Are the holes in her eardrum healed?

Added: 2026-05-20

[00:00:01]Hello everyone. It's been quite the morning.

[00:00:06]Uh Freya didn't sleep last night again. Uh woke up at 4:00. I mean, I guess she slept all night, but woke up at 4:00. Luckily, she was able just to eat and have a cuddle and go back to bed in my bed. So, like, I didn't get great sleep after that. But today is our followup for her ear tube removal procedure. We're going to go to the doctor. He's going to look in her ears and let us know if she can get them wet, which is very important because it's summertime. And we're ready to go swimming almost. Um, we woke up. We live in Cedar City. It's a mountain region of southern Utah.

[00:00:49]And there's like 3 in of snow on the ground, which is pretty par for the course. It's the last week of school this week, and we usually get some snow the last week of school. Um, it doesn't snow all winter, and then come May, it snows.

[00:01:11]But I'm just happy we don't have field day, which is an outside activity. And on the last day of school, they do outside activities at my kids' school.

[00:01:21]And so, it's really a bummer when it snows on those days, and it's not supposed to. So, we're happy about that.

[00:01:29]My beautiful flower bed that I showed you guys is now all covered in snow. I hope that some of them survive.

[00:01:39]I'm sure they will.

[00:01:42]If you don't know me, I'm Marcy.

[00:01:45]I have four kids. the youngest of whom is Freya. She has a rare syndrome called Cornelia Dang syndrome. And we just talk about what our life looks like with a kid with CDLS.

[00:01:58]She slept in this morning because she didn't sleep last night and so we're running actually a little behind. Not too bad actually. I am very much a person that likes to be on time. Even early early is on time for me. So, I think we'll get there in plenty of time. But, we just had a slow start. Didn't have time to video anything because I knew we were going to be late. Look how absolutely gorgeous it is, though.

[00:02:33]Don't worry, you're on my what do you call that? the thing that holds the phone.

[00:02:40]Beautiful.

[00:02:43]We made it. So, we live on the mountain and then you go down the mountain and this is like desert area. It's always like 15 to 20° warmer and I enjoy it. Especially on the snowy days.

[00:03:04]You ready to go >> that's me?

[00:03:46]I'm more We're all done. He said it looks like they're completely healed. He did have to clean out some ear wax, which they have to do every time. My kids just have waxy ears. I don't know. She did not enjoy cleaning out the ear wax, but he said everything looks healed. They did a pressure test on both and he said they're both closed.

[00:04:23]Yeah, they're both closed.

[00:04:25]He said one might have a little fluid behind it, which like we knew the ear tubes drain the fluid out. The problem is is that her body does not like the ear tube. So it kept growing tissue over it to kind of like it. It just didn't like it.

[00:04:45]So hopefully the fluid behind the ears just doesn't cause any problems. And yeah, and we're fine. He said you can take a bath.

[00:04:54]She's been taking baths. She just hasn't been able to fully submerge her head, which she loves. He says you can put your head in the water and we can go swimming and baths and all the things.

[00:05:04]We stopped at there's a cute little coffee shop here. That's where we're at.

[00:05:07]We're stopped at a coffee shop. We're going to go get some coffee for mom cuz she hasn't had any breakfast. They also have some gluten-free treats here that are really good. And then we're going to go to Costco.

[00:05:19]Yeah, Freya loves Costco.

[00:05:22]But we're gonna go get coffee first.

[00:05:24]Okay.

[00:05:31]>> Gave her a sticker.

[00:05:40]>> So she know Who's that? We made it to Costco.

[00:05:57]>> Freya does not like sitting in the cart.

[00:05:58]I try to have her sit in the cart for a couple minutes to hopefully get used to it. But usually what happens at Costco if I bring her wheelchair and I don't have another person. I have to like push the cart and push the wheelchair and it's difficult. So we try to sit in the cart, she does not enjoy it.

[00:06:17]>> Let's go shopping.

[00:06:20]Did we find your favorite?

[00:06:22]Which apple do you want?

[00:06:25]You tell me when to stop.

[00:06:28]Oh.

[00:06:30]Oh.

[00:06:32]Which one?

[00:06:35]This one. Do you want to get it?

[00:06:40]That's the one. Okay, let's get it.

[00:06:45]We got them. We got you some apples.

[00:06:48]Didn't we? Yeah, we did.

[00:06:51]They're your favorite, huh?

[00:06:54]Got them.

[00:06:58]Did you find the most important stuff?

[00:07:03]She spent about 5 minutes in the cart and has been held the whole rest of the way.

[00:07:10]We got everything, didn't we?

[00:07:13]>> Yeah, we found everything. Yeah, we did.

