, resources, and real life experiences from individuals and families living with pediatric retinal conditions. Today I’m honored to be joined by Amber Bobnar, founder of Wonder Baby. Created Wonder baby.org in 2006, after her son Ivan, was diagnosed with LCA, a rare retinal disorder, and she found herself searching for support, answers and connection.

What began as one mother’s effort to gather helpful information has grown into a meaningful resource for parents of young children with visual impairments and children with multiple disabilities. Amber, thank you so much for being here with us today.

Amber Bobnar: I’m Amber and my son is Ivan. He is 20 years old now. [00:01:00] So we’ve been on this journey for a long time. The website is something I started when he was about six months old, so in 2006, early 2006.

At the time I was working for a web publishing company, and we are actually in the process of creating a fake homeschool website. And so I was having to pretend to be a homeschooler and then I thought, I’m sitting here with like real life experience and something that could actually benefit others if I shared what I’m learning with my son rather than doing this fake homeschooling website.

So I ended up quitting that job and, but I had the experience of, you know, creating like a basic website. And it’s funny to think, but 20 years ago the internet was still pretty new, you know, so. It was like basic HTML and PHP, and I just put this site together. It was based a lot on my connection with other parents through an email [00:02:00] listserv at the time.

Which is also funny because this is like pre-Facebook. I think this is even pre YouTube, you know, so there weren’t any Facebook groups, there weren’t any really online support groups, but there were email listservs through Yahoo. And so I joined a group for parents of kids with LCA. There are also a lot of adults with LCA, that’s Leber’s congenital amaurosis.

And there was just this like plethora of information and I had felt like I was so lost and so isolated trying to figure out what I was doing with this baby who, you know, pretty early on we were sure was blind, but I, I didn’t know what I was supposed to be doing. And then I, I get into this group and there’s just these very supportive families and adults and people with just so much information and I thought.

It’s a shame that this is like hidden, you know, like you can’t go into Google and search for this ’cause it’s in a, a private listserv. So I just started gathering stuff, you know, with people’s permission [00:03:00] and saying like, Hey, would it be okay if I shared this and writing articles. There was a lot of stuff happening in the genetic research, you know, world at the time, and I wanted to write about that.

And so I just started putting it together into a website and, and it really took off. People loved it and. And, you know, it’s still online. It’s been, it’s been about 20 years.

Luisa Recchia: Wow. That’s amazing. Looking back, what do you wish someone had said to you in the early days when Ivan was first diagnosed?

Amber Bobnar: Somebody did say to me what I wish somebody had said, I just wish I had listened. There was somebody who I got to know pretty well in this listserv and he was an adult and had LCA and at the time.

I was just so concerned with Ivan’s development, you know, like that was the word, the two words, development and resources. I needed resources so that I could help Ivan’s development, and he kept saying. Kids develop, [00:04:00] like it doesn’t matter, like he’s gonna develop. All he needs is you and your support and your love and your family.

And I’m like, no, I need to find the right therapists. I need to find the right doctors. I need to read the right books. I need to watch the right videos, and you know, what are the resources and which is what I was trying to do at the website. It was like gather the resources so that people can help their children develop.

And he kept saying, you don’t need to do all that. You just need to love him and mm-hmm. It was years later after I had moved away from my family, which I wish I had never done. And was isolated again, and, and, but was connected with the resources, you know, which is what we were trying to do.

And I, I wrote back to him, I was like, you know what? You remember when you said that to me like 10 years ago? You were so right.

Luisa Recchia: So for those that are listening that are not familiar with LCA.

Tell us a little bit about what it is, how it impacted Ivan and, and yourself.

Amber Bobnar: Well, so Ivan has multiple diagnoses at this point. But in the beginning he was diagnosed [00:05:00] with LCA Leber’s congenital amaurosis, and it’s a retinal disorder. It’s, uh, inherited. Retinal disorder. So, and he, there’s multiple layers of how much vision someone with LCA may or may not have.

But he has no vision, no light perception. So he has essentially the, kind of the most extreme version of LCA. And usually most kids with LCA do not have any additional comorbidities with that. They are, you know, quote unquote just blind. And when Ivan was a baby. You know, we’re looking at a child who, he did have some respiratory issues at birth, but those seemed to kind of clear it up.

And so we knew he was having difficulty tracking, didn’t seem to respond to flashlights, so we’re trying to figure out what he could have that would be something that he was born with that causes blindness without anything else. And I mean, LCA kind of just pops up to the top if you’re not looking at, you know, prematurity or other [00:06:00] issues.

