Neurology visit for epilepsy
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- เผยแพร่เมื่อ 17 ก.ย. 2024
- In this video we finally see Freya’s neurologist to talk about her epilepsy diagnosis.
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.
Developmental delay.....yes...but she knows exactly what's going on, can play , can eat, knows her people, learns sign language, is soo happy and will walk in a couple of month or a year! Greetings from Germany ❤ and I forgot ....she is super cute!
Liam is a great traveling companion. He has a very calming presence❤
He definitely does. I love when he can come with.
You have the most handsome young man as your companion today what a lucky mom you are!
I am super lucky
Liam‼️‼️ My hero.
I love Freya's hair, she soooooo linda¡¡¡¡love from the Dominican Republic.
I agree. Freya was so fast on her bottom today. It’s always great to see her and how all her siblings interact with her, even the dog. Your home always seems like a happy place. Thank you for allowing us in. Hugs and lots of love from Bradenton Florida.❤😊
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Sounds like you found the perfect neurologist for Freya and your family!! When you can walk out with a smile and feel that Freya is getting what she needs, what a good combination. Liam, your note taking skills will never let you down😉 ! I'm so glad that all went well! 💕💕🙏🙏
He is such a big help. I love when he comes with me
Glad that Freya is doing well. Your family is so wonderful. You are such an awesome mom.❤
I'm glad Freya's appointment went well. I cracked up when she bopper her head with the empty bottle! She's so funny! Liam is a great helper. He's very calm but present.
We thought it was hilarious. 😂
Thank you Marci for the update. It’s it fantastic to see her progress.
Liam is going to make a wonderful husband and dad one day. Glad you got answers and support. ❤❤❤
I think so too!
Freya has come so far since I discovered your channel Marci, I know it's baby steps but I can still see them so clearly. She is so independent when you suggest she does something, that little raising of her head and off she goes to do her own thing 🤣🤣 she's like a miniature teenager. So happy the visit with the neurologist went well. Love your blouse btw. God bless.
She is a miniature teen after. I love that analogy.
I can’t get enough of Freya scooting across the floor. It’s like out of my way or else. ❤
She is so quick!
I love watching her scoot across the floor I just laugh she makes me smile and makes me happy I love Miss Freya
So glad to hear Freya is alright. Love the way she scoots across the floor with her arms just a going. Im so proud of her biting that pretzel and chewing. She is one amazing child. Liam is great helping little sister. Jesse was funny eating chips with Freya. Fiona was cute hugging Freya. I love your family. Oh yeah the bottle bonking on the head, i giggled too.❤❤❤
Good morning my Friends, this video made me happy because you had close up of Freya on your lap. She is the most precious Angel. Liam looks like he could be a Teacher or a Dr. In adulthood. God bless . I love Leopard too. Beauty Salon today and Lunch with my girlfriend. Thanks for inviting us along today. I’m glad the Jessie is feeling better. Have a great weekend my friends. See you tomorrow. Love you, me ❤️💔💋😉🧑🏼💻
Thank you for sharing the updates with us on Freya’s neurology appointment! 🙏🙏
Thanks for sharing. All of your children are such delightful sweet beings!
Im glad to see she loves to scoot on her bum around the house or to places she can get to easily with her siblings or her parents depending on where you are at in ur house.
Im praying she will walk before she is 8, but she will do it on her own time or when Freya is developmentally ready! I enjoy & learn lots from your videos.
God bless ur family always.
My family is GF as well. Still learning stuff about all kinds of food & what we all can eat safely. So we all feel fine each day!
GF is a whole new world for sure
I just got that same air fryer and I love mine. Great video as always Marcy. Great to hear your appointment went well.
Awesome! Thank you! I know we will love the air fryer
Hey again I missed the neurology epilepsy video I can't imagine how it feels seeing or Freya having to go threw seizures and not sleeping ,must be alot and horrible . Thankfully you were given medication for that. Very stressful ,& though and scarey and slit to take in . Good Liam went with you ,he seems calming ,and listens when it's hard to take things in ..he does look so much like his dad handsome young man .😊 Take care guys
I love when he comes to appointments with me
Howdy Marci....thanks for update on Freya. Hopefully this new medication will help. I also loved all the kiddos together. It makes me remember my sisters and brother. There were 3 of us gals and one boy. Sadly, al are gone except my sister and I. It really seems like Freya is doing something new all the time! I love it, but heck that lil cutie could just sit in front of the camera and I would still wwatch! Much love to all! ❤❤❤❤❤❤😃😃😃😃😃😃
I just love watching Freya! She’s so darned cute!!! ❤
Your a good mom❤❤
Oh the ma, ma ma just melts my momma heart ❤!😊
I love when she says it
She’s very clever and I hope she keeps this up❤
Hope Liam's test went well.
Lovely video and I am thankful that Freya's appointment was helpful
Happy the appointment went well. Just a strange head's up...Those ripped knee jeans like Freya's wearing, never wear anywhere near sparks/fire. My then 5 yr old was wearing jeans like that when we had a fire pit, toasting marshmallows. A spark flew and hit the threads across his knee, lighting up the whole knee in seconds. It was so fast. He needed a skin graft for a 3rd degree burn at Shriner's Hospital, and they told us because the threads catch so quickly, they see similar incidents more then we'd think. I just always have to share with other parents because I never would have thought about it. My kids always wore ripped jeans.
