5.24.26 PUBLIC LIVE

Added: 2026-05-25

[00:00:03]It looks blurry.

[00:00:04]>> It's not blurry.

[00:00:05]>> I don't see it. I don't see that.

[00:00:07]>> It's not blurry.

[00:00:08]>> Well, then it must be just my eyeballs are blurry.

[00:00:10]>> It probably is.

[00:00:14]>> Hey guys.

[00:00:14]>> Hey.

[00:00:16]>> How are you all?

[00:00:19]>> Um, it let me know if if the picture looks blurry to you. But for some reason it looks blurry to me but they are saying that it is not. Uh welcome everyone. Thanks for stopping in. Tofu just used my arm as a little push.

[00:00:37]>> Tofu just decided to join us.

[00:00:40]>> Aggressively affectionate.

[00:00:41]>> Uh if you haven't met Tofu before, this is Tofu.

[00:00:46]If you're getting ads, thank you. Um, some of you will see ads throughout the course of the live stream. Just please let them play 30 seconds before you press the skip button. That's all we ask. Um, you don't have to usually watch like the whole entire thing, but 30 seconds is safe so we get credit for the ad. And uh, we're going to do our best to keep this kind of brief today. We're hoping to not be on for more than 30 minutes. We don't want to take up a bunch of your time. just want to go over like some basic updates of what's been happening for the last um couple months, few months. And uh maybe Tofu can go do something else so we can focus on the live now.

[00:01:28]>> Um >> so we're going to go over I think most of you I think are probably caught up to date to the point that Anna had surgery in December. Uh, I know a lot of people were were following and and staying up with things in November, December when we were down in Florida last time. So, we're kind of going to take it from there and go over what has transpired with her medical stuff since then, maybe a couple of uh, family updates and what we have coming up now already.

[00:02:03]And that's it. And otherwise, hey everyone. Hi. Good to see you all. Um, I know that a lot of you talk about you miss seeing us live. We don't go live on um you the Book of Faces anymore Facebook uh for those who aren't sure.

[00:02:20]And um there's good reason. It's it's become not a very good creative space for content creators. It's it's not working out for a lot of people. I'm sure if you follow other content creators, they have also talked about it or decided to leave that platform and go elsewhere. So, if you want to find us, you're going to find most of the stuff over here um on YouTube. And if you click the subscribe button, it is free.

[00:02:52]Subscribe on YouTube means follow. So, don't be afraid to click the subscribe button to make sure that you're following our channel here. I think there's a bell icon either on the live stream or on the main page you can click for notifications. It'll tell you when we post a video um so that you can kind of keep up with things if you forget about us. And uh we also have actual subscriptions which over here on YouTube they call memberships. Um if you go to our YouTube channel, I'll show you real quick what that looks like.

[00:03:26]you'll see where it'll say uh join and those are memberships and if you are interested in that you can see us live every week. I don't even know where the page is. I have >> way too many pages.

[00:03:41]>> It's the very first one. There we go.

[00:03:43]Okay. So, this is what it looks like on our YouTube channel when you come and you'll see there's all these little um menu buttons across the top. And if you click on posts, I think that's where you can see the live streams. I thought there was one that said memberships, but maybe you have to click this join button first in order to see the member tab, but posts will get you to and and if you're and if you're not joining any kind of membership, you just want to click the videos tab and that'll take you to the videos that have been posted. And uh yeah, I think that's the gist of it. So anyway, most people should be done with their ads now. Hello everyone. Who do we have on? Joanne, hello.

[00:04:27]Jennifer's here.

[00:04:30]Erica, hello.

[00:04:32]Oh, I see some members.

[00:04:34]>> Yeah, >> you guys have a special icon next to your name. Um, so in December, Anna had surgery and she had these eight plates put in her legs just below the kneecaps basically on the inside of the uh >> t it's between the the kneecap and the tibia in the growth plate. In fact, I have a picture here that I can show you guys if you haven't seen it before. It was unexpected.

[00:05:09]>> It was unexpected. We did not go down to Florida expecting surgery. We were just planning to get her regular serial casting, uh, treatments done, get her braces, um, you know, new braces she has to get every year because of growth and everything. So, we were not planning on a surgery, but a surgery happened.

[00:05:31]And so, this is what her eight plates look like. You can see them right here.

[00:05:38]They're called eight plates because if you look at them straight on, if you look at the actual hardware, it looks like the number eight. It's got um the two holes in it for the screws. And these long pins in her legs are the screws that hold the pl in place. And you can see how it's below the knee.

