Day in the life | Cornelia de Lange Syndrome

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  • Опубліковано 23 січ 2025

КОМЕНТАРІ • 169

  • @conniemaniaci3612
    @conniemaniaci3612 Рік тому +3

    Jessie is such a good helper. Bless her little heart.

  • @lillab4823
    @lillab4823 Рік тому +7

    You don’t owe anyone an explanation for your decisions. You are such a strong amazing mama.

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Thank you

    • @virginiaherrera5047
      @virginiaherrera5047 Рік тому +1

      As long as Freya is healthy and happy .you will always have people that do not agree with your choices. You are a great mother God bless.

    • @kimlyman7470
      @kimlyman7470 Рік тому

      Amen to that! You do not owe anyone an explanation. You are her mom-even though we only see what you show us-it is evident that Freya (and the rest of the kids) are happy. Thank you for letting us in your life and to follow your journey. !!!!!! Beautiful family!

  • @lauraneddieable
    @lauraneddieable Рік тому +6

    Aww she did great! She is so adorable. Love her ponytail.❤

  • @bonitalonglegs8890
    @bonitalonglegs8890 Рік тому +4

    She’s a godsend, cute little girl! It’s so neat to see her unique personality!

  • @betsyslat7326
    @betsyslat7326 Рік тому +5

    What a loving, patient, advocate for your Freya! I have such respect for your decisions!

  • @ossier2796
    @ossier2796 Рік тому +2

    Jessie and Freya are too cute. Love your little doggy too.

  • @TheRosielee123
    @TheRosielee123 Рік тому +5

    I loved hearing about Freya’s lucky arm. She’s such a delightful wee girl and so loved. Hope you got some sleep Marci

  • @dawnedwall5419
    @dawnedwall5419 Рік тому +4

    Freda just melts my heart. She does good walking. Her smile is so sweet. I hope you both get some sleep. Also your bread looked amazing.

  • @vbrandon1858
    @vbrandon1858 Рік тому +9

    You are such a strong and beautiful mother! I love you're family and videos ❤️ Thanks for sharing them with us all!! "Always praying 🙏💙💜, much love

  • @sdd123
    @sdd123 Рік тому +3

    Such a precious baby.❤❤

  • @yvonnemascoll356
    @yvonnemascoll356 Рік тому +5

    Freya is the most precious baby girl..
    And she's going to be just fine she's going to walk and talk at her own pace and in Gods own time...

  • @yesseniasalazar297
    @yesseniasalazar297 Рік тому +8

    Freya is adorable ❤❤❤
    Greetings from Costa Rica 😻🇨🇷

  • @leni3765
    @leni3765 Рік тому +3

    I love Jessie J...She's beyond adorable ❤

  • @jennifer_duncan
    @jennifer_duncan Рік тому +1

    This was such a fun video! Thank you for sharing a day in your lives!
    Freya did so well walking with her gait trainer! It makes sense that you’re a bit apprehensive about regression if she has a pattern of it. It sounds like she has forward momentum, but on her own terms. 😊
    “Food-flavored water” is hilarious! I wasn’t crazy about soup as a kid either, but now I could seriously have it every week, all year long.
    I love that Jesse enjoys making bread! I love that you involve them in things like that-such great memories made and wonderful skills to last a lifetime. And it turned out beautifully! And the excitement about dessert at the end was so sweet! ❤️

  • @Vale-kg3vd
    @Vale-kg3vd Рік тому +3

    I find Freya so funny you can tell she is having lots of fun and is just happy❤

  • @reneemedeiros6
    @reneemedeiros6 Рік тому +2

    You are an amazing mom and have an amazing family . I look forward to your videos everyday. No matter what mood I’m in Freya’s puts a smile on my face . 😊

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Thank you so much!! I’m so glad she can bring you some joy

  • @racheltessmer925
    @racheltessmer925 Рік тому +2

    Hello! Oh, Freya! You be you! Marcy...take care of You! Jesse is so empathetic...❤ Always, humble thanks for allowing us into your home. Always, cheering you on. Love from Minnesota ☃️💖!