So he was tentatively diagnosed pretty young, but he wasn’t officially diagnosed until he was about a year old. He was born in Hawaii, we’re from Hawaii originally.

Luisa Recchia: Mm-hmm.

Amber Bobnar: And the resources just weren’t there medically to diagnose him. Like we couldn’t do the ERG, the electroretinogram, which is used diagnostically.

So we had to go to the mainland and. I had connected with these families in the Yahoo Group and they were doing a conference in Cleveland when he was about a year old. So we applied for some grants so that we could fly our family out to Cleveland and meet with these doctors and actually get a diagnosis.

But when he was about two years old. Because when we moved to the mainland, we moved to Boston. We wanted to be closer to Boston Children’s Hospital and to Perkins School for the Blind, and that’s when I left my family behind, which I wish, looking back on it now, I really think being around family is more important than being around a [00:07:00] hospital or a school.

Um. Now we’re here now, so we, we’re still here and we’ve had some family move out to be closer to us, so that’s nice. And we’re kind of rooted here now, but I would not recommend doing that to take a 2-year-old special needs baby away from his family so that you can be closer to a hospital, um, but when we moved here, we were able to connect with geneticists and a neurologist. And he was diagnosed with Joubert Syndrome as well when he was about two which we were starting to suspect because he wasn’t developing physically, you know, like, his very low muscle tone not walking. Which can definitely be delayed in kids who are born blind, but it was like very, very delayed in him.

And Joubert syndrome is, can be genetically connected to LCA, it’s relatively rare, but there are definitely kids that have both and it’s a neurological disorder. So part of his [00:08:00] brain didn’t develop the part that controls motor function and, and muscle tone. And then when he was about three and a half, he started to develop seizures.

And now if you were to ask me what’s Ivan’s diagnosis? I’d say he has refractory epilepsy. The Joubert and the blindness are like, so minimal compared to epilepsy. ’cause epilepsy is difficult, very difficult.

Luisa Recchia: For a parent who may just receive a diagnosis, um, and of course, if you recall, probably feeling very overwhelmed. Um. Where would you recommend them to begin? I know you mentioned, you know, family is key. But what advice would you give them?

Amber Bobnar: For some reason, I remember the blindness really not scaring me because I just kept thinking there are blind people. There’s all sorts of ways. There’s like, there’s accommodations, you know? Mm-hmm. So I, I [00:09:00] was, like I said, I was concerned about his development because I kept thinking you. As a baby, you’re gonna learn through vision.

So how do I accommodate his learning through other senses? But I remember when he was diagnosed with Joubert syndrome that I just, like, I broke down and I, I remember crying and having to remind myself that yesterday. I didn’t know he had Joubert Syndrome, but he’s the same kid today. I know he does. He’s the same kid.

Like he hasn’t changed, you know, and there’s no reason for me to all of a sudden have this. I don’t know this, like, I mean, the emotional response is natural. I’m not gonna say you shouldn’t do that, but to try and look at it as this, you know, beautiful 3-year-old, 2-year-old boy. And know that like he’s still him and he still needs love and like [00:10:00] that is the more important thing to focus on.

I don’t know. Does that make sense?

Luisa Recchia: You know what? That makes wonderful sense. Uh, I love how you put that in perspective yesterday before you knew the diagnosis and the day you learned about the diagnosis. I mean, it’s still him. Yeah, Ivan was still Ivan

Amber Bobnar: and he doesn’t know that anything changed.

Luisa Recchia: Right.

Amber Bobnar: You know, he doesn’t know that, oh, today my mom got a phone call from a doctor and now my entire life has changed and my entire trajectory has changed. He’s the same kid, you know, and he’s still doing the same thing and he is still liking the same foods and the same music. And you know, like just because I am like dealing with a different set of, I don’t know, parameters.

That, I’m gonna think that our relationship is different in some ways, you know what I mean? Like it’s, I just, I remember really like all of a sudden stopped crying and was like, he’s the same [00:11:00] kid. What am I doing?

Luisa Recchia: How about advocating for him? How would it, how did you find strength and, and the know-how to be able to advocate for him, not only in the medical area, but in education and support settings.

Amber Bobnar: Medical was difficult. Because I like to say we lived in a very rural part of a very rural state. So there just wasn’t a lot available.

And our pediatrician just kept telling us, there’s nothing wrong, there’s nothing wrong. He’s fine. You’re, you’re fine. Just take him home, don’t do anything. And we’re like, we wanted the diagnoses. And our main concern was what if there’s something going on that if we gave him this specific pill right now, it would stop the progression or whatever.

