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.
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. ❤
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!
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!
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.💜
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!
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!
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. ❤
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 just stumbled upon your video because of the RU-vid 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.
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. ❤❤❤❤❤
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. 😊
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.
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!♥️♥️
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. 😂😂😂❤❤❤
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!
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.
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. ❤️
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..❤❤
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 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.
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!😊😊❤