  • @vdeniceeckert3494
    @vdeniceeckert3494 Рік тому +3

    I love the fact that you hold her and give her a bottle, great bonding time

  • @suemuster9826
    @suemuster9826 Рік тому +1

    Love that, Freya was walking. Your daughter is amazing kneading dough. I love watching your family❤❤❤

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Thank you so much! Jesse loves cooking everything.

  • @Roro19609
    @Roro19609 Рік тому +1

    Loving seeing Freya smile. She seems like so content. Glad to see all members of your beautiful family. Marci, today you did look tired, but you still manage to cook and spend time with the kids and hubby. Blessings to your family…❤

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Thank you so much! I was tired. But life goes on.

  • @amyb2646
    @amyb2646 Рік тому +2

    You have the sweetest family, Marci! Freya is such a delight, with such a beautiful smile. That homemade bread looked so good! I love homemade soup, too. That made me laugh that the children call it food-flavored water lol That’s so funny. Sending all my love and hugs to you all, God bless you all 🤗❤️🙏🏻🥰

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      My kids are all fairly picky 😂

    • @amyb2646
      @amyb2646 Рік тому +1

      @@Freyasluckyarm aww lol 😂 well they sure are nice! ❤️💖

  • @kathykupanoff6023
    @kathykupanoff6023 Рік тому +3

    Praying for a better night of sleep for you, and some better nights ahead. It’s so hard to be a tired mama. Hopefully Freya does keep moving forward with no regressing 🙏🏼. Hi, Jesse! You’re such a sweet helper! And Freya Hugs for such hard work! 💜💜💜

  • @letsdothis-chris
    @letsdothis-chris Рік тому +1

    Aww she does so much already learning new thing's. I think her taking a bottle is just fine. If she needs that for herself. I wouldn't worry what anyone says. Your the mom and you know what's best. She is so darn cute!!

  • @hermanklump8983
    @hermanklump8983 Рік тому +1

    So great seeing Freya walk! Hope you get some rest.

  • @donnathomson4048
    @donnathomson4048 Рік тому +1

    Freya is so cute n does so well walking. Give you lots of credit making so many different food items.

  • @Danielleb723
    @Danielleb723 Рік тому +1

    Love ur hair. I want to cut mine so bad. I need a hair reset. You guys do an amazing job parenting Freya. She looks so happy.

  • @lindamarie6574
    @lindamarie6574 Рік тому +1

    Freya has a beautiful smile😊Jessie too! The little chef! That bread looks so good! I’m a soup eater too lol😊

  • @patsyhelms1102
    @patsyhelms1102 Рік тому +1

    I make bread also. Have the same soup problem as you do.
    I just can’t tell you how cute Frayer is. Love her please don’t feel like you have to explain why she has a bottle.
    You are her mother and caretaker and you certainly know what’s best for her.
    Your videos are my favorite. Can’t wait daily to see what Miss Frayer is doing today.

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      For me it is all about education. If I explain it then maybe people will be more kind to others in the same situation

  • @heidithornbladh4763
    @heidithornbladh4763 Рік тому +2

    Your family is so beautiful ,you are so blessed.

  • @kathryndomer2109
    @kathryndomer2109 Рік тому +2

    Good morning Mama and Freya. You are styling your hair beautifully and Freyas too. We are getting Spring here. I hope you warm up soon. We had hardly any rain or Snow this year. Use the bottle as long as it calms her. My Son had a Binky forever. You and your family have a great day. Love from New Jersey.🙋🏼

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      I’m jealous. I wish we would warm up. We have another week of snow forecasted this next week

  • @barbg1906
    @barbg1906 Рік тому +1

    Food flavored water ... isn't that stone soup? 😆 The bottle: your daughter, your choice. It's all good. 💜And Jesse, I love how you include us when you explain what you're doing! Your videography skills are fantastic! 😉 Love when the whole family is involved! 'Til next time! 💕