[00:07:16]Now I have to want to leave her wheelchair more toward the back because I have to drop her off at school. So we got to get the wheelchair out, then put everything in, then put the wheelchair back in.

[00:07:26]>> Does that sound good?

[00:07:37]>> You be careful.

[00:07:45]You got that?

[00:07:57]All that frozen stuff together, huh?

[00:07:59]Freya, >> we're at school. Are you ready to go in?

[00:08:11]Oh, yeah. We are at school, aren't we?

[00:08:14]You want to go in and play with your friends?

[00:08:18]You only have a couple more days left.

[00:08:20]I'll let you take your lid. Deal.

[00:08:25]Deal.

[00:08:27]You guys want to see what I got at Costco? I always love seeing what other people got at Costco. I watch a woman whose whole YouTube channel is just going to Costco and telling you what's new. and Chris thinks it's hilarious and I absolutely love it. So, let's see.

[00:08:44]Okay, first we got a lot of fruit.

[00:08:46]Blueberries, two things of strawberries because they looked so good and let me tell you, I had a couple on the way home and they were really good. Um, raspberries, grapes, apples. Freya will eat like an apple a day and it's her very favorite thing. So, we make sure to get those.

[00:09:06]Puma socks because all of a sudden I have teenagers and my socks go missing.

[00:09:10]And I remember this happening to my mom and thinking she was making too big a deal out of it, but she was not.

[00:09:18]Chocolate chips, popcorn.

[00:09:22]What's over here?

[00:09:27]I absolutely love these crackers.

[00:09:29]They're gluten-free. They're almond flour, so Freya can't have them and Jesse doesn't like them. But if you're gluten-free and want a good cracker, I love these.

[00:09:38]Got Goldfish.

[00:09:40]Liam and Chris can eat gluten. So, we have a couple things throughout the house that are gluten. Goldfish is definitely one of them. Got these two pairs of shorts for Liam.

[00:09:53]Liam is taller than me. We just measured him. Let me see how tall he is.

[00:10:01]He's 5' 10. He's just turned 14 and is growing out of all his clothes. So, I got him two new pairs of shorts for summer.

[00:10:11]Toilet paper was actually one of the main reasons I went to Costco cuz toilet paper was on sale. I like the Charmin plain Greek yogurt to go with all the fruit. French fries. I had never seen these at Costco before, but we go through a lot of French fries at our house. Brought Worst Kirkland brand built protein bars. I love these. The puff kind.

[00:10:36]And these ones are gluten-free. The cookies and cream one were not. And I was sad about that. But these ones are uh regular chicken nuggets for Liam.

[00:10:53]Glutenfree pizzas. We love these.

[00:10:58]I'm a make everything from scratch type of person, but lately my life has been so absolutely crazy that I'm looking for like easy meals.

[00:11:08]Chicken nuggets, pizza. I grab a salad and put it on the side and then tell myself it's healthy. Um, I forgot this.

[00:11:16]I've gotten these carnitas before and they were good, but I also saw Aros e foes beans and rice. Uh, thought that would make an easy meal, the carnitas and the beans and rice.

[00:11:32]Of course, got a rotisserie chicken. I will make something with that tonight.

[00:11:36]We usually do quesadillas or soup or enchiladas, tacos, something like that. Uh, dishwasher detergent, kitchen bags, diet coke, of course. I got ground beef.

[00:11:53]I'll take this and separate it into like one and a half pound packages and throw it in my freezer.

[00:12:03]These I have never had before, but I was intrigued because I like edetamame. It feels like they're like roasted.

[00:12:10]Oh, yeah. It says right there, roasted edamame with salt. So, try those out. And then last but not least, fruit snacks. And that's my Costco haul.

[00:12:26]I'm very excited about most of it. It's always a good day when I can go to Costco. Our closest Costco is an hour from us, but luckily it's where all of Freya's doctors are. So, every time we go see a doctor, I go to Costco.

[00:12:39]I wanted to report back on these.

[00:12:42]Different than what I thought they would be. Really good. They remind me a lot of a pumpkin seed.

[00:12:49]like you know that really dry salty.

[00:12:56]They are good.

[00:13:03]I just got off the phone with a really good friend. Um, if you guys remember Freya's friend that died earlier this year, it's her mom.

[00:13:18]And we just were talking about like life and people and like being there for your people and being a good person even when bad things happen.

[00:13:33]And I just want to leave you guys with that. Like be the good in the world.

[00:13:39]Help people out cuz everybody is struggling.

[00:13:43]And love your people and be there for them.

[00:13:48]I'm going to go take a nap. Two nights of not sleeping uh has caught up with me. So I'm going to go take a nap until my kids get home.

[00:13:59]We'll see you guys next time.