EOE FPIES and a cashew allergy | First day of summer vacation
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- เผยแพร่เมื่อ 5 ก.ย. 2024
- Hi I’m Marci. Mom of 4 kids. The youngest is Freya. She has a rare syndrome called Cornelia deLange Syndrome. Come along on this wild life as we figure out disability parenting a child with medical complexities and a limb difference. All while having fun and enjoying life.
In this video I explain the difference between FPIES EOE and a cashew allergy. Freya is the lucky owner of all 3.
Freya is doing so well first crawling now standing it’s fantastic.
Freya is just too cute! She seems like the easiest sweetest child! Does she ever cry? She just lives and vibes and has such a sweet demeanor! ❤ her!
Oh she cries😂 she’s a typical toddler
I have seen the difference in freyas crawling and sitting up in the last few weeks ❤️ that’s awesome, you must feel so happy ❤️ if we can see a difference, you must really see it ❤️
She loves to know what makes things work she is very smart littl girl she is so much fun watching her discover things
Is it me or are Freya's blinks for yes becoming more deliberate? Glad to see all the kids having fun in the first days of summer. Enjoy the weather... summers are never long enough.
I think they definitely are
Freya is so bright! I’m a child development specialist concentrating on birth to age 3. I love watching her express her wishes, let you know exactly what she wants. Her experimenting with items and positions are wonderful!
Thanks for sharing.
She definitely will let us know what she wants
HI Marci, you got some super cute footage of all your kiddos today. You have some very nice kiddos. I didn't think I was confused about Freya's allergies until you mentioned the "pie" one. I just was not aware of it. I developed a food allergy in my early 50s. Apparently, I am allergic to flax seed. I ate some a few years back, went into anaphylactic shock, and was hospitalized for observation. No more flax seed for me! 😋 I went to college in my early 50s to become a medical assistant. Sadly, I get migraines and they got really bad. I was two classes away from granduating. I had to take an emergency medical leave from college. My migraines are still not under control. I have not been able to go back. Sorry, I didn't mean to write you a book! 😂 Thanks for sharing part of your day. ❤
I developed an allergic reaction to macadamia nuts last June, 2022. I broke out in itchy red hives and had to go to the ER for treatment.😭💔 My niece is allergic to all nuts and eggs. 2 nephews are allergic to peanuts. I'm allergic to dairy products.
The children look like they are having a very nice day.
Freya is doing amazing. The way she stands one day she will start walking.
Have a wonderful night.
What a beautiful little girl she’s smart as a whip. Take care all ❤
You have a beautiful family!
It's amazing how the 3 older children are such a blessing to help with Freya. I know you and your husband are so proud of all 4 of your children.
🙏❤️🙏
We are. Thank you
Freya is so sweet she is doing a lot of new things hugs
She is beautiful in every way. So glad you had a change of heart about her disability . You have four beautiful children.
Love them all especially Freda
She is just the cutest little girl and so smart! Oh, and thank you for showing us some of the ASL along the way. I am learning a lot!
Thank you so much for sharing. Freya is getting so much stronger. I can see it in her legs when she is “scooting”. She’ll be pulling herself up to stand soon. Maybe as Freya gets older some of the health issues will lessen. 😊
Freya is so cute standing. I love her crawling. She is such a smart little girl.
She is so adorable sitting up and crawling around everywhere. Great video I enjoyed it. See y'all in the next one❤😊❤
It is so difficult when you have to go through so much and you do really well with all of it. I think she is going to stand soon by herself, you can see her think about it before she scoots. She stops like she will put her foot down. Great to see. Freya has gotten so tall in just the few months I've been watching. ❣️🦋❣️🐻🥰
I had a friend say that too 😂 we will see.
Freya is so beautiful, and very smart! You are a special and great Mommy! 🤗🤗🤗🙏🏼🙏🏼🙏🏼🦄💕
All of your kids are so sweet! And some impressive standing action Miss Freya! You do a really good job explaining everything in layman’s terms. ❤❤
Thank you! She has always been a great stander when she wants to
Freya looked so relaxed by the water table 😊❤ love your family and video's! Thanks for sharing your video's. ❤
She loves water so much
@@Freyasluckyarm 😊 I can tell
Look at her Go! I've never noticed her lowered ears and wider neck but now that you've pointed them out I think they're too cute as well!! 😊❤😊 And go Liam!
They are so cute.
Freya is adorable and smart as a whip! I can see how quickly she learns and adapts.
I believe I’ve heard you reply to a comment on the soda cab tab Freya Carrie’s I’m her hand that you are confident as her mom, that she wouldn’t swallow it.