  • @heathertesoriero2107
    @heathertesoriero2107 Рік тому +1

    Freya is gorgeous. I love watching her play. I’m with you marcie I love home made soup and fresh bread yum. You are a fantastic mum. Your whole family is beautiful. Keep up the good work. Greetings from Melbourne Australia 💝😀

  • @juliefreeman4199
    @juliefreeman4199 Рік тому +2

    I totally agree that Freya should be using whatever you believe works best for her, period! People just don’t get it. You are doing above fantastic as a mom. Don’t let anyone tell you otherwise. I admire you and oooo that bread looks yummy! God bless! Oh and I love soup!!!😊

  • @autisticrebornmommy
    @autisticrebornmommy Рік тому +1

    Love ur videos and all ur older kids are a wonderful help ❤❤

  • @HarrietSudduth
    @HarrietSudduth Рік тому +1

    Thanks for inviting us into your family. You're all so loving and supportive. I'm a soup person and would love to have it 365 days a year.

  • @kelliewallace8771
    @kelliewallace8771 Рік тому +1

    Love your videos ...love hearing about Freya disorder you explain very well

  • @brendonwilhelmi_7251
    @brendonwilhelmi_7251 Рік тому +1

    Jesse is such a sweet soul like her momma.

  • @hildacardenas-cn2pu
    @hildacardenas-cn2pu Рік тому +2

    She’s so adorable 💜great job Freya 💜on ur physical therapy walking was awesome u did amazing 👏🏼 💜

  • @lizziecarter753
    @lizziecarter753 Рік тому +2

    I been watching Stephanie Georg videos about Sebastian and said go and see your video which I have subscribed right now and I from UK my heart's goes to Sebastian lovely little boy and my heart's goes out her mother too

  • @hollymeyers7796
    @hollymeyers7796 Рік тому +1

    I just love your hair ❤️❤️❤️❤️

  • @patriciaharkin1571
    @patriciaharkin1571 Рік тому +1

    That was a nice smooth day, now I hope you all get a good night's rest. God bless.

  • @micheledavis3735
    @micheledavis3735 Рік тому +3

    Please, I beg of you...if you cannot be kind, be silent. If this baby is using a bottle, it's because she needs to use a bottle. If she has an oral sensory fixation, let her and her family do the things that make her happy...we know she will not swallow the cantab or the beans from her game. She self soothes and you've got no idea what's going on in her little head or why the things she loves soothe her. I just cannot take the judgement from people who will NEVER be faced with a baby with this syndrome and also, she's not your baby. Just think before you speak with unkindness or judgement. I'd love to have Freya in my life. Wanting children more than anything in the world makes you realise how much you just want to give cuddles and kisses to all the babies you can!❤

  • @deniselivingston8331
    @deniselivingston8331 Рік тому +2

    I enjoy your videos so much. Freya is adorable. Can I suggest you use a better mic. I have all my volumes up and wear headphones and am having to use cc to follow along. Thank you

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +2

      I’m currently just using my phone to record so it unfortunately is what it is until I can find a camera to use

  • @savinaking8637
    @savinaking8637 Рік тому +1

    I hope you had an energy drink or some nice coffee, you just look like you need a good night's rest.
    You are amazing with all your wonderful family to help❤

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Yes! Thank you! I am always drinking caffeine 😂

  • @MarilynHolmes-kj2qc
    @MarilynHolmes-kj2qc Рік тому +2

    Marci, how does Freya respond to having her hair done, getting dressed, brushing her teeth. When she has a poor night of sleeping is she less likely to be content? What a great example on patience and encouragement you all show in all that is part of your days and nights. She indeed does work hard when she is in school and physical therapy and what a insight you have mom knowing that. Sleep well I pray, tomorrow is another day, Jesse you are quite the helper, your bread looked delicious! Always in my prayers.