Which. Is like, does that even happen? Maybe, maybe. I don’t know. That’s not what he had. But you know, it was like this race to get a diagnosis just so that we could at least know there wasn’t anything [00:12:00] we were missing, something we should be doing. And this pediatrician, like he wouldn’t put in the referrals for us.

And then when we would get it, like there was no pediatric ophthalmologist on the island we were on, there was no pediatric neurologist on the island. There was no way to do an MRI on the island. We were on, everything had to go. To a different island, which meant airplanes and hotels and it was a big it was a lot.

Which is part of the reason why we moved, right? Because we wanted to be somewhere where there was a hospital right there and we could get the information we needed. But there was also a lot of, like, I remember calling an ophthalmologist who was an adult ophthalmologist, didn’t see babies, but was in our town and.

Just explaining to the receptionist that I really wanted this woman. ’cause she had really good credentials too, and I really wanted this woman to see my son and the receptionist saying, well, you know, we don’t see two month old babies and getting her to allow [00:13:00] me to speak to the doctor so that I could talk to the doctor on the phone.

And she said, okay, I’m gonna squeeze you in like I, I feel for you. Right? I’m gonna squeeze you in. But like it is a busy office. And then going down to our office and me and my husband and Ivan being in this office for hours, waiting for her to have the chance to finally see us. It was after hours by the time she was actually able to see us.

And then she, you know, dilated his eyes and looked at his retina and was like, I think I see something. ’cause there’s like marks on the retina when you have LCA. She goes, but. I’ll be right back. And then she was gone for a really long time and we’re sitting in the, like by this point, lights are going out.

I think a janitor even came in. She comes back and she’s like, okay. I was speaking to, you know, these colleagues on the mainland and coordinating with them and founded this information in this book here. And I think I can say pretty definitively that your son probably does have LCA. Um, he needs to get an ERG if he can [00:14:00] manage that to get officially diagnosed.

But like, it was just a matter of essentially just sitting in this office and like really pushing for someone to see him and do what we needed to have done. So medically it was, it was definitely, it’s just persistence in terms of advocating. Um, and then also in terms of like therapies. I’m so, I’m so concerned about his development and I’m talking to his pediatrician who’s not very helpful, and I’m like, well, what am I supposed to do?

Okay, so he’s blind, right? What am I supposed to do? And he goes, zero to three. And I was like, what? He goes zero to three. I go, I like 9 1 1 is the number you call in an emergency. Zero. Two three is the number you call when your baby’s blind. I don’t know what you’re saying. You know, and he goes, no, it’s a program.

And he walks out of the office and comes back and hands me a pamphlet for the Zero to Three early intervention program, which if you’ve never [00:15:00] had a baby. Who has needs you’ve probably never heard of before. So I had no idea it was a thing, which is another thing. My friend always says this, how am I supposed to know what to ask for if I don’t know what exists?

You know, a big part of that is just constantly asking everybody. ’cause eventually someone will be like, well, what about early intervention? You know? But then calling early intervention and getting an assessment and being eligible for services, but then being told on the island we don’t have a physical therapist.

We don’t have a teacher of the visually impaired. The woman who was the administrator of the program was technically an occupational therapist, but didn’t actually practice OT anymore. We don’t have a speech therapy, like they didn’t, they had a social worker.

So we got a social worker, which is.

Fine. But then you’re like aren’t I like legally supposed to be getting all these other services? Well, yes you are, but they don’t exist, and then [00:16:00] trying to kind of piece together, like I did get the administrator who was not a practicing OT to come in and do like consultations with us on OT.

I was able to get him to see like an adult physical therapist who they managed to allow to come in. Um, there was a TVI in the high school, in the school on the other side of the island who I contacted and got her to come over to at least meet with me so that I could talk to her about like, what is a TVI do, what should I be doing?

And then I was able to like email back and forth with her. So I kind of cobbled together. Sort of an early intervention program, but that’s also another reason why we moved.

Luisa Recchia: So you’re having to learn what’s even available. What do I even need, right?

Amber Bobnar: Well, yeah, yeah. Well, like when she says, well, technically I am an occupational therapist, but I don’t really do that anymore. And I said, well, he’s not working. [00:17:00] So why would he need an occupational therapist? She’s like, no, that’s not what OT is.

I’m like, I don’t know.

Luisa Recchia: Right. To your point, you don’t know what you don’t know, so you’ve gotta even learn that.

