Gosh, I love your videos! So down to earth with no filters. Such a real family with all the bumps in the road and no pretenses. ❤ MOST OF ALL, Freya's dimples make my heart melt. 🥰
Freya is such a happy little girl and she loved feeding her mom. She will look adorable in her Yoda costume. It sounds like her doctor is very good and tring to do his best for Freya and he listens to you which is not always the case. Get some extra naps in tis weekend! ❤️🇨🇦🙏
I hope her seizures get to be less and less as time goes on bless her heart. She is so darn precious ❤I’m glad we got to see the other kiddos too! Hope you all enjoy their fall break.
It sounds like she's doing ok. She learns things in her own way so she is moving forward even if it's just little bits at at time. She is sooo cute I just love her little cheeks and her smile. 🥰
Love that beautiful girl. Actually your whole family is special to me. I had a friend in Elementary school that would stare into space and wet herself and they called it seizures. Thank you for taking us along. 😊 #fanforlife❤
I just love watching Freya she is beautiful. I really appreciate you sharing your family with us I really enjoy it and I am so thankful for the information that I learn about CDLS
Freya is progressing so well with her communication. I'm so sorry what happened to your mom. You just never no what life has in store ..imp to be proactive. Hope you guys had a great day today and always.
The spacing out seizures are what my son had for 6 months. He would collapse if standing so it was very noticeable. I hope you get all answers and Freya has great results with the medications.
I’m glad you had a good appointment, Marci! I just love Freya’s smile. Sending you all my love and hugs, God bless you all! Have a great weekend! 🤗❤️🙏🏻🥰
Try to get some videos of her spacing out. It will be a benefit in her diagnosis. It’s one of the great benefits of our I phones. I enjoy your videos and your beautiful family.
My daughter was going to do growth hormones when she was eight, they checked her growth plates at children's hospital of Pittsburgh we found out they all fused together. She is now 29 and she is 4'8 70lbs she wears a size 1 in shoes and I alter all her clothes. I love making outfits for her
Hi my friends, loved your and Freyas smiling faces this video. Very informative too. I hope you all enjoy your time off of school. See you soon, have fun. Love from me, 💋❤️🙋🏼💗🤦🏼
I had 1 focal seizure, age 6 about a hour after getting home from school “ first time riding bike home from school”, watched rugrats, heard mom calling to get ready for dinner but I didn’t respond or get up, my oxygen cannula was off so put that on and think ER trip like all the other times.
I think what you were referring to are called absence or petit mal seizures. It's so good that the doctor is happy Freya's progress. I know you said the doctor was happy to give her vaccines now but I'm glad you said to wait. I know you do a lot of research but might I be so bold as to suggest that Freya should get her vaccines one at a time with a month between them so her body does not have to cope with all the heavy metal at once, it's a much gentler way of doing it. God bless.
Hi Marcy in the video that you mentioned about talking to the dr. about getting Freya wheelchair. Did you see where a suggested a wheelchair that I think could be a good possibility. Great video as always. They fit the wheelchair to the individual it’s pretty amazing the technology that is available. I just got a brand new wheelchair yesterday as a maker of fact.
I have Turner Syndrome too. I was on the growth hormone while it was experimental in the 80s!!! I used to grow 1 inch a year. Once in growth hormone, I grew 4 inches a year!!! Definitely worth it if you ask me. Maybe your dr now could consult over the phone with the out of state endocrinologist.
Please don't confuse the terms average and normal. With growth charts for any child in any category, "normal" is anything between 0% and 100%, with 50% being "average". A child/person would only considered "abnormal" in height or weight if they drop below the 0% or go over 100% of "normal", not average. Freya at 36% puts her slightly taller than 1/3 of her peers. Some of my family grew in spurts also. For example, I wore size 6X dresses entering 7th grade, but was a girl size 14 by the end of the school year. My 6 lb preemie son only weighed 11 pounds at 10 months, but was 22 lbs on his 1st birthday. He went from wearing size 12-18 months to Size 4T. Then he didn't grow or gain weight between 4 & 5 yrs old. They ran a whole slew if tests, by the time they had organized all the results into a plan, he jumped back up to 47%!! His growth varied between -22% to 105% throughout his growing years. As an adult, (with no medical intervention) he is now 6'3"!! One of my daughters stayed between 45-52% her whole life. My neighbor's daughter topped off at 5' 14" at age 15. (she refused to be over 6') Her driver's license today still says she's 5'14"! 😂 Hope you all had a marvelous weekend & even got in an extra nap or two. 🌞 😴 Thanks for sharing your family with us. 🌻💖🌻 Especially becoming aware of and learning more about CDLS. 💜
Yes cdls is a whole spectrum. I would say Freya is close to the middle? As far as cognition and closer to the more moderate severe side as far as physical ability.