[00:05:57]This this kind of line in the center here is where the kneecap would typically be. And this this area just below that line where it's a little bit um darker, but you can see it's kind of like a rectangular area. That is the growth plate. And then below that you have the tibia. And so they put one of the screws into the growth plate and they put the other screw directly into the tibia. And what that does is it prevents growth on the inside of the tibia. And so when she goes through a growth spurt, her bone will grow on the outside but not on the inside. And that is what will help straighten out the bone down here. You can see the curvatures as she grows. It it works with her growth. And so as she grows, it'll straighten on the outer edge of the tibia and straighten out her bone. At least that's the hope, right? That's the point of it. Um, so Dr. Feldman was very urgent in the fact that she needed to have that done when she did because she has very few growth spurts left because girls only have those big growth spurts until they hit puberty and then that stops. So, um, we went ahead and got it done. Uh it was it made our trip it extended our stay down there by a lot which was financially very difficult. We also in addition to our um insurance going up significantly this year the monthly premium we had a lot of outofpocket expenses for the surgery. I know people are always like don't you have an out-of pocket max and uh we do. It's $18,000.

[00:07:50]So unless she's having a surgery, we are not likely to hit that out-ofpocket max.

[00:07:56]Um and and once and and we had hit the deductible before we even went to Florida. We still had about $12,000 in out-ofpocket bills from the surgery and other medical treatments surrounding the surgery. So that was difficult um to manage. So we get we got home in January. We finally made it back. Um, unfortunately her serial casting rounds were basically cut in half. She didn't have the full length of treatment that she would normally get. So, they didn't get a full correction on her, which has, we've found caused issues with her braces. Um, the adjustments with the plates and the adjustments from not being fully corrected. She's kind of like I don't know how to describe it, but she's sitting in her braces a little bit off and it's causing some pain and discomfort. Um, she's also starting to already grow. She had at least one grow spurt.

[00:09:00]>> Um, because we can tell because her knees are coming out of alignment with that knee joint in the brace. You know, she wears those braces at night. She has to stretch almost every night for an hour. And so it's easy to tell when things start to shift because there's a difference in how her braces fit. And then also, I think in February or was it February or March, we noticed that her day braces were starting to break.

[00:09:28]>> The strapping she has them on so I can't show you, but there's like this um fabric strapping that holds a lot of the hardware in place. It has like the uh they're not grommets. What are they called? Like the metal >> rivets. Well, yeah, it holds the rivets, but I'm talking about the things that your straps go through. They're like metal buckles kind of.

[00:09:51]>> Um, I noticed that it was coming. It was like moving sideways. I'm like, what's going on? So, I look at it more closely and the fabric is starting to fray. And I guess because of the changes in the angle of her ankles, it's pushing the fabric up against her shoes um and rubbing and causing the fabric to break. So good oldfashioned duct tape fix has been holding that in place it >> um because we had to decide. So, at that point when I found out that her braces were um breaking, like that's an urgent thing, right? We can't have broken braces. She has to wear them every day. And so, I had to decide like what are we going to do? Are we going to mail them? Cuz that's one option to send them $100 overnight mail down there and try to give him the best information we can for fixing them like through email. um and pictures and then they fix them and mail them back and hope it's good and if not it has to go back and forth again. In the meantime, she goes without the braces for like four or five days and that's a problem uh because regression happens very quickly with AMCers.

[00:11:13]But we also had noticed changes in her legs and we wanted to get the um progress of the eight plates checked out because the concern is if you leave the eight plates in too long, they can overcorrect her legs. And so right now they're fixing this bowing, right? She's got like these bowed knees, >> knock knees, >> knock knees that are bowing inward. and the eight plates are adjusting them so they'd be more straight. But if they stay in too long, they can overcorrect and cause her to actually be bow-legged where her knees go outward. And that's not good. We can't do that.

[00:11:54]>> Unless Unless I'm doing plers, >> Anna says unless she's doing plers. So that's true.

[00:12:02]>> But it wouldn't really be helpful for anything else, >> right?

[00:12:06]So, um, so we wanted to get those checked out. And so, normally she would get all her x-rays down in Florida. They have a special machine down there called an EOS machine. It's set up to do the X-rays exactly how they need them. And it's also far less radiation. Uh, these kiddos get a lot of X-rays. I'm sure you can imagine. And so, that's one of Dr. Feldman's big things is having less radiation since they have to get X-rays frequently. Um, so he had said that we could find out if there was an EOS machine up here at University of Michigan Children's Hospital and possibly get the X-rays up here, but then we have the braces issue that we need to deal with. But I wanted to figure out because if her plates were like getting towards a full correction, then she'd have to go under surgery again to get them out. And there was also the issue of her treatment, which never got finished. Like it was never done all the way um at the end of last year. So we had all these things kind of swimming around. At the same time, uh Austin's going through graduation, right? my son finished his community college graduation and so we were had all of that happening. I don't know if you guys saw but I'll share a picture real quick of Austin and Anna. So he finished his associates degree and he's going on in the fall to University of Michigan Ann Arbor which is awesome and I'm super proud of course but as you can imagine he's going to be very tied up. So, we're like, "Okay, she needs more serial casting," which I guess we were figuring we would do towards the end of the year when we would have to go back and get her braces redone, but now we've got braces that need to be fixed already. Um, we have serial casting that still needs to be done. We have plates that we don't know if they're ready to come out or not. We have X-rays that need to be done. We don't know where we can get them done.