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Freya is great about getting her hair done. She sits still and lets me do it. Getting dressed is another story. She is a typical toddler and crawls away

  • @tanagiberson4770
    @tanagiberson4770 Рік тому +2

    have you heard of Billy shoes. I love the pt instructors socks. I love soup 🍲 😋

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Yes! The smallest they go is a size 5. As soon as Freya’s feet are that big she will definitely get a pair

  • @stephanielawson9656
    @stephanielawson9656 Рік тому +1

    Your bread looked amazing!!

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Thank you 😋 I can’t eat it because I’m gf but it smells really good and Liam chris and Jesse love it

  • @ailsamallison3061
    @ailsamallison3061 Рік тому +1

    Yay Freya she is doing so well ❤

  • @conniebaker1958
    @conniebaker1958 Рік тому +2

    Do you do therapy with Freya at home? The client I had to do his therapy once a day for practice. He hated wearing those. But yay Freya looks you put them on with no problem. You are a awesome and busy momma

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      We do if it is in our day. Like I don’t put special time aside to do it.

    • @conniebaker1958
      @conniebaker1958 Рік тому +1

      Yeah I get it. Probably make her muscles sore. The kid I took care of just hated therapy because of that.

  • @davidfrohman4351
    @davidfrohman4351 Рік тому +1

    Don’t worry about the bottle, you know her best and are doing amazing job

  • @vickismith3290
    @vickismith3290 Рік тому +1

    Thanks for sharing your day.

  • @purpleandred7
    @purpleandred7 Рік тому +1

    My favorite color is purple too 💜

  • @Sandra-pm3it
    @Sandra-pm3it Рік тому +1

    Your bread looked so good!

  • @Share2885
    @Share2885 Рік тому +2

    Wonderful family

  • @savinaking8637
    @savinaking8637 Рік тому +1

    Melanin is good for Autistic children and can be good for CDLS as watching Sebastian I have heard this mentioned.
    I love soup too, my mum made some great soup! ❤

  • @shelbycane9981
    @shelbycane9981 Рік тому

    Good mornin Ms Freya and Marcey. I’m like you this am Freya I still need a nap. Hope you have a fun adventurous day!!! ❤❤❤

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Good morning! Hope you get a good nap in

    • @shelbycane9981
      @shelbycane9981 Рік тому

      @@Freyasluckyarm I did girl. Hope y’all did too. I bet Freya is so comfy cuddling up to when u sleep. That is unless she’s a wild sleeper lol

  • @evaklaassen4907
    @evaklaassen4907 Рік тому +3

    How late is bedtime for Freya?

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +2

      Usually around 8

    • @evaklaassen4907
      @evaklaassen4907 Рік тому +2

      @@Freyasluckyarm when my daughter was 3 she goes at 8pm to bed and sleeps till 7 am. On weekends I put her to bed at 9pm because than she sleeps till 8:30 in the morning. STephanie said that Sebastian sleeps till 4:30 in the morning and goes to bed at 6 that's a lot of sleep for a five year old. I told her to put S. later to bed because he will sleep longer.I hope she will try it out. Your both are so good moms and your kids are cuties! Greetings from germany

  • @SparklesBell
    @SparklesBell Рік тому +2

    As Freyas mama you know best. Unbelievable people have to comment negatively towards you. If a bottle works, great, it works. I guarantee if those people put your shoes on for just one day.... that way of thinking would Change. God gives you what you can handle 🙏, you are a strong woman!! 💪so with that I might share , your blessed with a mole on your nose. We are sisters of a small minority lol. My grandmother used to tell me an angel had kissed my nose lol. So I thought that was cool lol, hope not to embarrasse you. Great job Mama, don't let those small negative people chip away at your spirit , you are way too strong. 😊

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      I have plenty of freckles on my nose but the big red spot it a zit 😂

  • @lynnparrish1335
    @lynnparrish1335 Рік тому

    I know you don’t fish for compliments but I must say you are amazing.
    I cannot function without sufficient sleep (for me it’s 9-10 hours) and there’s no way I could do what you do-especially without sleep!