I’ve only browsed the comments, so I apologize if this has already been brought to your attention, but In this video, just after the Avi-q demonstration as you squat near the water table with Freya, she slips the soda can tab right into her mouth 😫😟.
Again, I respect that as her mom, you know her best, and she may not swallow something like this… purposefully. I feel better at least pointing out that the tab ended up in her mouth so you can maybe review the footage and check it out. I fear that she could slip, sneeze or cough and suddenly begin choking. 🙏🏼💜
I saw it. I’m not worried. She keeps it between her teeth and then takes it out.
That is a lot to remember about allergens. But the rash Freya had was so scary! I guess controlling what she eats is key. She is so sweet! I love how she teases you. She has a great personality.
It was so scary!
It looks like a great start to summer vacation, Marci! The kids all looked like they were having so much fun! That water table is really cool, I could see that Freya loved it. Thank you for explaining all of Freya’s allergies, and I’m glad they are under control. You’re such a great Mom, Marci! Sending you all my love and hugs, God bless you all 🤗🙏🏼❤️🥰
Thank you
@@Freyasluckyarm You’re so welcome ❤️💕
Love learning about cdls and watching your channel
Thank you so much!
thank you so much for sharing this information have a awesome summer ☀️ 😊
Looks like fun I love watching your channel
Thanks. We are so glad you are here
You're such a good mom, all your children are precious!
Thank you so much
This was so much fun to watch! My God is she progressing. Very determined little girl. Thanks for sharing
OMG! Is Freya standing on her own?!😱 Sweet!
Yes she can if highly motivated
@@Freyasluckyarm Good for her! She's doing great!!!
How clever you are, Marci: using that aquarium pump to keep the water pumping like that :-)
She is so cute ❤ Is really growing and aware of her environment ❤ Thank-You for sharing ❤
God bless you Marci. Thank God you were in Healthcare. You are the most patient Mom and so Smart. Freya loves her water fun. My Son did too when he was small. She’s doing so well standing up. Wonderful. Hi from NJ, see you tomorrow. ❤️💋🙋🏼💕💗
I’m going to Wind Creek in Pennsylvania today. It’s a Casino in an old Steel Mill. It’s supposed to be a beautiful day. I’ll let you know if I come home in a Limo.🤞🤞Have a super day. 🥰
Trying the 3rd time to comment, but without a link to public radio. Good allergy information from Theresa MacPhail who researches eosinophils, allergens, and the gut. The radio interview was on May 30, 2023. The information offered by Ms MacPhail could be useful to you and others here with food allergies. The subject to look for is ‘Why our allergies are getting worse and what to do about it.’ It appears that we may need to cut out processed foods and return to more fruits and vegetables. We probably already knew that, right? My best to Freya and your wonderful family.
Yes we try to do that in our diets here. We grow our own veggies and fruits. But Freya had a rough start at life and had the 2 worst things for her gut. C section birth and antibiotics after birth. Both life saving and necessary in her case.
Marci-thank you for the further explanation..it helped me understand about EOE better! ❤❤❤😊😊😊
You’re welcome.
GReat idea with the pump in the water table! Great is such a lovey. She loves the camera! I also like how she just pushes things away if she doesn't want them. Hope you all have a great summer holiday together.
😂 she definitely will tell us if she doesn’t want something
She really moves with the crawling!
Genius idea with water table!!
I saw it on Instagram! It’s genius!
Περαστικά σου γλυκιά μου Freya. Καλές διακοπες, Καλό Καλοκαιρι❤❤❤❤❤❤❤❤❤❤❤❤❤❤
Freya is a smart little girl. She'll be walking in no time.
Yes! I believe so too!!!
Todays video was very informative for me I learned some important information and I think you for that great video
Thank you
Freya has a great sense of humor ❤
She does. I love it.
Look at her go!!! She’s progressed so much. And her and that pop cap 😂 I think it’s so cute how she always seems to have one. Instead of a teddy bear or blanky, she likes her pop cap!
Her little face in the picture you shared after she had the allergic reaction 🥺. That’s so scary, I’m sorry you had to go through that - even with all the preparation in world, it just hits different when it’s your own child. I’m glad you have been able to manage it to the point of reintroducing foods!
Thank you. It was so scary.
I am just in love with your family especially Freya♥️ She is beautiful! She looks so much like her mama! Who by the way you are a beautiful wonderful Mama❤
I also watch Sebastian also. Love him too. Great mama too.
I have watched every video. I love to watch Freya is progressing so much❤
Love to you all.
Thank you so much! We love Sebastian too. Freya has been doing a lot of new things lately and it is so fun.
Beautiful video. Beautiful family. Blessings!!
I have NSGS non specific gluten intollerance. A LOOOONG road to diagnosis!
