Ive seen other Cornelia De Lange children on youtube and your daughter does so much more! My daughter was diagnosed with Opitz Syndrome, but thank God she has a milder form of the disease and can eat almost anything, but she does not talk and had to have corrected scoliosis. As special needs moms, we come to appreciate what our children CAN do despite the disability. Great good luck to you!
@@FreyasluckyarmI totally agree. Every child is totally different. In my eyes she absolutely precious and does an amazing job at what she does she is so smart. ❤
Freya looks older today. I don’t know if it’s the ponytail or what but she looks older today. Cute as a button as always for some reason she looks a little older to me today Sebastian and her are my favorite people. You are an amazing mom you do a great job as a mom to all of your kids.💜
Marci, you are such a chill mom. Just the kind of mom Freya needs. Your family is so blessed and I know you feel very blessed as well. Freya really is thriving ❤. I'm looking forward to seeing her with her wheelchair. She will be zooming all over the place 😂. Have a wonderful weekend!
You know Marci there’s nothing quite like seeing a young child feeding herself/himself for the first time. It makes me ( anyway) feel so happy rewardingly beautiful. Well done Freya, keep it up. Thank you!
What a great job Freya did using a spoon! If there’s anything I’ve learned about life in my 61 years on earth, it’s that “worry” does not solve any problems. Usually easier to say than do. Unfortunately, it’s taken a long time and many low valley’s to get to that conclusion. Your attitude is wonderful and will serve you well. I get such joy from watching Curious George Freya doing her exploring❤️. The jar lid toy was too cute!
Loved the jar lid on her face. At first, i had to look hard. Yes, she looked like a tiny scuba diver. I also saw your fluff ball while you were talking. I love your family, and I love Freya. I'm always amazed at how much she does. ❤❤❤❤❤
Such a journey!! when you are dealing with something uncommon. Kudos to you for taking it all in stride and for producing such a happy little girl. I 'm sure Freya being your fourth child means you are a little more relaxed. II love the constant stream of noise she makes. She sounds contented and completely connected.
Aww, not the news you wanted but you're handling it well. You're a great Mom Marci! And Miss Freya was loving that fountain! I know you'll do whatever makes Freya thrive! She's been doing so well since I started following your family. When I pick up my tablet to check in, my daughter asks what I'm doing...." I'm checking on Freya!!" I love her so much! ❤
Thank you for sharing with us about Freya! I love watching her grow and thrive. You are an excellent mom. You have taught me so much. I'm a RN and in school its so rare they didn't teach us about CDLS. Again thank you your the best!♥️♥️
She kinda looks like my nieces youngest daughter. They only found out when she was 14 tge syndrom she has it is so rare they only found out because some gebetuc researcher was looking for living people with it. She was a full term baby weighing barely 5 lbs., her immune system was severely compromised, she stayed so tiny for so long. She graduated from high school specisl ed. She is just under 5 feet tall. A very happy young lady!
One thing I learned working 30 years in PICU was that Moms of chronic kids are experts on their children. If a mom says something is wrong we would totally believe her. God bless you.
OmG. I haven’t watched you and your family for a while. I am amazed at the different sounds Freya makes. And, she signed “mom”. Your little angel is doing well. ❤
Use thickit with thin liquids. I’m an RN, have used it with my patients for years. Absolutely no taste, no color. Just try it once with water. It’s amazing.
The closed caption said she was saying momma mom mom mom mom. She is going to talk a little soon. She is just so adorable. Uh oh, water fountain. 😂😂😂❤❤❤
Freya was having the best time at the air vent. I did see sign ‘Mom’, which was special, as I rarely catch on quick enough when she signs. Also, I don’t think I have seen her be so chatty as today. You weigh Freya on your scale, and perhaps the scale at the doctor’s office is calibrated a tiny bit differently than yours. Today, the doctor asked me what my weight was. I told him what it is, and he then asked me if that was in my home scale or at the office. So maybe Freya’s weight is actually the same at least. She looks to be doing very well in all areas. 😊
I love watching her enjoy the echoey sound of her voice in that vent/ register! Adorable!! I remember doing that same thing when I was young! It was soothing and fun at the same time!
Sweet Freya the scuba diver! Also Freya the musician playing the aircon grille with fingers and singing along-did she say Mom? She’s a busy busy little girl, so maybe she burns more calories now. Love how you fix her long hair so nice. ❤️
My grandson doesn't have CDLS, but he does have another chromosome disorder that causes multiple physical and developmental issues. He got a g-tube at age 3, and honestly it's a godsend. So many reasons, some you mentioned - meds go through the tube and not by mouth and supplementing hydration being among them.