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Wow, thank you! And yes you could because I do 😂 I am also a solid 9-10 hr sleep person. You just survive because there is no other choice.

  • @kellybarnes4516
    @kellybarnes4516 Рік тому +2

    Marci,I am not sure if I have missed this on a video? Was Freya diagnosed before birth with CDL? Does your family have any history of CDL? I hope this isn't to personal.I look forward to seeing Freya smile everyday.

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      We have a video all about her diagnosis story. We knew she had a limb difference and was very small during pregnancy and likely had a syndrome. She was diagnosed after birth. Cdls is usually a random mutations and not inherited. Neither me nor my husband carry the gene

    • @kellybarnes4516
      @kellybarnes4516 Рік тому

      @@Freyasluckyarm Thank you for sharing!

  • @tiffanyfrazier7766
    @tiffanyfrazier7766 Рік тому +2

    Yes she loves the color purple, so hers are purple with purple butterflies

  • @vdeniceeckert3494
    @vdeniceeckert3494 Рік тому +1

    I know u guys have allergies but check out Paula Deens crockpot Mac and cheese or u can use an oven. It is honestly the best, I get so many compliments when I make it as a side to bring to a potluck.....your kids amd hubby will love it honestly and do a double batch it fills a large crockpot

  • @maryjones1
    @maryjones1 Рік тому +7

    Freya looked like a little drowsy beans as she drank her milk. When she was at therapy, I noticed that Freya mostly moved her left foot forward on her own. So cool

  • @Bindismom
    @Bindismom Рік тому +3

    I made broccoli \ cheddar cheese soup today. Soooo good with sourdough bread.

  • @justinsapey5007
    @justinsapey5007 Рік тому +2

    Hi macey I hope you and your family are doing great if you could would you like to go back to work and do you miss it love your videos.

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      I think now that I have had Freya if I go back it would be something to do with disabled children.

    • @justinsapey5007
      @justinsapey5007 Рік тому +2

      Yes I live in the UK and I used to work in a school for special need kids as a welfare assistant and I loved it was so satisfying the kids were great.

  • @davidfrohman4351
    @davidfrohman4351 Рік тому +1

    Great looking bread😊

  • @praying4America43
    @praying4America43 Рік тому +3

    PEOPLE REALLY MAKE ME SICK WITH THEIR "NONE OF THEIR BUSINESS QUESTIONS", I MEAN ITS NONE OF YOUR BUSINESS WHY SHE STILL TAKES A BOTTLE OR ANYTHING!!!! LORDY!!!! I UNDERSTAND WHY I PRAY SO MUCH, BECAUSE YOU WONDER WHY PEOPLE TAKE UPON THEMSELVES TO ACT LIKE THEY ARE THESE GOD GROWN PARENTS THAT JUST DONE EVERY SINGLE THING THEY WERE SUPPOSED TO DO!!!!!! I'm very happy to see her 😊. She looks so cute playing on that little tablet I guess. Soup & homemade bread sounds wonderful & looks even better 😊. Prayers for you all!!!!

  • @beckyrhodes8280
    @beckyrhodes8280 Рік тому +1

    There's nothing wrong with Freya still using a bottle 🍼 it helps her I would not care what anyone says. You are her mom you know better than anyone what she needs . You are doing a GREAT JOB with your kids 👍👍👍!!!! Her hair was so pretty I like it 😊👍!!! All your kids looks great 👍☺️👍!!!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️🙏!!!!!!!

  • @amberchase7959
    @amberchase7959 Рік тому +1

    She is so cute

  • @britt-louisefransson6487
    @britt-louisefransson6487 Рік тому +2

    perfekta små skor, en sak våra barn går inte på samma linje som andra barn när det kommer till mat , min dotter ammades till ett år men hon släppt inte välling/ fingrar , hon slutade med fingrar vid 9 år och välling vi 8 år

  • @ΑΙΚΑΤΕΡΙΝΗΤΣΙΑΒΟΥ

    Πολλά φιλιά στην πιο όμορφη οικογενεια❤❤❤❤❤❤❤❤❤

  • @barbhelle5481
    @barbhelle5481 Рік тому +1

    Good night Freya and Marcie and family.