It can take so long! Luckily? My sister has celiac too so after a trip to the doctor and he suggested gluten intolerance I knew that is what it was
Just was texting that SHE IS SO ADORABLE😊
Thank you
Freya is so totally adorable, a real pretty princess. I just love seeing her and Sebastian. You other three children are amazing with her. William you are such a darling, you are so protective with your sister. You are just a beautiful family. ❤❤❤❤❤❤
Thank you. My kids are very good. Because they have grown with her they just instinctively know what to do
God bless you, you have a hard road, but also many blessings.
Thanks for the cute video. The info about the allergies was interesting
Thanks. It’s a lot of info to get through
You’re doing a great job with your videos😊
Thank you!
Great video, super informative, honest and sweet ❤
Medications shouldn't be left in a car. The extreme temperature changes can affect them. ❤❤❤❤
Whenever we go some place we take the bag in with us. It is only in the car at our house and the car is in the garage
Freya loves that water!!! So sweet!!! Thanks for the informing us on the allergies that Freya has!!!!🙏✨🔆🙏✨🔆🙏
She loves water.
She is adorable
Ruth here, it is hard to keep them as busy and interesting as in school.
You should get the pump for a fountain that’s what I do for my fountain
You are a good mother she does more than most children who has her defect sorry cant spell what she has
Cdls is a spectrum. There are kids that do a lot more than Freya does.
@@Freyasluckyarm that's awesome
My lil girl was born premature I worked in nursing I had to learn infant CPR before I brought her home because premature baby will forget to breathe well my baby stop breathing while I was feeding her I panicked thank God my oldest daughter learned CPR in school she grabbed the baby an went to work I ran next door to my sisters house all I could say is I can't see my baby die. I would have never thought I would react that way, be we never know how we will do until we go through it.
That is so scary!
Wow that really hit home when you said you would delete the photo if it showed her ears or neck. My son was born with a cleft palate (Pierre Robin Sequence) and when I would take photos of him one of the features that prs kids have is a recessed chin so whenever I would see a photo where his chin looked really pushed back I would delete it too because I didn’t want to see it 😢
💜
Fraya you are adorable 🥰
Girl
I love you
I love ❤
Your Chanel TH-cam
XX 💋 tanya
God picked just the right parents to trust his sweet Freya with
I carry an epi pen and wish mine talked because if someone has to use it on me, and unless I have trained them on how to use it, they have to take time to read the instructions. Greatfully I have not had to use it since I got it. (Knock on wood😂)
I am sooo excited summer is here! I hope you alls summer is a safe and fun one! Do your older Children have any summer wishes this year?🙂💜🤟🏻
I hope you never have to use it! Just a lot of swimming.
Never met a kiddo that didn't love water play.
Freya looks really flushed today. Is that from being outside.
Still quite red in clips in her room.
Such a cutey.
Yes. She gets overheated very quickly. That is why we came insode
I have the vomiting and diarrhea reaction to acetaminophen and the entire class of nsaids.... including asprin with the exception of pepto bismal. For reasons I don't understand (or really want to try to wrap my mind around why it works) but pepto bismal and the many generics of it do help with lowering fevers.
Interesting. I didn’t know that
Hi Marci- Is there-a summer camp of some kind Freya can attend? I guess not as you haven't spoken to it. 🙂
None that I know of. We live in a small town.
somebody needs to star a summer program's for special needs kids!🥰
She worked out how to slide pretty quickly xxx
It must have been hard to diagnose the delayed reaction of the 3rd allergy, how did you work that one out, particularly when both girls were allergic to different foods?
I mentioned it to our amazing GI doctor and he knew right away. He is amazing
I'm so glad to see you here, Biddie! I always see you on Beckham's (Rachel lol) channel and you seem so caring and respectful in the comments. I just wanted to say I appreciate it!!
I wish I could, I just get frustrated with some of things Rachel says and does 😅 and feel like I need to call it out sometimes... it's out of love and safety for the (random stranger) kids, but maybe I'm just older than her and I get annoyed easily LMAO!
I was born in 1981, I don't feel THAT old and I think my frustration is partially generational, because I usually don't give two hoots what people are doing with their lives, internet or not!!
Anyway thank you! Hahah! Random rant, side story, vent😅
@@CrystalCat24 thanks! That's a sweet thing to say. I try to be! It can be frustrating/worrying sometimes!
Please share some gluten free recipes!!! I would love that.
Anything from gluten free on a shoe string is amazing. She has a website with all her recipies
🙏❤️🙏
Can do a bedtime routine
We have one. I believe it is called nighttime routine
This was a painful video to watch with the sun glaring in everyones eyes.