I just stumbled upon your video because of the RUclips algorithm, and at first, I thought your daughter had VACTERL Association, like me. But, Google is indicating that it is different. Those of us with VACTERL typically have limb differences, and my right arm looks similar to her left arm. We can also have GI issues and esophageal atresia. It's so strange how similar and yet different we are from each other. I hope she grows up feeling empowered and knowing how much she is loved.
I always feel so sad for the parent's. There is never an end to their worry.The biggest of those worries, what happens.when the parent's can no longer physically care. The poor souls who have no financial stability. I can't imagine the strain. I worked with children all form of disability 5 to 21 in a state school. Bused in every morning. 4 out of 10 father's left the mother to fair on her own. Those mothers looked 10-15 years older than the ones with partners. All so very sad.
Hi Marci please don’t take this the wrong way Please 😊 last year my daughter bought a cooling mat for our husky and I think she got it on Amazon but the dog loved it and kept him cool so I was thinking I wonder if it would work for Freya in her stroller the same way to keep her cool I don’t know it was just a thought..❤❤
Hi Marcie and your husband all your gorgeous kids and esp fraya ,it's ok I do follow Stephanie ,Giov& of course the adorable Sebastian who you guys know .would be great for you & fraya to meet Steph & Sebastian if it's possible those two kiddos are super cute and funny and smart .it's lovely to see how your doing to and see Freya how's she's doing ,learning ,health wise with her CDLS ..❤ love to you from England have the best weekend .
Freya is coming on so well. I’m on here with a new account I purchase a new tablet and couldn’t get back onto u tube with the previous account so this is a new one. I’ve been watching Freya and Sebastian from the beginning. I have a grandson who went through what little Freya is going through as I commented before about how lovely it is seeing a child feed themselves for the first time is so rewarding for the family. I’m remaining impartial of course but it was like watching my grandson doing the same again. I just had to explain, you must have wondered why I sounded overly happy for her. However thank you for understanding.
Maybe for nutrition she needs fats like fish or krill oil. Cooked vegetables for getting potassium. A hair analysis is great to do and you will know if there is lack of enzymes and a lot of other things. I do this every 6 months with the cat and once year for myself. She is a true fighter!❤❤❤
Hi, Marci Freya is always up to something. I love that little human being. She makes me either laugh or smile every time. Marci, I have a question about Freya and that can tab in her mouth. Can you explain to me what keeps her from swallowing it. I’ve been following and at first I freak out when I saw the tab in her mouth. I know that Freya is so busybody and she’s amazing. Thank you for explaining it to me. Love your family and I always appreciate your kind words. Hugs and love from Bradenton, Florida ❤😊🫶🏽
Freya is orally sensory seeking. Meaning she is using her mouth to physically sense things in her world. There’s nothing stopping her from swallowing it. But when doing this with non-food objects she has not yet swallowed something.
I just love hearing and seeing you guys!! Also I've noticed that over half the people I follow here and on Instagram you're all from Utah. I guess I just love all y'all from Utah. 🫂🙏🏼🤍☺️
Over half is definitely me exaggerating but sure seems like it. Off the top of my head I like to follow Tanner&Lauren Beeston, Sara and Derek Beeston, Sarah's brother Ryan and his partner who are both hilarious and from Utah as well. The Bingham family, Life in Holland, Jared and Britt, Tyson and Ashley Gardner and probably many more! All your guy's vlogs always make me want to come to Utah!😊😊❤
Ive seen other Cornelia De Lange children on youtube and your daughter does so much more! My daughter was diagnosed with Opitz Syndrome, but thank God she has a milder form of the disease and can eat almost anything, but she does not talk and had to have corrected scoliosis. As special needs moms, we come to appreciate what our children CAN do despite the disability. Great good luck to you!
Cdls is a huge spectrum. I’d say Freya is somewhere in the middle. I found its best not to compare her with anyone else.
@@FreyasluckyarmI totally agree. Every child is totally different. In my eyes she absolutely precious and does an amazing job at what she does she is so smart. ❤
@user-zo9dq6qc3c Don't you mean your daughter is diagnosed with Smith-Lemi-Opitz Syndrome instead of Opitz Syndrome?