So glad you embrace vaccines. My husband is a doctor and we do have a population of (have to be careful here) …religious…people who share anti-vax “doctrines” that we consider (going to be careful here again)…unfortunate”.
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I love to see how Freya transfers items quickly from one hand to her lucky hand. 😊
Me too!! She has always been so good at it
I too love her smile, & the fact that she's thriving. You go girl!!!😍🥰❤
Gosh, I love your videos! So down to earth with no filters. Such a real family with all the bumps in the road and no pretenses. ❤ MOST OF ALL, Freya's dimples make my heart melt. 🥰
Thank you so much! I love the dimples
Go Freya! And go Mom! It's not an accident that you and your family were given to each other! 😘💕💕
Freya is the most adorable little girl, ..she has the prettiest smile...❤
The bandaid on her little thigh❣️so sweet
I love Freya feeding you. I'm so glad she showed the doctor what she can do. I'm glad to hear she is doing so well. Love you guys. ❤❤❤❤
Freya is such a happy little girl and she loved feeding her mom. She will look adorable in her Yoda costume. It sounds like her doctor is very good and tring to do his best for Freya and he listens to you which is not always the case. Get some extra naps in tis weekend! ❤️🇨🇦🙏
She's just adorable, icould watch her all day xx❤❤❤
She has the prettiest smile, looking so happy 🥰
Like all the others, I loved seeing Freya feeding you, PRECIOUS!💗 I so enjoy seeing you and your precious family do life, you guys are AMAZING!
That was new! She had never done it before
I hope her seizures get to be less and less as time goes on bless her heart. She is so darn precious ❤I’m glad we got to see the other kiddos too! Hope you all enjoy their fall break.
Freya is so precious, thanks for sharing her with your channel!
Freya would get a kick out of those sit-and-scoot ride on toys!
It sounds like she's doing ok. She learns things in her own way so she is moving forward even if it's just little bits at at time. She is sooo cute I just love her little cheeks and her smile. 🥰
Love that beautiful girl. Actually your whole family is special to me. I had a friend in Elementary school that would stare into space and wet herself and they called it seizures. Thank you for taking us along. 😊 #fanforlife❤
You’re the coolest and best Mom ever! ❤
That is great Freya had such a good Dr appointment. She is such a cutie.
I don’t know that is a good question.
Love Freyas costume!! Shes adorable ....all the kids are adorable. ❤❤❤❤Thank u for sharing😊
I love her smile it makes me smile❤❤❤
I just love watching Freya she is beautiful. I really appreciate you sharing your family with us I really enjoy it and I am so thankful for the information that I learn about CDLS
Freya is progressing so well with her communication. I'm so sorry what happened to your mom. You just never no what life has in store ..imp to be proactive. Hope you guys had a great day today and always.
She is such an adorable little girl.. my love to her and her family.. you all do an amazing job with her.❤❤❤❤
Love seeing Freya smile!!❤
She is such a beauty❤❤❤❤
The spacing out seizures are what my son had for 6 months. He would collapse if standing so it was very noticeable. I hope you get all answers and Freya has great results with the medications.
Are they absence seizures?
Yes a sense or focal seizure.
Love that smile 😊😊😊
I’m glad you had a good appointment, Marci! I just love Freya’s smile. Sending you all my love and hugs, God bless you all! Have a great weekend! 🤗❤️🙏🏻🥰
Try to get some videos of her spacing out. It will be a benefit in her diagnosis. It’s one of the great benefits of our I phones. I enjoy your videos and your beautiful family.
Freya is adorable! ❤
My daughter was going to do growth hormones when she was eight, they checked her growth plates at children's hospital of Pittsburgh we found out they all fused together. She is now 29 and she is 4'8 70lbs she wears a size 1 in shoes and I alter all her clothes. I love making outfits for her
You both are so cute love it!!!! Freya is getting so big your the best momma❤❤
I’m glad for you that all went well for Freya at the specialist appointment. 👍 Stress free you both now I hope.
Beautiful Freya😊 great job keeping her thriving ❤
Freya is so adorable! Thanks for sharing about her check up. I'm curious to see what wheelchair she gets.
Us too!
I'm ao glad the appointment went well..I just knew it would ❤!