[00:14:16]like it's been a whirlwind already and it's only May.

[00:14:22]>> May >> um >> Mayday, Mayday.

[00:14:25]>> We just got, thanks to a lot of you and some other people, we just got the bills that $12,000 of medical bills paid from everything at the end of the year. Um, it's so incredibly heavy to the point that you all have convinced me just to keep an open GoFundMe account. Like, it's there. It's going to be there all year.

[00:14:53]This is going to continue. Like, I mean, hopefully after this trip coming up, it won't be as intense because everything will be here and we won't have the travel expenses. That's the hope. But um already, you know, we're having to go back down now. And so there's going to be those $300 session casting fees.

[00:15:14]There's going to be um whatever out of pocket we have from Thankfully, it looks like no surgical expenses right now, but it's just a lot. So anyway, um we had some issues getting her x-rays. We found out that University of Michigan had the EOS machine.

[00:15:34]>> And we went up there, drove all the way there to get her X-rays just to find out that it's not the same EOS machine. It's calibrated differently. And they were unable to do the X-rays the way that Dr. Feldman needed them. And Dr. Felman was not in town to like facilitate an immediate fix. So, we had to turn around and come back home. Um, we didn't think we were going to get them done at all.

[00:16:01]We figured we'd have to go to Florida like, "Well, okay, this is going to have to be done when we're down there."

[00:16:06]And, uh, they did actually get it worked out and get an order sent over the following week. So, we went back and got them. I'll show you what the X-rays look like.

[00:16:23]Oh, I did that comparison one. Did I send it? I do not think so.

[00:16:29]>> Okay. So, well, you saw the leg x-rays.

[00:16:31]I'll put them back up again real quick while I look for the comparison.

[00:16:37]But, um, so these are this is what her legs >> look like. Now, I'm wondering why it won't Oh, there we go. Okay.

[00:16:52]Oh gosh.

[00:16:53]>> Use the marker.

[00:16:54]>> Okay. So you can see the the the tibia bowed, right? Like that's what we're trying to fix. And you can see that they're still bowed, right?

[00:17:05]And I put together I don't know where it is. I put together a side byside comparison so you guys could see the before and after.

[00:17:13]>> I think you haven't uploaded.

[00:17:15]>> I didn't upload it. Okay. Well, they also took real quick while I'm sending that then. They also took a spine X-ray.

[00:17:30]Show you what that one looks like as well.

[00:17:36]This one, this one freaked us out a little bit. So, they don't normally do spine X-rays or if they do, we don't normally see them because it's not normally something that we talk about because normally she's unaffected in her spine. Dr. Felman's always said that her spine is looks great. Um, her core is largely unaffected. It's like the only area on her body that's largely unaffected by arthogosis.

[00:18:06]So, um, we've never really had spine concerns.

[00:18:11]I wasn't sure why they like I was like, if the if they did the X-ray, if they had U ofM do the X-ray, does that mean that there's some concern? And it and is it a new concern because it's somehow tied to the eight plates? Is it something that they know could happen from eight plate adjustments? And if so, why why didn't we talk about that? How come we didn't know that that could potentially be a concern? Um I still don't know exactly why. We have another appointment with Dr. Felman at at the end of um June. So, we'll find out more then. But they did detect some degrees of curvature. You can see at the top up by her heart, it's slightly curved. And you can see at the bottom at the base of her spine, it's slightly curved. And so, one of those is 15° and one of those is 17°. Now, I don't know if that, you know, maybe some of you have scoliosis or you have had children with scoliosis.

[00:19:08]You might know better than I do what that means that if that's a degrees to be concerned about or not. But I did talk to another AMC mom um whose child was scoliosis to this degree, same degree actually, very similar was detected. and she said that the team basically like it's inherent like it's part of AMC like at some point when you have two legs that are of different lengths um you're going to have some changes and it also could have been just the way she was standing for the X-ray. So, I think they want to check it again um to kind of determine like they'll probably do another X-ray when we're down there. I'm willing to bet maybe after the serial casting is done. Yeah, they will because that we're going to see Dr. Felman again at the end of June after she finishes the serial casting. So, I I know he's going to do another imaging and then he'll compare.