3:13 I may not have been listening but I don't think I have heard so much variety of talking from her❤
@@biddiemutter3481 it is definitely more in the last little bit
Freya looks older today. I don’t know if it’s the ponytail or what but she looks older today. Cute as a button as always for some reason she looks a little older to me today Sebastian and her are my favorite people. You are an amazing mom you do a great job as a mom to all of your kids.💜
Same so I almost thought she had grown even if she actually had lost little weight.
Wow, she’s feeding herself and she’s so much more vocal than before. Way to go Freya❣️❣️
Definitely looked like a scuba diver with that jar lid in her mouth! So cute.
It was so cute
She did!!😊
lol. I thought there was something wrong with the screen on my phone when I looked at Freya’s face. It was something in her mouth. She makes me smile!
Freya is so adorable!!! She makes me smile!!
Freya is so cute. Such a sweet heart all her talking and everything.
Yup, God has you. He loves all of you more than anyone. He has a plan and it’s always best. You are in my prayers.
Marci, you are such a chill mom. Just the kind of mom Freya needs. Your family is so blessed and I know you feel very blessed as well. Freya really is thriving ❤. I'm looking forward to seeing her with her wheelchair. She will be zooming all over the place 😂. Have a wonderful weekend!
You know Marci there’s nothing quite like seeing a young child feeding herself/himself for the first time. It makes me ( anyway) feel so happy rewardingly beautiful. Well done Freya, keep it up. Thank you!
Such a precious little "scuba diver"! 😊❤
What a great job Freya did using a spoon! If there’s anything I’ve learned about life in my 61 years on earth, it’s that “worry” does not solve any problems. Usually easier to say than do. Unfortunately, it’s taken a long time and many low valley’s to get to that conclusion. Your attitude is wonderful and will serve you well. I get such joy from watching Curious George Freya doing her exploring❤️. The jar lid toy was too cute!
I love her using a spoon. It is so fun to watch
Freya is getting good at feeding herself. And I did also hear her say Mom. What a cutie 💓
Loved the jar lid on her face. At first, i had to look hard. Yes, she looked like a tiny scuba diver. I also saw your fluff ball while you were talking. I love your family, and I love Freya. I'm always amazed at how much she does. ❤❤❤❤❤
Suki is always here. 🥰
Such a journey!! when you are dealing with something uncommon. Kudos to you for taking it all in stride and for producing such a happy little girl. I 'm sure Freya being your fourth child means you are a little more relaxed. II love the constant stream of noise she makes. She sounds contented and completely connected.
Thank you. She definitely has the benefit of being the 4th child. And I absolutely adore that you love her little noises
Oh my Freya gets cuter and cuter by the day!😊
Aww, not the news you wanted but you're handling it well. You're a great Mom Marci! And Miss Freya was loving that fountain! I know you'll do whatever makes Freya thrive! She's been doing so well since I started following your family. When I pick up my tablet to check in, my daughter asks what I'm doing...." I'm checking on Freya!!" I love her so much! ❤
I love all the internet family always checking up on her
I could of sworn when Freya signed Mom she also repeated it right after you said it!
She did. I love it when she signs
@@Freyasluckyarm I actually missed the sign but totally heard it and near convinced myself I had to be losing it 😆
Thank you for sharing with us about Freya! I love watching her grow and thrive. You are an excellent mom. You have taught me so much. I'm a RN and in school its so rare they didn't teach us about CDLS. Again thank you your the best!♥️♥️
You can make your own weight gain smoothies for her to drink. Super easy and you get to control what's in them.
Good job scooping that ice cream, Freya! 🍨 🎉
I love to watch her feed herself! Love to you all!
Me too
She kinda looks like my nieces youngest daughter. They only found out when she was 14 tge syndrom she has it is so rare they only found out because some gebetuc researcher was looking for living people with it. She was a full term baby weighing barely 5 lbs., her immune system was severely compromised, she stayed so tiny for so long. She graduated from high school specisl ed. She is just under 5 feet tall. A very happy young lady!
Sounds a lot like Freya to be sure.
Hi Freya, she’s enjoying her ice cream and letting us know too. 😊❤
One thing I learned working 30 years in PICU was that Moms of chronic kids are experts on their children. If a mom says something is wrong we would totally believe her. God bless you.
You look lovely today and always. Thank you for sharing your journey with us.
OmG. I haven’t watched you and your family for a while. I am amazed at the different sounds Freya makes. And, she signed “mom”. Your little angel is doing well. ❤
So love watching your videos, just so interesting! Thank you ❤
You both are so lucky to have each other!