  • @toniavasseur9574
    @toniavasseur9574 Рік тому +3

    How come Sebastian can’t wear these shoes

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      He has some like it.

    • @toniavasseur9574
      @toniavasseur9574 Рік тому +1

      @@Freyasluckyarm I thought he did but there’s not they’re not shoes on the bottom

  • @brendariley1303
    @brendariley1303 Рік тому +1

    If a bottle works for freya then let her keep her bottle my son wasnt that lucky the bottle didnt work for him and he had to have a feeding tube

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Yes I’m so glad Freya figured out how to use the bottle

  • @tetra3ne56scur3
    @tetra3ne56scur3 Рік тому

    @Freya’s Lucky Arm how old is Freya?
    I play Minecraft too
    Why Freya’s Lucky Arm ? Because she holds up her left arm

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      She is 3 1/2. We call it her lucky arm because she has a limb difference on that arm. Just like Nemo and his lucky Finn.

  • @tiffanyfrazier7766
    @tiffanyfrazier7766 Рік тому +2

    💜💜💜💜💜 my child has the same orthotics

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Really? We just got them. They are cute but we went from an smo to an afo so I find them difficult to get on.

  • @ossier2796
    @ossier2796 Рік тому +1

    The bread looks delicious

  • @janetslicer3637
    @janetslicer3637 Рік тому +3

    The bottle makes her so content. She still sits up and eats at the dinner table. What is all that fuss about? If you don't like it, don't watch.

  • @janetdunn8220
    @janetdunn8220 Рік тому +2

    You and Freya are amazing. Using a bottle is actually very good. It requires using the throat, mouth, and facial muscles. A great way to help many issues.❣️🦋❣️🥰

  • @Sunshine-se6yn
    @Sunshine-se6yn Рік тому +1

    Soup and bread-I can smell it from here!

  • @asliozsar
    @asliozsar Рік тому +1

    ❤️

  • @bcg2010
    @bcg2010 Рік тому +1

    The word is regression. Not sure if anyone else said that.

  • @jordangristina615
    @jordangristina615 Рік тому +1

    Hey my love I just want to say sleep disorder is common in many special needs disorders like autism like you just said CDL I have aspergers and bipolar social disorder and I also have trouble with sleep as well I take melatonin now for sleep so maybe you need to give Freya some melatonin

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому

      Yes we do give her melatonin. It seems to work pretty well

  • @sonjalee9433
    @sonjalee9433 Рік тому

    How she has one full hand not other one?

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +2

      She was born that way. We have a video all about her limb difference.

  • @kellyburnett1833
    @kellyburnett1833 Рік тому +1

    I was wondering if she liked the water, obviously she loves it...😊

    • @Freyasluckyarm
      @Freyasluckyarm  Рік тому +1

      Have you seen when we went to the pool? She loves water

    • @kellyburnett1833
      @kellyburnett1833 Рік тому

      @@Freyasluckyarm Oh ..I have to find that one. ⛲🌊 ❤️

  • @Leslie_ann_h
    @Leslie_ann_h Рік тому +2

    I think the word you were looking for was- regress......
    Welp, never mind, you found it..... 😅😅😅

  • @kathleencorreia2813
    @kathleencorreia2813 Рік тому +1

    Please just allow your little Freda drink her bottle in peace.

  • @tracethomasvickers2224
    @tracethomasvickers2224 Рік тому +1

    Home made soup is the best

  • @Mary-ty3yc
    @Mary-ty3yc Рік тому +1

    Wow, you look alot like Amanda Knox. Wow

  • @chargalbreth3052
    @chargalbreth3052 Рік тому +2

    I think the word you were looking for is regression. ❤