But what about the support? I know you talked, you know, if you had to go back you wouldn’t move. Uh, maybe. But what would you tell families that can support, you know, what was the piece that was missing that you wish you had? So if a family member is listening, on behalf of their sibling who has a child with a rare disease, what advice would you give them to help?

Because sometimes they might not know where to step in or not step in, or

Amber Bobnar: Our family was really supportive. I mean, even just coming over and helping me, like clean the house and things like that was very helpful. But just being like. You wanna have a community, you know, you wanna have a lot of people around so that you don’t feel isolated.

I know that a lot of, like [00:18:00] Ivan at this point, I would say is medically complex, medically fragile, but he wasn’t really when he was a baby, but even if he were like, you need to have people that you would be comfortable leaving him with so that you could even just step outside and go for a walk, you know?

So if I had. If he had an aunt or an uncle who was over enough that they knew what his seizures looked like, they knew what to do if he, you know, started to turn blue or whatever his things are. That I could feel comfortable saying, look, you, you know him because you are here all the time, and we hang out.

You know? So it’s not even so much like, I need you to do X, Y, and Z for me, but just being around, being so that I know you’re comfortable with him, he’s comfortable with you. That if I said, Hey. I need a break. Can you come and just sit with him? Like, I know you could do that, that you’re not gonna be like, well, like, I don’t know what to do with a blind [00:19:00] kid or whatever.

You know, like, you know him well enough that you’re like, oh yeah, of course. That’s fine. Make me lasagna too. If you can make me lasagna, that would be great.

Luisa Recchia: I love it. So then Wonder Baby. How did that journey become and what has it done for you? And

Amber Bobnar: Like I was saying, we started it because I saw all this, just great information that wasn’t out there. Also because at the time if you did like a Google search for, I was looking for things like, what do I do as a parent of a blind baby?

I’m raising a blind baby. There wasn’t that much. There weren’t even a lot of books. There were some, but not, not very many. And I thought if I could just, I want someone to be able to do a search and find ideas for toys that are accessible or how to adapt your toys so they’re accessible or I mean, like for example, [00:20:00] somebody came in the group and said.

My two and a half year old is walking but is unsteady and unsure because he’s blind. Should I get him a cane? I don’t want him to learn like bad cane habits that he’s gonna have to unlearn later. And someone says, oh, well what do you think about using a push toy as a pre-cane? Here’s some push toys we used with my toddler.

Right? And I was like, that’s an awesome idea. And like, wouldn’t it be great to just have an article that’s like. What’s the difference between a cane and a pre-cane? What can you use as a pre cane? Here’s a list of some toys, push toys that parents have used that make great pre canes and like kind of explain sort of the basics of orientation and mobility and like what that would look like.

Right. Um, like I just, I felt like that was something that, it was a space that was empty, that needed to be filled. Mm-hmm. Um. And then also the other part is once [00:21:00] that took off, ’cause then I, what I was doing was curating, right? I wasn’t like coming up with these ideas. I was curating from other people who are smarter than me, putting them together.

But then once that took off and was online, the best part is that if my job as a, you know, quote unquote blogger is to come up with ideas. I didn’t have to do that. ’cause I’m, I just get emails from people saying, oh, I did this thing with my kid and it worked great. You know, do you wanna share it? Or I wanna share the story of my daughter when we learned her diagnosis and how we dealt with it.

And so then it was just like, essentially just being a platform to, to give voices to other people who wanted to share stuff. And I love that. I, and also people just, they wanna boast about their kids. Like, that’s what social media is for. But also, if there’s someplace else you can do it that has a bigger audience, you know, this is my, my child using his cane properly for the first time.

I’m so proud of him. Do you wanna see this video? And then I share the video and everybody would [00:22:00] love. And it’s, it’s just nice. It’s just nice to have a place to do that.

Luisa Recchia: That’s wonderful. What has Ivan taught you personally through this journey?

Amber Bobnar: Patience,

which sometimes I think, oh, I have just like these, this amazing natural amount of patience. And then other times I’m like, why do I wanna pull my hair out right now?

But yeah. Just letting him be himself. One thing that I’ve been, that I tell myself is, you know that that idea of what trajectory is he on? What’s his future look like? Which, and he’s 20 now, so he’ll be turning 22 in a couple of years and he’ll be leaving school. So now we’re starting that transition process to adult services, which is terrifying.