[00:20:13]>> And she was when she was in that she was it was really kind of a awkward position for her. So, >> well, I did have to like twist. Yeah, she had her arms up and stuff. Um, which they don't have to do in Florida, but because of the difference between the machines, she had to put her arms up on a bar pretty high. Um, I said I I shared a picture of that on the page. I said, "Wow, you know how high she had her arms up is probably the highest I've ever seen her arms up in the air."

[00:20:39]>> So, that might have affected it.

[00:20:41]>> It might have affected it. So, we're not we're not panicking is what I'm trying to say. um on the scoliosis thing, it could be a number of of factors that cause that. And so that's not like a big concern. At first when we saw it, we were like, "Oh my gosh, what is this? Is this something else that we have to worry about?" I don't think it is. I think that right now it's kind of a watch and see thing. Um but to show you I I have that comparison if it uploaded.

[00:21:11]I uploaded it. Where did it go?

[00:21:15]There it is. Okay. I'll show you the comparison between the legs so you can see where that process is at.

[00:21:30]Here we go.

[00:21:32]So, this is the Is this the right one?

[00:21:38]>> It looks like there's no click.

[00:21:40]>> I don't think No, there is.

[00:21:41]>> Is there?

[00:21:42]>> No. I thought I did a comparison between the two with eight plates.

[00:21:47]Sorry, guys. It's I I just did this with >> I think you tried to do that, but then some >> Oh, no. That is the right one.

[00:21:53]>> Yeah, I remember seeing that little line.

[00:21:56]>> I don't know what I'm doing. Ignore me.

[00:22:01]Okay. So, yeah. So, this is But this is this is the image from before the eight plates were put in. So, this this was taken right before they put the eight plates in. And then the one on the right side is the now is the the image. You can see the the difference in the X-ray machines. It shows up different colors and almost looks like different bone density, but I think it's just the difference in the the X-ray machine on the left is the super fancy expensive one that they have down in Florida. And you can see it shows a lot more. Um the one on the right is a little darker and harder to see those details because it's not as new and fancy. They they have the economy version.

[00:22:43]>> Um so but you can see uh there's really not much has changed, right? Like it it looks when you look at her legs from the outside, it looks like there's been some change.

[00:22:57]And I guess maybe, you know, like they're not touching. So he said maybe a little bit of change. He said there's a little bit of change on the right side, which for you guys looking at the picture is actually the the leg on the left. Um, so that leg on the left side is Anna's right leg. And he said little bit of change there, but not enough for the plate to come out. And on the right side for you is her left leg, which as you know has always been much more affected. Um, and he said, "I really don't see much change there at all." In fact, he said that there's a chance. So, first of all, this is the first time we realized when we when we really saw this X-ray that there's a good chance or a likelihood that she'll have to have these plates taken out at two different times.

[00:23:51]>> I I was like, are you kidding me?

[00:23:54]because we just spent exorbitant amounts of money to have her do the surgery to get the plates in.

[00:24:04]We thought it was going to be one more to get them out, not potentially two more. But he also mentioned that if that left leg is not responsive to the plates, something about potentially she might need a rod in that leg, which I'm not jazzed about. Just >> more rods.

[00:24:26]>> Yeah, more rods.

[00:24:29]>> I mean, just off the top of my head, I'm not jazzed about it. I don't have a ton of information. We didn't go into detail, but just the sound of it is like, oh, come on. I mean, maybe that's, you know, maybe one plate comes out when the corrections are done, the other plate comes out, too, and the rod goes in. I don't know. I can't predict the future. I wish I could, but um the bottom line is the plates haven't done enough for either of them to come out. So, no surgery right now. Will it need to be done later this year?

[00:25:08]We can't say for sure, but we don't think so. He's thinking that probably she will need all of this year and into next year to grow, which is good because after this trip that's coming up, we aren't going to be able to go back down there until about this time next year.

[00:25:24]So, we're basically going to take this trip, cross our fingers, and hope that that's how things hash out. Um he said in the beginning that it was probably going to be a year >> or so year to a year and a half and that's kind of what it would end up being. Huh.

[00:25:42]>> So that might work out. But as I mentioned earlier, she does need to finish her serial casting. We do need to get her corrections finished and double checked with her PTS. She can totally do her serial casting with the plates in. So, since we have to go down there to get her braces fixed anyway, and since she had an appointment to follow up with Dr. Felman at the end of June anyway, we're going to go now.

