We are ready for summer vacation

Added: 2026-05-15

[00:00:01]Hello everyone. My older kids just got home. I am just waiting for Freya and Jesse to get home, >> but I've got to run and do a couple things before they get home that I know I won't be able to do after they do.

[00:00:15]If you don't know me, my name is Marcy.

[00:00:17]Welcome to our channel. I have four kids, youngest of whom is Freya. She has a rare syndrome called Cornelia Dang syndrome. It affects her growth and development. And our channel is all about how we do life with a kid with a rare syndrome. So, let's go do a couple things.

[00:00:43]>> I mean, that gives me the most rooster.

[00:00:47]Here's my peas growing.

[00:00:50]Got to get something. They can climb on this, but it's always just a little too far to climb up. So, they're looking good.

[00:01:00]My oregano has absolutely taken off.

[00:01:03]It's going crazy.

[00:01:08]The beautiful chives, garlic.

[00:01:13]This is all yarao. Hasn't started flowering yet, but it will.

[00:01:18]Here's all my plant babies. Got the peppers and then the tomatoes. I keep thinking that I'm going to plant them and then the temperature drops again.

[00:01:26]So, I'm waiting until next week in hopes that the temperature stops dropping, but in Utah, you just never know.

[00:01:40]Starting to get some flowers here. We've got evening primrose, chundula.

[00:01:46]I forget what these purple ones are called, but they're really pretty.

[00:01:51]Got some yarao. And then I think this one's called denths. I might be getting it mixed up with another one, but very pretty.

[00:02:01]And then this is our local lupine.

[00:02:06]Oh, it's a little ladybug on there.

[00:02:09]And over here is our local globe malo.

[00:02:17]The bees are loving this. So, let's see if we can catch little poppy.

[00:02:34]And then these ones are some of my favorites. California puppies. They're also native. That's what I was looking for.

[00:02:42]Not local, native.

[00:02:49]Can you see my bleeding heart over there?

[00:02:53]Was one of my mom's favorites.

[00:02:58]Not sure what this is, but it's real pretty.

[00:03:03]Fre got a little hot on the bus, so we're putting her in front of this giant box stand, and she's loving it. You like it?

[00:03:13]Yeah.

[00:03:17]Got to cool you down.

[00:03:22]It's really hot on the bus and there's no air conditioning.

[00:03:28]They have a little fan for her, but it wasn't quite enough. Huh.

[00:03:48]Oh, it's so nice.

[00:03:51]All right, Freya, are you ready for summer vacation to start?

[00:03:57]Are you sick of going to school?

[00:04:02]Mhm.

[00:04:05]Keep getting reports that she doesn't want to do anything.

[00:04:08]Hold on. I don't want you to rip my book. But she just wants to play don't don't she just wants to play and doesn't want to learn anything which like girl saying I am ready for summer vacation. I am ready for long days of working in the garden and playing outside and going swimming and going to the river and going to the lake.

[00:04:45]Yes.

[00:04:47]Are you ready for that, too?

[00:04:52]We both have spring fever. Is that what it's called? Whatever it's called. We've got it. We don't want to do anything. We just want to play.

[00:05:04]She's got her dad's bedside table over there.

[00:05:09]Medically, Freya's doing real good. Don't say it too loud. Knock on wood. Whatever it is you do, we have her followup coming up next week with her ear doctor to see if her eard drums have healed.

[00:05:26]And then I just made her GI appointment for the summer just to follow up on how she's doing. We go about every six months.

[00:05:36]She has lost weight this year.

[00:05:40]I mean, to be fair, we have excuses.

[00:05:43]It's the sickest she's ever been.

[00:05:46]Hospitalized twice.

[00:05:48]And I'm sure her GI doctor will understand, but it also kind of makes me a little nervous to walk in there being like, "Hey."

[00:05:58]So, also this feather on my arm is not a real tattoo. I am toying with the idea of getting a tattoo there, and I know what I want, but I am anti- change for everything. Just as my personality, I don't like change. And it really scares me to put something very permanent on my body unless I know I'm going to like it and I'm going to like the placement of it. And so I put this fake one there. I think it's henna. They said it's a plantbased thing and it started out really light and has darkened just to see if I like like it there. Then if I do, maybe for my birthday I might be getting my very first tattoo ever.

[00:06:46]We shall see.

[00:06:50]You helping me cook dinner.

[00:06:57]You want me to hold you? All right, come here.

[00:07:01]We're making some curry. We need to go get some coconut milk from downstairs.

