FiFi and Freya's hair! Yours is gorgeous, too! I have been caring for my sister w/dementia and have not seen you guys in a while! She's 20years older than me and her twin died from it. I was her hospice caregiver. Now I'm in Florida all the time with her and her husband. It's the best thing I've done with my life but oh, I've missed you all. ❤
Great appointment! Fiona is such a great sister. I love how all the kids interact with Freya. You can see how much she loves them. I hope her seizures are under control. It's so scary, and really affects everyone in the house. Much love! ❤
Loving the hair styles ladies! I have to admit it took a bit for me to get used to Freya’s short hair but she is so adorable with it short too 🥰 I think I like it better short it suits her so much! I’m glad her appointment went well. I love how she explores the toys in the store also.
I'm so glad this, Dr. understands what is going on and not afraid to ask you questions. Freya is so adorable. I love her shirt and yours. Fiona is such a great helper. I'm glad she went with you. Love you ❤❤❤❤❤
You three ladies looked sooo pretty today! ( : I am also happy that the neurological doctor was so interested in Cornelia de lange syndrome and corresponding seizure activity! That was so rewarding to hear he could relate to all you go through and was understanding about no more extra unnecessary testing! ( : what a banner appointment! Can't wait to see what pies you guys are making! Please tell Fiona her hair looked so pretty today! Love you guys! ( : ❤️❤️❤️❤️😍😍😍😍🤗🤗🤗🤗🥰🥰🥰🥰
Great news about her appointment...she's getting so big now...Miss Fiona is a fabulous big Sister and how.lucky Freya is to have her... Your a very.patient and.loving Mother...# Love your hair style it's beautiful ❤❤❤❤❤
I’m so glad you have a good neurologist and that he so interested in Freya’s syndrome. It’s wonderful that you include jour other children in these appointments. Fiona is such a kind and loving big sister. I saw that you had a live recently and was sad that I missed it. Now I can’t seem to find it so I can at least watch it. 🥴
@ yup, age 8 to age 31. I see her in April to go over results and what I learned from my Right heart cath few years ago, cath equipment can’t fit in my right and left neck arteries, was on ecmo after birth for 6 days. So this explains my seizure times.
Told this to my dad he understood and eeg tech doctor guy that did my test in August he understood and agreed best to stay on my med. As I begin adult life more living on my own.
She takes them off anytime I put them on. She always starts the day with them on but especially when we are out and about I don’t put them back on because we loose so many socks and shoes
good you got a doctor who wants to know more! that is interesting there's a range. does she have regular seizures as part of her syndrome or just an extra thing? I know at that age my tests were abnormal not from seizures but just rewiring in the brain. oooo pies! yum!
FiFi and Freya's hair! Yours is gorgeous, too! I have been caring for my sister w/dementia and have not seen you guys in a while! She's 20years older than me and her twin died from it. I was her hospice caregiver. Now I'm in Florida all the time with her and her husband. It's the best thing I've done with my life but oh, I've missed you all. ❤
Great appointment! Fiona is such a great sister. I love how all the kids interact with Freya. You can see how much she loves them. I hope her seizures are under control. It's so scary, and really affects everyone in the house. Much love! ❤
Loving the hair styles ladies! I have to admit it took a bit for me to get used to Freya’s short hair but she is so adorable with it short too 🥰 I think I like it better short it suits her so much! I’m glad her appointment went well. I love how she explores the toys in the store also.
We are really liking it.
What an excellent appointment and such a good outcome. Lovely update, thank you very much ❤
Your neurologist sounds fantastic. Glad the appointment went well.
So glad the appointment went well, with no further problems. Love the tee shirts, so cute. Happy Thanksgiving to you and your family.
I’m always glad to not get a new diagnosis 😂
I'm so glad this, Dr. understands what is going on and not afraid to ask you questions. Freya is so adorable. I love her shirt and yours. Fiona is such a great helper. I'm glad she went with you. Love you ❤❤❤❤❤
She is precious
You three ladies looked sooo pretty today! ( : I am also happy that the neurological doctor was so interested in Cornelia de lange syndrome and corresponding seizure activity! That was so rewarding to hear he could relate to all you go through and was understanding about no more extra unnecessary testing! ( : what a banner appointment! Can't wait to see what pies you guys are making! Please tell Fiona her hair looked so pretty today! Love you guys! ( : ❤️❤️❤️❤️😍😍😍😍🤗🤗🤗🤗🥰🥰🥰🥰
Yes! Very good appointment overall
She is just so DARN cute!!! I can’t take it!!!!