[00:26:10]We're leaving in less than a week, which we can't believe.

[00:26:14]>> Y >> and um get her casting. She's going to have five rounds of casting and then get her braces fixed and get her night braces adjusted so that they fit her better, which hopefully that will carry her into next year. They might need to be tweaked again at the end of the year, but at that point we could just send the night braces and that will be okay um once we have the full adjustments with the serial casting and uh see Dr. Feldman at the end of June. And then we were already planning to go take Anna to the Arthogosis conference this year, which is an exciting thing because we haven't been since 2019. Um, we used to go every single year. It's it's a really big deal, I think, for Anna right now because she's, you know, at that age where it's so critical for her to form bonds and friendships with other girls her age. And I think that being with the other pre-teens at conference is going to be a really big deal for her. And I'm really excited. I'm also excited for Aaron because he's never been to um an arthogosis conference before. He's never been around that many families of AMCers before. Like we see one or two families when we're down in Florida um at Paley or when we're staying at Quantum House, but uh this will be a big deal for them.

[00:27:39]So our plan is it just all coincided that we would be coming back north with the conference on the tail end of this trip and then after that we cannot leave the house because we don't have a house sitter or a catsitter because Austin will be tied up uh for the rest of the year with intense school >> learning how to navigate that whole situation.

[00:28:04]>> Yeah. So um that's the plan. We're going to be leaving in less than a week. We're going to It's going to be a fast trip. We do not have time to even like We've been trying to take more time to get down and back because of my hips and back, Anna's legs, and the dog. It's just uncomfortable to be in the car for more than like 6 7 8 hours. But we only have the three days to get down there. So, only two overnights. It's going to be a really fast drive down. We're going to have to push it. We're gonna have to be in the car for longer than comfortable.

[00:28:37]get it done. Uh, Quantum House is not available. We were afraid of that. I've been seeing parents, other parents talking about they plan to go down over the summer when the kids were out of school and Quantum House had no space for them. So, I pretty much knew that was going to be the case. Um, we did find a house to rent. It is way less than an Airbnb. So, we're grateful for that um through a connection, but it's still going to cost some money. Probably about the same as what we spend at Quantum House. So, that worked out. It's a little further away. It's it's it's a bit of a hike for us to get back and forth, but that's okay. It's could be, you know, worse. If we were still living in Orlando, it would be even more of a hike. If we had to commute from Michigan, it would be even more of a hike. So, you know, on the positive side, we were very lucky to secure something affordable that is within a a fairly reasonable drive for her appointments. Um, and yeah, that's it. We're going to go do casting and get braces and quick drive again back north because we're only going to have a couple days to get back for the conference and then we're going to relax for a bit. I'm kind of happy she's not having surgery because one of the things that made me really sad in December was that we had plans to stop on the way back and let her swim. Like that's a big thing that we do when she has her cast.

[00:30:07]Well, there's two big things, right?

[00:30:08]There's two ways that we celebrate this process that she has to go through every year of five, six weeks of casting. And you know, it's all kind of like it's a lot. But before the process starts, she gets what >> what do you get before we start casting free feet, which is a really big deal for her. So, I'm sure a lot of you take for granted the fact that you can sleep at night with your feet bare and rub your feet against the sheets and feel the softness and the coolness. And Anna doesn't get to do that. She has to wear braces every single night. Um, so every time she's about to start a round of casting, she gets free feet.

[00:30:56]So, uh, that's one thing we do to celebrate the process every year. And then the second thing we always do is let her swim afterward. Like swimming afterward is a huge reward for going through all these rounds of casting.

[00:31:10]It's something she really loves and enjoys. And we couldn't do that after casting in December because she had surgery and you can't swim within like what was it four >> four weeks >> four weeks at least like bare minimum four weeks and that's if everything's closed up right um because of the risk of infection. So she didn't get to swim.

[00:31:30]So, um the good thing is on the way back home when we stop at conference and we're there for um like a week, she'll be able to swim every day if she wants to, which she hasn't been able to swim since since we we got back up here uh since we moved. We haven't had a pool.

[00:31:48]She hasn't had access to a pool.

[00:31:50]>> So, that'll be super exciting. Um yeah, and then and then we'll get back here uh right after my birthday, which at the beginning of July. And then I'm excited because I think we get to stay home the rest of the year and I can't wait for that. I can't wait to have Christmas at home with the family and not have to travel back and forth and all that. I'm looking forward to that.

[00:32:17]>> Are we going to put up the tree this year?

[00:32:18]>> We're going to put up the tree this year probably early.

[00:32:22]>> Um I'm super excited.