We are thank you
All the best Marci
Ahh listen to her😊😊😊
Use thickit with thin liquids. I’m an RN, have used it with my patients for years. Absolutely no taste, no color. Just try it once with water. It’s amazing.
We use it with her Apple juice
Freya is getting so good with the spoon. I so love to see all of her progress.
The closed caption said she was saying momma mom mom mom mom. She is going to talk a little soon. She is just so adorable. Uh oh, water fountain. 😂😂😂❤❤❤
She totally was
Hi marcy, it's nice to meet you. Freya did such a good job of feeding herself.
Freya was having the best time at the air vent. I did see sign ‘Mom’, which was special, as I rarely catch on quick enough when she signs. Also, I don’t think I have seen her be so chatty as today. You weigh Freya on your scale, and perhaps the scale at the doctor’s office is calibrated a tiny bit differently than yours. Today, the doctor asked me what my weight was. I told him what it is, and he then asked me if that was in my home scale or at the office. So maybe Freya’s weight is actually the same at least. She looks to be doing very well in all areas. 😊
Maybe. The most concerning part is that her percentile has gone down so far.
I love watching her enjoy the echoey sound of her voice in that vent/ register! Adorable!! I remember doing that same thing when I was young! It was soothing and fun at the same time!
Marci, Freya is so much more functional than other CDLS kids I’ve worked with! Hang in there and be blessed!!
Agree! of course I see brief clips of these kids lives. I just love that she taught herself to scootch around. Very special child.
Marci, you are the best mother!♥
Thank you
Be sure to take your daughter on a airplane trip to Cedar Rapids Iowa this summer to see the trains.
She's chatting well and getting tall love from Scottish Borders xx
Thank you! She is becoming a lot more vocal
Sweet Freya the scuba diver! Also Freya the musician playing the aircon grille with fingers and singing along-did she say Mom? She’s a busy busy little girl, so maybe she burns more calories now. Love how you fix her long hair so nice. ❤️
She did say mom and I completely agree she is so busy. Burning lots of calories
Freya is her own person. Precious cherub ❣️
My grandson doesn't have CDLS, but he does have another chromosome disorder that causes multiple physical and developmental issues. He got a g-tube at age 3, and honestly it's a godsend. So many reasons, some you mentioned - meds go through the tube and not by mouth and supplementing hydration being among them.
Yes! So many plus sides. I definitely see it differently now than I once did.
I just stumbled upon your video because of the RUclips algorithm, and at first, I thought your daughter had VACTERL Association, like me. But, Google is indicating that it is different. Those of us with VACTERL typically have limb differences, and my right arm looks similar to her left arm. We can also have GI issues and esophageal atresia. It's so strange how similar and yet different we are from each other. I hope she grows up feeling empowered and knowing how much she is loved.
Yes we thought Freya had vacterl when I was pregnant with her. A lot of the symptoms match up.
Is it my imagination or is she becoming more verbal....love that air vent❤❤❤❤ shes so adorable❤❤❤
She definitely is.
Freya is adorable! You are a great Mom, adore your positive outlook
Thank you so much!
I love her, she’s so sweet! Good job with the spoon Freya
I always feel so sad for the parent's. There is never an end to their worry.The biggest of those worries, what happens.when the parent's can no longer physically care. The poor souls who have no financial stability. I can't imagine the strain. I worked with children all form of disability 5 to 21 in a state school. Bused in every morning. 4 out of 10 father's left the mother to fair on her own. Those mothers looked 10-15 years older than the ones with partners. All so very sad.
Freya is so adorable❤ she is doing such a great job at feeding herself. Does she like the formula samples?
No 😬
@@Freyasluckyarm oh no ☹️. Too bad the brand she likes doesn’t have higher calorie options
Hi Marci please don’t take this the wrong way Please 😊 last year my daughter bought a cooling mat for our husky and I think she got it on Amazon but the dog loved it and kept him cool so I was thinking I wonder if it would work for Freya in her stroller the same way to keep her cool I don’t know it was just a thought..❤❤
Thanks for the tip! Our talking buttons are actually meant for dogs so I’m not offended if n the least bit
She is so smart on the signing mom but I can tell she's saying mom❤
I heard it to.clever girl Freya.x❤
Hi Marcie and your husband all your gorgeous kids and esp fraya ,it's ok I do follow Stephanie ,Giov& of course the adorable Sebastian who you guys know .would be great for you & fraya to meet Steph & Sebastian if it's possible those two kiddos are super cute and funny and smart .it's lovely to see how your doing to and see Freya how's she's doing ,learning ,health wise with her CDLS ..❤ love to you from England have the best weekend .