But instead of thinking about [00:23:00] that trajectory to really just focus on who he is now, what makes him happy now? Trying to not force him into anything. Like the other day, he fell asleep during lunch and I was getting really frustrated ’cause like, we should be eating now, we shouldn’t be sleeping. And then I was like, you know what?

Let the kids sleep. If he wants to take a nap, let him take a nap. Like you don’t have to get frustrated for everything.

Luisa Recchia: What’s his favorite thing to do?

Amber Bobnar: Oh, the pool. Oh, he loves water. Yeah, and we got him started in aquatherapy when he was really young, which was another advocacy thing, trying to find a place. On the big island in Hawaii that would do aquatherapy with a baby was not easy. But we got him in and he loved it and it, it’s, he can, so he can’t walk.

He’s in a wheelchair, but he can walk in the pool. And he can walk almost independently. I’m still there, but you know, those like barbells, those floating barbells you can get mm-hmm. He holds up to the barbell and [00:24:00] then I pull it and he walks, which means nobody’s touching him. He’s not wearing any devices, he’s not wearing AFOs, he’s not in a wheelchair and he can walk and he loves it.

It is just the freedom of being able to move his body like that. And I also think like the sensory. You get the sensory input over through your whole body of the pressure of the water, so you can really feel where his body is, how he’s moving, and he just loves it. And we do it at least once a week.

We go to the pool, he walks and it’s great for his muscles and yeah, definitely water. His favorite is water.

Luisa Recchia: Nice. What, what is his non favorite?

Amber Bobnar: Anything cold. Like he hates ice cream.

Luisa Recchia: Oh,

Amber Bobnar: he can’t stand anything cold. If you’re gonna wash his hands, you might, you have to get this perfect temperature in the water.

I actually had that – and sticky. He had a [00:25:00] TVI last year and I said, you know, he hates cold things. Maybe part of, like, one of the things we could work on is handling cold things, you know, touching ice or whatever. And so they would have like, here’s your music and if you, if you touch the cold thing, then you get to play your music.

Had a new TVI start this year and she goes, that’s just cruel. And I was like, is it? And she goes, yeah, I don’t understand why you guys are working on it. If he doesn’t like cold things, he doesn’t like cold things. I don’t understand why that’s a problem. Good point. Yeah. Okay.

Luisa Recchia: I love it. Yeah, so

Amber Bobnar: That’s fine. He doesn’t like cold things. When we go like. To a public bathroom and I want him to stand. He needs to hold onto a bar and they have bars, won’t touch them because they’re cold, right?

Luisa Recchia: Mm-hmm.

Amber Bobnar: Or if we go to the hospital, they have a scale that he can stand on and hold the bar to get weighed, won’t touch it if it’s cold.

So I was like telling this TVI. I’m like, well, there is [00:26:00] actually a reasoning, like why he should be able to touch cold things. And she goes, adapt for him. You don’t, he doesn’t need to manage the cold. You need to adapt it so it’s not cold for him. So what she got me were these covers that are portable that I can take with me that I, that fit over a bar.

So now he can touch the bar ’cause it’s not cold. You know, like thinking about that rather than being like, he needs to be able to handle cold things so that he can, whatever. She’s like, well, or he doesn’t like cold things. So we adapt that so that he can handle it.

Luisa Recchia: I love it. Yeah. We’re always trying to conform people to our thinking in ways, right? Yeah. And sometimes, uh, so wow. What a perspective.

Amber Bobnar: Yeah. When we go to the hospital, they say, um, we need to take his weight. Is he able to stand? And I said, I’ll say yes. If you have one of those weights that has the bar on it, he can stand if he’s holding onto something, and they’ll say, okay.

And they’ll take us to the scale and I’ll start taking these. Things out. And I’ll say, can you put these on the bar, [00:27:00] please? And they’ll go, what is this? And I’ll say, it’s because the bar’s cold and he doesn’t like to touch it. And they’ll go, this is brilliant. We need this for all of our patients.

Luisa Recchia: Oh. Yeah. I, I, I always like to say, what’s the value of just one idea, you know?

Yeah. Yeah.

Just amazing. Oh, so for listeners who may be curious now of Wonder Baby, what would you share with them or want to share with them? Is it still a place they can go to today?

Amber Bobnar: Yeah, yeah. Wonder baby.org is the website still active on Facebook. So you search Wonder Baby on Facebook, you can find it. I do not update the site as much as I used to because it’s tough. I’m one person. Sure. But, um, I still have people that will contribute things to me and then I’ll, I’ll edit and post it.[00:28:00]

And I used to do an email newsletter, which I really enjoyed doing, but it’s actually really expensive. The more subscribers you have, the more they charge you. And so it was like. Because of the success of the newsletter, having so many subscribers, it was getting to the point where like, I just can’t afford this.