[00:32:24]>> So, uh that's everything that that's going on, I think. Did I forget anything? So, big thing I want to mention, um, as always, we have to do some fundraising to make these trips happen. We have all of our normal monthly expenses in addition to this trip. And actually, because of everything that's happened with Facebook, we have had a really rough year. I don't even right now know how we're pulling together the $3,000 for her health insurance at the beginning of June, which is has to be paid here in a week.

[00:33:00]I don't have it. And we have to have that for to go on this trip and pay for everything. So, that's a big stress right now. So, Aaron has been double timing it. He has been drawing and we have been selling his art. Um, we put up three of them a couple weeks ago. They sold within the first 24 hours. So, if you were one of those people, thank you so much. We put up three more the other night. I'll show you guys real quick what what he has right now available on our merch site. Um, and there's another one going up soon. But, so, this is a scene that he illustrated. And these are all one of a kind. Like, there's no copies or anything. this this is a oneandone illustration. It's signed. It's dated.

[00:33:50]Um like this is a legit piece of art.

[00:33:53]And um he's going to continue trying to do these to help us, you know, earn money to cover everything. So this is a dinosaur scene that he did.

[00:34:03]Another one that's super cute if you have a grandson um for like a nursery. Another dinosaur that he did that's up available right now is this guy.

[00:34:16]I know he's really cute.

[00:34:20]>> That's what it sounds like.

[00:34:21]>> And then my favorite that's available right now is um we're calling it a pig day out.

[00:34:30]It's a family of pigs. It's like a grandma and her grandchildren.

[00:34:35]Look at that. Like that could legit be in a story book, right? Like that is some dang good illustration work there.

[00:34:44]And you can own this and have it on your wall or on the wall of your grandchild's nursery or whatever. Um it is available.

[00:34:52]There's only one. So if you like it, go grab it. Um and he's going to continue.

[00:34:57]There's going to be uh one of Anna and Jamele going up soon. And then he'll continue making those while we're down in Florida to continue help paying because we got to pay all the bills back home plus the trip down, the trip back, the lodging while we're there, the lodging at conference. I know you guys love a collectible magnet. We've been doing those every medical trip. So, we've got a new one coming out for your collection, but is going to be for conference to help raise the lodging for conference. Um, and it is going to be conference themed. So, that'll be a fun one to add. This will give you uh kind of a hint of what that's going to look like. He's still working on it.

[00:35:40]Anna will be in color in the end, so it'll be one of those partial color magnets just like we've been doing. Um, so that should be up in the next couple of days. And what else? Um, oh, we have the Anna's Wildflower merch if you guys haven't checked that out.

[00:36:00]We were only going to keep that up until the end of the month, but because of everything going on, because we're packing and leaving, we're not going to do like an AMC awareness shirt line, we're just going to keep the wild flowers up because everybody has been raving about them. Anna did such a good job on that wildflower design. It looks gorgeous on the merch. Like, this is this is in person what the pillow looks like. Look at that print.

[00:36:26]It came out so nice. The colors are adorable. That is Anna's handwriting.

[00:36:33]So, this is her work.

[00:36:36]>> Thank you.

[00:36:37]>> And, uh, she did an amazing job. And that merch is, we've got all different things available on the merch page. And so all of the proceeds from all of this, whether it's purchasing one of Aaron's pieces of art, if it's purchasing merch, if it's joining um our subscription on YouTube membership, um if it's just even just donating to the GoFundMe, all of that money is is going to the health insurance for the month of June. um the gas and lodging on the way down, the lodging and gas while we're there, gas and lodging on the way back. Gas, lodging, food. That's those are the big expenses. And then anything left over if there happens to be will go towards the out-ofpocket bills that we will get as soon as we get home.

[00:37:28]It's just going to be an ongoing thing.

[00:37:30]And you know, like a lot of people, we're struggling right now and everything is stupid expensive.

[00:37:37]So, that's what we have going on. I think that's everything. Can you guys think of anything I didn't cover?

[00:37:42]>> Oh, yeah.

[00:37:46]>> I ju I just wanted to thank um Hillary and Sharon and Michael and Tina K and Susie for the super stickers.

[00:37:57]>> Thank you. Appreciate that.

[00:37:58]>> And thank you guys for sharing information in the comments for others who might be interested. And um if if you're looking for the merch site, if you're not sure how to get there, honestly, the easiest way is just open up a Google page, like you're searching for something, and just type in team AMC Anna merch. It'll come right up for you.

[00:38:21]And um all of the you can get to Aaron's drawings that way. Uh there's a menu.

[00:38:27]It's like one of the three lines up on the corner if you're on a mobile phone.