Great news about her appointment...she's getting so big now...Miss Fiona is a fabulous big Sister and how.lucky Freya is to have her...
Your a very.patient and.loving Mother...# Love your hair style it's beautiful ❤❤❤❤❤
Fiona is an amazing older sister.
Marcie you are always so cheerful and happy and that's great thing
I try
I love how Fiona and both other siblings play with Freya.
Hope you all had a great Christmas and New Year, Freya is looking as cute as ever!
What an awesome mother.
Thank you
Your kids are so good. It’s such a great idea to bring one of your kids with you to help and to entertain ❤❤❤❤
It is a life saver. And they think it’s amazing and so does freya
Haven’t checked in a while! She has become even prettier! Looking fantastic!
Such a happy little girl she must give you so much pleasure , she is gorgeous , your other daughter is gorgeous as well .😍💖🤩
My nephew was born with Cornelia de Lange Syndrome 💙 I pray you get all the help and support available xx
Thank you so much. So nice to meet a CdLS family
Everyone looks great. I love Fiona’s curled hair. ❤
I’m so glad you have a good neurologist and that he so interested in Freya’s syndrome. It’s wonderful that you include jour other children in these appointments. Fiona is such a kind and loving big sister.
I saw that you had a live recently and was sad that I missed it. Now I can’t seem to find it so I can at least watch it. 🥴
It should show up as a regular video now. I think it was called Thanksgiving traditiona
@ Thank you.
Sweet Freya!! Hugs from Eileen ❤
So glad the visit went well. It would be interesting if the Dr decides to do research. How is Jessie?
Such good news! I love following you!!
Georgia
Thank you
She’s looking so much like you. ❤
Good afternoon hope your trip goes well God bless you and your family 🙏❤️🙏❤️🙏
4:25 your girls are gorgeous.
I like the different hair dos
Thank you
Cute Santa bib and t-shirts on you both
Good visit ❤❤
That's good about the appointment Marci , may I ask how many mis keppra Freya is on now. My daughter is 4 morning and 4 night.
She was on 1.5 ml now he increased her to 2
Beautiful little mite I love her hair cut
Thanks we do too
Freya's vocalizations seem much more conversational over the past couple of months or so, with more fluidity and more variation in pitch...
Yes! I agree. She “tells us stories” all the time.
Some Chickfil-a locations have the gluten free buns, but I wish they were available at all locations all the time though.
I never think to ask. I just get the grilled nuggets.
Hi My name is Kathy and I like watching special kids.
Hi marci hope the appointment went well
Yeah, my brain wave test 2002 to 2024, so very long time. Doc noticed it so asked while her idea graduate me off Keppra.
Oh that is a very long time!
@ yup, age 8 to age 31. I see her in April to go over results and what I learned from my Right heart cath few years ago, cath equipment can’t fit in my right and left neck arteries, was on ecmo after birth for 6 days. So this explains my seizure times.
Told this to my dad he understood and eeg tech doctor guy that did my test in August he understood and agreed best to stay on my med. As I begin adult life more living on my own.
god bless so much
Love ya all!
❤❤❤❤
I was just wondering how come freya doesn't wear socks and shoes ?
She takes them off anytime I put them on. She always starts the day with them on but especially when we are out and about I don’t put them back on because we loose so many socks and shoes
@Freyasluckyarm I don't blame you it would get expensive to replace them
@ exactly and she is so sneaky about it. I never notice until it’s too late
She’s cute 😆
🥰🤗
Love you Freya
Hope you had a great day
Happy thanksgiving 🦃
sory sory if i ask should Freiya be a good candidate to have gene therapy sory sory if i ask happy saturday
There is no gene therapy for cdls
You look very attractive today.
happy thanks giving
Same to you!
@Freyasluckyarm thank u
So cute seeing her smiles and happy ❤️
💌
Morning/afternoon
good you got a doctor who wants to know more! that is interesting there's a range. does she have regular seizures as part of her syndrome or just an extra thing? I know at that age my tests were abnormal not from seizures but just rewiring in the brain. oooo pies! yum!
About 15% of people with cdls have seizures.
Miss Fiona's growing up fast. She's very pretty like her Mom and always so happy and helpful.
She is amazing.
Yummy what kind of pies
Sweet potato pumpkin cheesecake Apple chocolate cream key lime and mint chocolate chip
Yum those sound really good
Hi Freya
Poor thing.
❤❤❤❤