It would be amazing to see them together
Freya is Happy!!!!! Don’t Worry.Be Happy with her ❤
Freya is becoming more beautiful every time I watch your videos what a precious little girl Mira a
She is amazing
Freya is coming on so well. I’m on here with a new account I purchase a new tablet and couldn’t get back onto u tube with the previous account so this is a new one. I’ve been watching Freya and Sebastian from the beginning. I have a grandson who went through what little Freya is going through as I commented before about how lovely it is seeing a child feed themselves for the first time is so rewarding for the family. I’m remaining impartial of course but it was like watching my grandson doing the same again. I just had to explain, you must have wondered why I sounded overly happy for her. However thank you for understanding.
It is absolutely amazing.
Maybe for nutrition she needs fats like fish or krill oil. Cooked vegetables for getting potassium.
A hair analysis is great to do and you will know if there is lack of enzymes and a lot of other things. I do this every 6 months with the cat and once year for myself.
She is a true fighter!❤❤❤
Freya’s favorite air vent. 😁💕
Hi, Marci
Freya is always up to something. I love that little human being. She makes me either laugh or smile every time. Marci, I have a question about Freya and that can tab in her mouth. Can you explain to me what keeps her from swallowing it. I’ve been following and at first I freak out when I saw the tab in her mouth. I know that Freya is so busybody and she’s amazing. Thank you for explaining it to me. Love your family and I always appreciate your kind words. Hugs and love from Bradenton, Florida ❤😊🫶🏽
Freya is orally sensory seeking. Meaning she is using her mouth to physically sense things in her world. There’s nothing stopping her from swallowing it. But when doing this with non-food objects she has not yet swallowed something.
Thank you for sharing 🥰
Was sure I heard Mom❤!
And too cute I know her sensory cuz I've been watching you for almost 2 years over a year that she did look like a scuba diver😂
Have you ever heard of DuoCal. My son added this to his pediasure for added calories.
I will have to look into it. Someone also suggested benecalorie
3:51 min. that was funny Freya! 😂😂😂 Marcy is your hair color new? It looks realy good! Greetings from Germany ❤❤❤
Thank you it is fairly new. Maybe a month old?
Ice cream will put on the calories.
Hi sweetie ❤❤❤❤
Hello nan freya is so beautiful ❤ does she ever try to stand up on things?
She will pull herself up to chairs couches etc.
Hey there freya
Awe hope Freya starts gaining more weigh. She’s adorable.
💌
Hey Freya
❤❤prayers
Que Sera Sera. Freya will be fine. Love watching you. Is Jesse’s cough gone yet?
My favorite Doris day song. No 😩 we’ve messaged her doctor and will see what the next step is
Hi freya
Are you able to combine the two for taste ? Are you able to blend in something for taste ? Just asking, I don’t know 🤷🏽♀️
The whole issue is insurance. They won’t usually pay for both. We could try flavoring it ourselves but that is just extra work
@@Freyasluckyarm I totally understand ❤️
Does soya milk work for Freya ? I ask because I find it helps my appetite.
It just doesn’t have enough calories for freya
@@Freyasluckyarm I was thinking of using it just to stimulate appetite rather than as a replacement.
Xxx
Hi Freya your so silly hi Marci hope all is well?
Sounds like Freya is saying her ABC's & mom alot
She is becoming a lot more verbal these days
Can Freya walk or she’s not able to walk?
Not yet.
Good job take a bite for me 🎉🎉❤❤❤❤😂😂😂😂😮😮😮😮
My goodness, look how long her legs are getting!
But proportion wise at least she’s shorter than she is bigger. 😂
😂
@@Freyasluckyarm hey, gotta look for the positive 😉
I just love hearing and seeing you guys!! Also I've noticed that over half the people I follow here and on Instagram you're all from Utah. I guess I just love all y'all from Utah. 🫂🙏🏼🤍☺️
That is wild! Who else do you follow
Over half is definitely me exaggerating but sure seems like it. Off the top of my head I like to follow Tanner&Lauren Beeston, Sara and Derek Beeston, Sarah's brother Ryan and his partner who are both hilarious and from Utah as well. The Bingham family, Life in Holland, Jared and Britt, Tyson and Ashley Gardner and probably many more! All your guy's vlogs always make me want to come to Utah!😊😊❤
She's getting more active the more they do the more she'll lose a little weight most kids do but I'm sure she'll make up for it !
Yes she is so much more active.