[00:38:31]Open up the menu. You can find things that way or you can just scroll down the main page. You'll see one of Aaron's drawings. You'll see all of the Wildflower merch. And if you scroll below the Wildflower merch, you will see the link to our GoFundMe account. Um, and there's a couple of updates on there. Like the first um like $12,000 that came in on the GoFundMe went towards the bills from her previous surgery. And I have updates in there and I will continue to post updates as I have information about where that money is going cuz I I know people like the full transparency and I like to be fully transparent. Um we're not doing super fun things except for a conference will be fun but I also think that that's necessary.

[00:39:20]Uh Mariela says I may need that pillow.

[00:39:23]Does anybody have any questions before we say good night about anything? Any updates? Um, yes, Anna drew those flowers that she drew that all by hand.

[00:39:34]I added the color when I did the post-processing, but she drew those flowers.

[00:39:40]They're so cute. Like she said, where did you learn? You said you didn't learn how to draw them from anywhere. You just made it up. Just doodling.

[00:39:50]>> Doodling with only circles.

[00:39:52]How do you request a drawing? Um, if you go to the Sketchy Friendler tab on our merch site, you will see um, it's like purchasing an item. You can purchase a custom drawing and it will walk you through. There'll be another site you have to go to to put in the information about what you want and upload pictures.

[00:40:18]So, it's a little bit of a process to purchase a custom drawing. And I would just ask because we're going to be traveling and it's really difficult for Aaron to do that on the road that um as much as I hate to say, you know, don't do that right now because I know people will get tied up with other things and it'll never happen, it's just not a good time for the custom drawings right now.

[00:40:42]Um, but we he will continue to do drawings while we're on the road and and post those.

[00:40:51]It looks like a full pillow. Yes, it's really nice. It comes It comes with um the the cover comes off the pillow. So, it the cover comes folded in the package. What are you guys doing?

[00:41:05]>> We're just They're like fainting goats. And the pillow is is like it's an enclosed pillow inside. So, and that comes like kind of shrink wrapped or whatever. So, you get the pillow and the cover both for the price and then you pull it out and stuff it. But yeah, it's it's you can zip it off, you can wash it.

[00:41:31]It's really good quality. It's like a almost like a um I don't know how to describe it to you. It's got a little bit of a a rough texture to it. It's a very durable linen. Very durable. Is there a tag? Maybe it says what material it is. I don't know where it's at.

[00:41:52]>> There would usually be an outside tag, >> but cover.

[00:41:55]>> Yeah, normally there'd be an outside tag, but I like the fact that there's not actually. Yeah. You know, that's one thing that consistently everyone has said about all of our merch is that it's really good quality. There's a purse, it's a little bit more expensive, like I can't even afford to get Anna one, but um there's a purse available that has both a wristlet um strap and a crossbody strap. So, you can wear it as a cross body purse. And it's a good size. like you can't really tell from the pictures, but it is so nice. It is such a high quality item. People have just been the people that have picked it up have been raving about it. The water bottles, uh, the notebooks are nice. The t-shirts are good quality. So, yeah, all of that stuff is really worth the money if you're able and and and if you want it. Like, some people aren't interested in merch, and I get it. The pillow's super soft and we do um our merch company ships all over the world and they have printers all over the world as well. So some people assume that the shipping is going to be expensive, but that's not necessarily true. We've had people in Australia and Canada say that it wasn't that bad. So, my advice to you is to put what you are interested in in the cart and and kind of go through the process like as if you're going to place an order and see how much the shipping comes up because it's not always too much. And it goes by weight of what you're ordering, too. So, sometimes if it does come back high, you can drop off a heavier item maybe and knock it down.

[00:43:36]So, uh, when did Aaron get home?

[00:43:41]Um, >> end of April.

[00:43:43]>> April.

[00:43:44]>> Yeah. Aaron's been back.

[00:43:47]Yes. The very end of April. That's right.

[00:43:54]Sharon says, "It's gorgeous. All of the merch is great quality.

[00:43:58]Everyone wants to see Jelly." Uh, I think it's kind of hard to get her in here with everybody here, but you guys will see her soon because we're going to be documenting the trip as always. Of course, the videos um if there's any longer videos, they'll be here on YouTube. So, make sure you are subscribed to our YouTube page, which just means follow. Um it doesn't cost anything to subscribe on YouTube. So, make sure you click that button because that allows you to follow the channel and you should get notifications or be able to set up notifications, >> the bell icon.

[00:44:33]>> Yeah. to um if we upload any videos, you'll you'll get like a notification about that. So, yeah, we'll post videos over here. We'll have some shorts and realels, too. And reals will go over to Facebook and pictures and stuff, but the longer videos will be over here. And uh yeah, you guys will get to see Jamaly on the trip. Charlene says, "Purse is 8 by 11. She loves hers."