Because it’s also, it’s still, it’s just me and running it outta my kitchen. I love it when people contact me and they’re like, hello, wonder baby team? And I’m like, me and the cat, who’s the, um, and people will sometimes think that like. It’s a whole company and you know, they’ll, they’ll reach out to me and they’ll ask me to like, you know, send them money, like they’re looking for a grant for something and I’ll feel bad. I’m like, I do not have money to send you. I’m sorry, but I can give you a list of places you could contact.

Luisa Recchia: Well, and there’s value in that too, right? Yeah. Because a lot of people don’t have, [00:29:00] don’t have that, uh uh, don’t know what they don’t know.

Amber Bobnar: Yeah.

Luisa Recchia: Yeah. What gives you hope today?

Amber Bobnar: You know, when, so we’re getting ready for this transition to adulthood and when Ivan was transitioning to preschool, right? We were in the Perkins Early Learning Center.

We, before that, we were in the infant toddler program and. I was really, really nervous about him getting the right placement, you know, the quote unquote correct placement. And I remember the social worker that was in our infant toddler group saying the, the, the system is made for parents like you, for kids like Ivan, like the, you’re not an outlying case.

Ivan is the guy who needs these services. You’re not asking for more than. He deserves. You’re not going to be like a marginal case. And there [00:30:00] are people who are marginal cases, you know, and that, and I’m sure it’s harder to advocate, but she was saying like for where you are, you know, you have got these like very strong diagnoses and this is having a special education system is designed for him Exactly.

For people like him. So don’t worry. You still have to advocate, but don’t worry like you’re going to end up someplace, right? And so I’ve been trying to tell myself that now too. Like I know that it’s harder when you get to adult services. There’s more clients than there are necessarily placements and you’re trying to find the right place.

But so far everybody that we’ve worked with has been so kind and so open. And again, it’s like, no this is for you. Like this is what is your, the system is set up for you and your son to be doing this. This, you’re not asking us for favors. Like this is the way it’s supposed to work. [00:31:00] And on top of that, I keep telling myself, worst case scenario is what?

I get to hang out with Ivan more, you know, like I, I can make that work. But I think what gives me hope is just knowing that there are so many people who are at like state level services that like their job is to help people like us. They’re not trying to push us under the rug. They’re not trying to ignore us because like.

We, we are the client they’re supposed to be helping, if that makes sense.

Luisa Recchia: Yeah.

Amber Bobnar: And so far everybody has just been, like I said, so kind and so helpful. So even though it, it’s a new frontier and it’s scary to think about what might or might not happen. I feel like we’re heading in the right direction and that everybody is doing what they’re supposed to be doing.

And then I, I also, I have my faith. [00:32:00] And so I fall at, I fall on my faith a lot.

Luisa Recchia: Yeah.

Amber Bobnar: I, I fall back on that. I pray a lot. And we have a good support system at our church as well, so that’s all very good.

Luisa Recchia: Wonderful. Is there anything I haven’t asked or you haven’t mentioned yet that you would like to share with our listening audience?

Amber Bobnar: Well, you’re asking about what Ivan likes the most, and I think it’s really important, especially with kids like him. He’s, you know, he’s nonverbal. He’s in a wheelchair to really try and find what it is, not necessarily that they’re passionate about, but the things that really bring that quality of life in, you know, into the equation.

Things like, he loves his dog. He loves to visit his grandpa. He loves to go to the pool, he loves music. And then trying to incorporate that as much as possible. And then, you know, thinking [00:33:00] about if they’re in school or if we’re like transitioning to a new program, how can we work those sort of things in, right?

Like maybe they have a therapy dog who can come by and visit or they have music time or whatever it is, but like. Really trying to figure out what are the small things that make him happy, and then trying to incorporate that into our lives as much as possible.

Luisa Recchia: Yeah. Oh my gosh, this has been wonderful.

Thank you so much for joining us today and for sharing your story, your heart, and the work behind Wonder Baby. The support and encouragement you’ve created for families is truly meaningful, and I know our listeners will walk away feeling seen and informed, and encouraged. And thank you to everyone listening to Through Our Eyes.

We’re grateful you’re here with us today. Be sure to subscribe. Share this episode with another family and continue following along as we highlight stories, resources, and hope [00:34:00] from this community. Until next time, take care.