Great video 👍😊💕 thanks for the update 😊 HAVE A BLESS DAY TO YOU And YOUR FAMILY ❤️🙏❤️🙏❤️🙏❤️!!!!!
Hi my friends, loved your and Freyas smiling faces this video. Very informative too. I hope you all enjoy your time off of school. See you soon, have fun. Love from me, 💋❤️🙋🏼💗🤦🏼
My daughter had the Dearing seizures. Back in the day they were called mini-mal seizures. She was always really tired after a seizure.
Sounds like an overall good appointment.
So adorable! Luv field trips!
I had 1 focal seizure, age 6 about a hour after getting home from school “ first time riding bike home from school”, watched rugrats, heard mom calling to get ready for dinner but I didn’t respond or get up, my oxygen cannula was off so put that on and think ER trip like all the other times.
I think what you were referring to are called absence or petit mal seizures. It's so good that the doctor is happy Freya's progress. I know you said the doctor was happy to give her vaccines now but I'm glad you said to wait. I know you do a lot of research but might I be so bold as to suggest that Freya should get her vaccines one at a time with a month between them so her body does not have to cope with all the heavy metal at once, it's a much gentler way of doing it. God bless.
Yes absence seizures thank you!
Hi Marcy in the video that you mentioned about talking to the dr. about getting Freya wheelchair. Did you see where a suggested a wheelchair that I think could be a good possibility. Great video as always. They fit the wheelchair to the individual it’s pretty amazing the technology that is available. I just got a brand new wheelchair yesterday as a maker of fact.
You did awesome Freya
I have Turner Syndrome too. I was on the growth hormone while it was experimental in the 80s!!! I used to grow 1 inch a year. Once in growth hormone, I grew 4 inches a year!!! Definitely worth it if you ask me. Maybe your dr now could consult over the phone with the out of state endocrinologist.
That is a good suggestion. I will have to see if it’s an option. Wow! 4 inches is amazing
I😊9
She must have the strongest legs of any four year old after pulling herself around for so long.
Please don't confuse the terms average and normal.
With growth charts for any child in any category, "normal" is anything between 0% and 100%, with 50% being "average".
A child/person would only considered "abnormal" in height or weight if they drop below the 0% or go over 100% of "normal", not average.
Freya at 36% puts her slightly taller than 1/3 of her peers.
Some of my family grew in spurts also.
For example, I wore size 6X dresses entering 7th grade, but was a girl size 14 by the end of the school year.
My 6 lb preemie son only weighed 11 pounds at 10 months, but was 22 lbs on his 1st birthday. He went from wearing size 12-18 months to Size 4T. Then he didn't grow or gain weight between 4 & 5 yrs old. They ran a whole slew if tests, by the time they had organized all the results into a plan, he jumped back up to 47%!! His growth varied between -22% to 105% throughout his growing years. As an adult, (with no medical intervention) he is now 6'3"!!
One of my daughters stayed between 45-52% her whole life.
My neighbor's daughter topped off at 5' 14" at age 15. (she refused to be over 6') Her driver's license today still says she's 5'14"! 😂
Hope you all had a marvelous weekend & even got in an extra nap or two. 🌞 😴
Thanks for sharing your family with us. 🌻💖🌻 Especially becoming aware of and learning more about CDLS. 💜
Amo la sonrisa de freya ❤😊
Hi Marci your channel is very informitive for people that want to learn about Freya's condition
Thank you so much!
Can’t wait to see her in the Yoda costume
I know me too. We haven’t tried it on yet
Freya seems much more alert than sebastian. Are there spectrums?
Yes cdls is a whole spectrum. I would say Freya is close to the middle? As far as cognition and closer to the more moderate severe side as far as physical ability.
Do you think any of these other doctors would do a tele-visit so you can do a consult from home?
For mobility, couldn't she use some kind of platform on wheels since she is go good at propelling herself with her feet.
We have one that she doesn’t use often and it also is not good for long distances.
I love Costco samples
That's is sooooo true
😊❤
❤
Have you chatted with Stephanie George lately and how is freya
those seizures r called absent seizures
❤❤❤❤❤😊
So glad you embrace vaccines. My husband is a doctor and we do have a population of (have to be careful here) …religious…people who share anti-vax “doctrines” that we consider (going to be careful here again)…unfortunate”.
❤❤❤❤❤😊xxxxxx
Absent seizure ???? That's what my grandson has he's 5 but yes its like staring off in space just for seconds but he's easily redirected ........
Yes thank you