[00:45:01]>> Where's my story? extra large mug.

[00:45:03]>> The mug is huge. You want to grab that real quick? I'll just show you guys how big the mug is.

[00:45:08]>> Do we have the extra large?

[00:45:09]>> Yeah, it's 20 oz. That's the only size that I put up this time. And it is so great. Have you thought about an auction? No, it's just for sale. The the artwork is available. It's just for sale. And actually, um, we've talked about we're going to put up the drawing that he's working on for the collectible magnets. There's only going to be so many magnets available because we need a certain amount to cover lodging at conference. So, I think it's 50.

[00:45:37]There'll be 50 magnets available and that's it. Once they're gone, they're gone. But, I think we're going to sell the original >> art >> art for the magnet as well. So, that'll be fun. We haven't done that before. And this is the mug.

[00:45:53]It's good quality mug. And it is huge.

[00:45:57]>> Big old mug. It is big. It is deep.

[00:46:00]>> You can you can drink soup out of this mug. Oh, yeah.

[00:46:05]>> It's almost as big as my face.

[00:46:06]>> It's as big as your face.

[00:46:08]>> Yep. So, that's good. Um, yeah. And Linda says she just canceled her Facebook subscription and signed up for YouTube. Um, so the there is a difference. The $4.99 YouTube subscription does not include the weekly live, but it is for support. like some people just don't really care about the live streams and they just want to support. So that's what that's there for. Um the next one up the fan level subscription is for the Saturday weekly lives and sometimes we do them on Sundays. So I'm just going to say the weekend live streams that we do once a week. Um if you just want to keep up once a week with what's going on and you don't have to be there. You can replay them at any time and you can see all the old ones as well. Um I I forget how much it is, but it's just slightly more than that $5 a month. And then the next one from that is the friends level, and that gets you three live streams a week. We do two during the week and one on the weekend, and you can attend all of those. Um all of that is available right here on YouTube. And I do recommend that those who have the Facebook um subscription think about converting over just because it's more seamless, but we will continue to post over in that uh Facebook subscription group the links to the weekly lives. So, it's not like completely necessary, but it just seems like, you know, for kind of weaning over onto this platform eventually, maybe they might get rid of that on us eventually, Facebook, the way they're things are going. Like, that's the only um thing that they're even paying for anymore over on Facebook. So, it's pretty bad. Um, please explain what the $4.99 is. The $4.99 is in support of our family. So, that is what helps pay for medical insurance to cover Anna's medical needs.

[00:48:06]That pays for Anna's uh language lessons. It pays for these trips down to Florida. The gas, the lodging, all of the medical out-ofpocket expenses that come with that. Um, that's all of the subscriptions are supporting our family and everything that we need to do and supporting us in sharing all of that with you. like it gives us the ability to continue sharing what's going on. A lot of people have been following along since Anna was a baby.

[00:48:40]So, um, no, we're not planning on doing any kind of auctions. It's just too much. Um, it's we don't have the capacity really for that. So, we just post them for sale on the merch site and you know, anyone who's interested in owning a piece can go there and find one and and grab one for themselves.

[00:49:06]Any other questions before we say good night?

[00:49:11]I think that's about everything that's going on right now. And you know, we're looking forward to sharing the trip with you guys and uh looking forward to getting this over with early in the year so that we can relax the rest of the year and really focus on getting some stuff done. I feel like we haven't been able to sit. It feels like every time we settle down for like a few weeks and start to work on projects like finishing Anna's room or I want to do stepping in the mud lives and Aaron wants to get his drawing stuff going and take on freelance work for that and every time we start to settle in >> we have to go again.

[00:49:52]>> So I am looking forward to getting this trip over with and getting back home honestly. Um, thank you so much.

[00:50:02]Safe trip to Florida. The the conference is um Oh, where? It's in Ohio. That's why we're going to hit it up on the way back. It's like right on the way home, thankfully. Otherwise, we likely wouldn't be going.

[00:50:17]Thank you so much. Yeah, we'll we'll keep you guys posted. Um, keep in touch and think that's about it.

[00:50:25]>> Yeah. Um, enjoy your day off tomorrow if you get a day off tomorrow.

[00:50:29]>> Oh yeah. Yeah, >> true.

[00:50:30]>> If you get some time and um remember Memorial Day is a a day or weekend of remembrance. So, all right, the outside lights just went on.

[00:50:46]>> Have a good night everyone. We'll talk to you soon.

[00:50:49]>> Bye >> bye.