Day in the life of a medical mom | Thrift shopping and dinner

Hi guys, welcome back to my channel. I know there's a lot of new faces around here Uh, one of my old videos the pregnancy video, uh took off lately. So if you're new Welcome. Thanks for being here. I have lots of videos on what cdls is uh birth story How cdls affects freya So if you want to go back and watch those that'll kind of give you an overview, but i'll give you a quick one now I have four kids. My youngest is freya. She has a rare syndrome called cornelia delang syndrome It affects her growth and development She is six years old and our channel is all about how we do life with a child with a rare syndrome I usually post two times a week on youtube. I also have instagram facebook and tiktok All freya's lucky arm if you want to follow us there I did not post earlier this week because um My one of my best friend's daughter She is local to us. Um Freya and her went to preschool together she did have a disability but was generally really really healthy and It was very unexpected and I have been grieving it feels weird Because clearly she wasn't my daughter but We were very Very very close and it is hitting me really hard And kind of not in the way. I thought it would I thought it would hit me harder because That could be freya, you know any day she could get a sickness and be gone But it's hitting me harder just on a human level of a mother losing her child Unexpectedly and Just the reality of that um She was a light You know, everybody says that about people that died, but she truly was just a happy person and Loving and caring and always smiling And she'll be missed so I figured i'd Film a quick video today because I didn't earlier this week because of the news of her passing and then this weekend we have uh her viewing and her funeral and all the things so I this is just gonna be a quick video of what i'm doing today. Uh freya Does not walk she uses a wheelchair and she also bum shuffles as bluey has made this very Popular if you guys don't watch bluey, they call it the bum shuffle But she basically scoots around on her bum, which is great. It gives her independence. We love it It also rubs holes in her pants and I just had to throw away five pairs of pants and I have a lot of people because I do sew her Lucky arm side. She has a limb difference on her left side and I do sew her clothes to Help with that And a lot of people have asked me why don't you just like put a patch? Why don't you sew sew extra fabric in there? I have not found a way that I feel like would look good um I could sew a random patch on the butt but that kind of looks off And then if I sew more fabric in like to reinforce it She still rubs off the fabric on the back So it just looks like she has a hole in her pants with random fabric on the back. So just for the sake of Looking nice. We just frequent our thrift store all the time and find her new pants at the thrift store And that's where we are now. So let's go find some pants for freya so I always try to look for jean material because those are harder to wear through than like the thin legging fabric And at the thrift store They don't really separate it into sizes. It's just like toddler And you have to look through I found these they're a size four Freya currently is a size three around the waist but a four in length. So depending on how we can Make the waist smaller Those will work. I then went over to the boys section because they tend to have a lot more jeans Than the girls section and honestly, I feel like they look the same. They're all toddler sizes I was able to find that black pair And then all the rest were a size five, which is unfortunate because they were really really cute All right, three pairs of pants for seven dollars. Not a bad day Found two in the boys section and one in the girls section And with kids jeans, I feel like it's all the same Um now we're headed off to walmart My jesse jane Needs some shoes. She's my nine-year-old and she has been growing finally she's always been such a tiny thing and she still is but um, she outgrew her tennis shoes we have All other different types of shoes that she still can wear and still fit into but the tennis shoes She needs new ones. So we're gonna go see what's available and Gotta think about dinner I don't know what to make So we'll see if we have some inspiration when we go in there for dinner and then I think we're just headed home to get the girls home from school I always have to stop by the gardening section and see if there's anything I need Which if you guys know me I have lots of seeds and probably need nothing But you never know I should probably check and see what I have before I decide if I need anything, but What fun would that be? The only request from jesse was that she wanted black tennis shoes And these were the only black tennis shoes that were there. So I think she's actually really gonna love them They kind of have the rainbow laces and the rainbow on the bottom Which is right up her alley I just got myself a rotisserie chicken. We'll see what we did that when we get home Do you like your new shoes? Yeah, I love them They're the only black pair. So Jesse requested black shoes But they're rainbow too, which I thought was very cute. Yeah Freya, how was your school day? I got a call that you were upset after lunch Yeah, were you upset? But they gave her gas meds and then she felt much better. They said which is good Did you have a good day at school? Did you have a good day Yes, okay good All right, we decided to have tacos With our chicken because it's nice and easy And easily gluten-free. Um, I think I can these beans on a video um quick and easy when you I mean, I guess if you buy beans from the store, that's quick and easy, too but we Can our own beans which is nice and then i'll just heat up some tortillas I always just pull these off because my girls love them. So We'll pull those off and put them to the side and then if you really want to do something amazing you can Make chicken broth out of your chicken bones when you get a rotisserie chicken And it's so good. I definitely will be doing that tonight You can do it in your insta pot or your crock pot or on your stove top and it's so easy Look who wants a chicken tax Like I say you guys she's always there you go right behind me always Especially when chicken's involved suki sit Good girl You want to come help me dinner? Yeah, you want something in here for sure You come to help mama Yeah You hungry should we get you something to eat or you drink you wanted a cookie cookie If you want to share that I will have some of that No, that's it for you Can you show everybody your cookie This is this brand Don't know how you say it. Can you connect? It's dairy free peanut free Soy free gluten free all the freeze and it tastes fairly good for all those allergen freeze I actually have to get one last thing It's our micro greens. Jesse Loves the micro greens, huh? JJ She actually got a micro green growing kit and that's when we first started growing them and If it can get my kids to eat green leafy things then Let's do it. You can sit down while I do this They're supposed to be like more nutrient dense than lettuce and things Here we go So for Freya's dinner, we have beans cheese crackers Oh water She'll probably eat None of it Sookie might eat all of it I love the skin of the chicken Here All done all done with dinner, I don't think you ate a thing you had some water though You did you had some water All done Were you you just got a little gassy after lunch, huh? Yeah It's now the next day I forgot to close out the video with Freya which makes me so sad I know you guys love seeing Freya Um, but I have Sookie here You say hi Just cuddling. Yeah. Oh my goodness. So sleepy Thanks for hanging out with us yesterday you guys. I hope you'll come and see what we're up to next time We'll see you then