Wow! That is so scary. Thanks for the heads up
@@Freyasluckyarm It sounds so silly because everyone wears ripped jeans, but seeing it, how fast it happened with one spark, I'm still traumatized. My son is now 16 and his knee is forever scarred.
Silly Liam! Makes me smile.
Love to hang out with you all.
Freya's such a smarty-pants...smelling the yogurt melt before eating it cracked me up!
I didn’t notice. How cute!
Thanks for the update on Freya 😊!! Great video 👍😊 great early Christmas gift I love it 😊!! Love watching your family videos ❤️ it was so funny when Freya bumped her head with the empty water bottle 😊!! HAVE A BLESS DAY TO YOU ALL ❤️🙏❤️🙏❤️🙏❤️🙏😊😊!!!!
Cool to see you BIG Bro Liam hanging with Mom and Freya🙂And I'm so glad the appt went well. Frey Frey knows she gives the best smiles for Daddy 💕And when Frey put her head down at he the 15:54 mark I was admiring her beautiful hair color with her big girl hairstyle🌷
That’s some pretty fast scooting little Miss Freya!
She is so quick these days
Awe Freya looks soo cute on her jeans and her hair up looking like a little young lady 💜glad she is doing great all of you too 🤲
Feel Better Soon Freya And Pain Go Away 🙏🙏💪💪🙏💪🙏💪🙏💪🙏💪🙏💪🙏💪🙏💪🙏😊😊😊😊😊😊😊❤❤❤❤❤❤❤❤❤❤❤❤
You and your family always puts a smile on my face. Marci you really are looking so attractive..more to do with how great ur skin looks. I wld never think you have such a full busy life..4 kids..one who is so unique n love love her name for her arm. Freya lucky arm. So perfect. But Freya is not ur only child who is unique. Personally..i adore ur Liam. He is his own person..goes to the beat of his own drum. Intelligent..just a pleasure. The same is true about your 2 daughters so Marci this shows me how good of a mom u are. I bet that you really got to know the depth of who you are since having Freya.you shld feel good about who you are and how you deal with all ur obstacles head on. I admire you. I much older. Im 65 and im learning from you. Funny but true. Your amasing.
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Not being able to sleep is annoying. I know everything about it. Poor Freya. You gave her melatonin, right? I sometimes take that too. Does help. But I need something heavier. So I have Oxazepam for emergencies. That helps to stop my train of thought that I can get some rest and sleep. I just hope Freya can get some sleep. And I have to say. I think Freya's hair looks really beautiful in this video
Yes she gets melatonin. That definitely helps her fall asleep, but not stay asleep
@@Freyasluckyarmhas Freya been tested for sleep apnea?
@@andreacarlile-thompson2511 she hasn’t but doesn’t show any signs of it
Kids are so funnt. Everything gets popped into the mouth without skipping a beat but food😅. Glad the appointment went well.
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❤❤❤❤❤I LOVE YOU PRINCESS FREYAAA ❤️💝
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Happy Baby Organic Creamies is also a freeze dried fruit and veggie purree made with coconut milk that might be worth looking into. My kiddos love the yogi bites from that brand and my daughter will eat the creamies as well.
lookin fly Marci!!
Thank you
Just catching up on all my Freya videos!! I feel like she is doing more and more new things! At least for us viewed since we don’t see what every single day looks like.
Since being on the seizure medication, have you been noticing she has been growing more developmentally with it now under control??
She has been doing amazing things. I feel like it started 6 months ago so before the seizures. It has just continued since then
Seizures are common in the autism community, but not everyone diagnosed autistic has seizures. All I know seizures are more common in autistic people.
My daughter was a 'butt scooter'. She never crawled. Now they consider that a developmental issue. They did not get concerned about skipping crawling back then. I have a grand-niece who had physio for crawling when she was not crawling. I know totally different with CdLS, probably.
Freya can crawl on all 4s and does occasionally but bum scooting is her favorite mode of transportation.
And their she go no stopping her
Poor Freia can i pray for Freia
Ohhhhh I LOVE COSTCO!!
Me too!
I have had my mixer for over 20 years and it is starting to go as well
They are so greta
There was a US recall on the juice packs for kids. Thought I’d let you know. Don’t if they are the same ones you use.
Hi Marci did Freya ever get covid or the vaccination just wondering with her epilepsy.
She had Covid in the summer of 2020
😊❤xxxxxx
Do u still have the mixer
What mixer?
Do kids with Cdls get more exhausted. Does Freya sleep more than ur other kids. Freya seems to have alot of energy but im only seeing 20 mins of ur day.
Nope I’d say she requires less sleep than my other kids 😂
It looks like she signed and did a circle on her tummy. I can't remember what that means. I baby sat for a little girl ND I used to know what that sign was. Now I'm old and don't remember.
It is please.
Oh yeah, how could I forget that one, lol old age and not using it in a long time. I’m so impressed with her development. She is definitely a toddler, but a happy toddler thanks to you, your husband and those kids who love her to pieces. What a great family to follow.
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Freya is so stinkin' cute! I know how difficult it must be to see the worth in your child and know the value of her life which is "a price far above rubies" (I know it refers to wives but I think it's appropriate here). Yet, you're in a constant battle just to make people "see" her and her strength. It should come naturally from human beings. 🩵