[00:07:08]Here we go.

[00:07:15]Oh, we made it. Welcome to my storage room if this is your first time. We're dwindling on the seasonal things I can. We still have beans and stuff, but it's our last two salsas.

[00:07:32]We actually are pretty good on spaghetti sauce. I need to have some more spaghetti.

[00:07:39]All of this is dwindling before we get our new crop of tomatoes.

[00:07:46]All right, let's go finish dinner.

[00:07:52]So, we've got a busy last couple weeks of school full of appointments and stuff going on at school.

[00:08:02]Huh. And then summer vacation.

[00:08:06]Where we live, we get out the week before Memorial Day or like the week of the Friday before.

[00:08:16]Are you so excited?

[00:08:19]Summertime is like my favorite because my kids are all with me. And especially with Freya, it doesn't matter how good your school system is, other people just can't care for your child like you can. other people haven't had six years of experience.

[00:08:39]Knowing how Freya communicates, knowing everything there is to know about her, knowing what noises she makes when she's reflexing, what noises she makes when she has a headache, how she communicates when she's in pain, when she's happy, when she's not. And I just feel so much better when she's with me.

[00:09:02]>> She loves all the little people toys.

[00:09:03]This and the bus are her two favorite.

[00:09:07]This button is finicky.

[00:09:20]>> You look like you might just take a little nap.

[00:09:24]You sleepy after a long day of school?

[00:09:29]>> Yeah.

[00:09:32]So that's why I'm excited for summer vacation. All my kids will be with me.

[00:09:41]>> You okay?

[00:09:45]Yeah.

[00:09:51]>> And I don't quite know how to explain the anxiety when my kids are not near me.

[00:09:58]Public school has been a great experience, but also very trying on me because there are days that I literally am like, I'm just going to go pick up my kids just like I need them to be near me.

[00:10:13]Yeah, I do.

[00:10:17]So, I always love summer because of that. Yeah, I see. What is that? An axelottle keychain.

[00:10:24]Beautiful.

[00:10:27]I love it.

[00:10:29]>> Yeah, I love it.

[00:10:40]>> Look how good that looks. I used a mix from Costco and then added veggies because it didn't have any veggies in it and added another can of coconut milk because I saw someone else say that they did that to make it go a little further and it is really good.

[00:10:58]Jesse and I decided we needed pe no chocolate chip chocolate chip cookies.

[00:11:04]So, she's over here doing the dry ingredients.

[00:11:08]I'm doing the wet ingredients. We use Bob's Redm Mill one to one flour chocolate chip cookie recipe. If you're looking for a good gluten-free chocolate chip recipe, we love this one. You have to use the Bob's Bread Mill one:1 flour, though. So, the only only caveat.

[00:11:31]Got two of our beautiful chicken eggs.

[00:11:38]Got the wet ingredients.

[00:11:41]>> The eggs.

[00:11:43]>> Got dry ingredients. We got the eggs.

[00:11:48]>> And we got the soupy.

[00:11:50]>> Hello. Are you going to be in our chocolate chip cookies?

[00:11:55]>> No.

[00:12:11]Do it.

[00:12:25]I brought Freya in to watch Steph and Sebastian's latest video and she wants to lay like this, which tells me that her stomach is hurting or her reflex is bad. Anytime she wants pressure on her belly like that, that's why. So, we're just going to sit here and lay like this and just let her be comfortable. Huh.

[00:12:48]Does that feel good to you?

[00:12:52]>> Yeah.

[00:12:54]Your belly hurting? Sometimes I'll sit and lay her up on my chest, which I'm going to try after this, and see if if that's okay with her. Cuz this position isn't the greatest for reflux because her head is the same level as her stomach. So, it's easier for the acid to get up. So, if she's a little more inclined, that's better.

[00:13:18]I convinced her as long as we're rocking, this is okay.

[00:13:22]All right. Well, I'm just going to get her to bed. I'm going to eat some cookies and get myself to bed. So, thanks as always for being here. I know this wasn't a very exciting video, but we like things around here boring and not exciting cuz that means things are going good.

[00:13:42]Um, I'm trying to think even what will be next to tell you guys what's coming up.

[00:13:49]This week is just kind of a a boring week. A lot of school stuff going on, but I don't film any of that. So, come and see what we're up to next time.

[00:13:59]Next week will be her followup after her ear tube procedure.

[00:14:04]See if her eardrums have healed. And after that, it will be summer vacation.

[00:14:10]I can't wait. So, come and see what we're up to next time. We'll see you guys then.