Have the medical community tested Sebastian’s brain waves during certain activities? It would be so interesting to know how his brain functions. Love to y’all💕
@stephaniegeorge
Жыл бұрын
They have! 💕🙌🏼 They describe it as sometimes the brain waves are straight lines, which means he’s processing things clearly and other times (more times then not) his brain waves are kind of “zig-zaggy” and that’s when the disordered parts of his brain are taking over and things aren’t as clear. But it sure seems as he gets older he totally understands more. 💕
@lifeofamomadventures771
Жыл бұрын
Hi 👋 Stephanie, Gio, Sebastian Nala and Zeus. I see Sebastian is getting taller, more responsive. I love his side eye and direct eye contact. His little giggles is contagious.
@tracyriordan7011
Жыл бұрын
@@stephaniegeorge I agree, Steph! I am seeing Sebastian exhibiting so much more understanding after his heart surgery! I think he is definitely understanding a lot more lately! ( :
@unknownentity7964
Жыл бұрын
@@JESUSCHRYSLER5512 stephanie deliberately wrote the title like that, it wasn't 'unfinished' or in need of correction. She wrote it like that, because in the video she was answering multiple different questions that fitted that starter of 'will Sebastian (insert rest of question), not just about his understanding and processing. Even if you thought someone (Stephanie in this case) truly made a mistake, there's far nicer ways of going about correcting them, than the passive aggressive way your comment was written. Or even better, politely ask the person if that's what they meant to write, instead of assuming you know better, in case it's a situation like this where actually your assumption was wrong. It doesn't cost anything to be nice. Ps - My apologies if that wasn't your intention with your comment, that's just how I felt your tone was suggesting, though I'm aware that tone isn't the easiest thing to convey online
@sandrameilunas8283
Жыл бұрын
I'm a mother of 6, grandmother of 9 and great-grandmother of 3 (I'm 67) and I am soooo impressed with you as a mom. God definitely gave Sebastion to the right family! Nobody's perfect , but you seem to be as close as possible. Enjoy your little one for the things that he can do or be, that's all that's important .God bless!
@biancakaye2721
9 күн бұрын
It seems like he understands alot. He responds appropriately to things said and places that you take him. I think it's fantastic. He's so incredible.
@mmmmlllljohn
Жыл бұрын
Sebastian added his smile at the end and he has the sweetest smile. You are the best mom, Stephenie, and I know Sebastian will reach his full potential with the parents and family he has around him. He is surrounded by love and patience and that is a beautiful thing. May God bless you all. ❤️🇨🇦
@aimeepetersen6514
Жыл бұрын
Love how Nala stops once you film her 😂💗 Every time!💗
@stephaniegeorge
Жыл бұрын
Lol!!
@jewelhaines8842
Жыл бұрын
I did not know my daughter had Cornelia De Lange syndrome until she was born either. Also, there are degrees of severity of the syndrome, like Downs syndrome. As I said before, my daughter is verbal and lives in a group home for disabled adults. She's pretty self sufficient, she is 36 years old. Mentally about 12 years old and emotionally about 3 years old. She walks. She reads and writes at about a 7th grade level. She eats all foods normally. I'm so glad I found this channel!! I also watch Freya!! 🥰
@stephaniegeorge
Жыл бұрын
I love this so much. Hi mama!!!!
@jewelhaines8842
Жыл бұрын
@@stephaniegeorge 🤗 Hi Stephanie!! Thank you so much for bringing awareness to CDLS!! Sébastien is absolutely amazing!! I love your videos!! Sébastien is so cute! God bless you all!❤
@tangerinefizz11
Жыл бұрын
I'm glad your daughter is so self-sufficient.
@jewelhaines8842
Жыл бұрын
@Delilah Hart Yes, it is great. Her major issues are behavioral and emotional. She is 36 years old. Emotionally, she is about 3 years old. She reads and writes at a 7-8th grade level. She has a lot of temper tantrums and some self injuring behavior. Thank you!! ❤️
@Lauren-vd4qe
Жыл бұрын
@@jewelhaines8842 how and what age did u transition her into a group adult home? did she resist the idea?
@puglife6616
Жыл бұрын
maybe the screeching hurts your child's sensory well being. i wouldn't be able to take that noise. Have a good day.
@lindamarie6574
Жыл бұрын
You & Gio are really special parents to Sebastian and his grandparents and aunts. There is a lot of love in that home and is shows in every video. Don’t forget to give Sebastian that hug and kiss from me! You are all loved and very much respected! Oh my gosh, that video of Sebastian at 2 1/2, so cute!!! And the one at 1 1/2, that cute little voice and that adorable face!❤
@clydette56
Жыл бұрын
God gave you Sébastien because you and Gio are the perfect parents for him. I love tuning in and watching him. He is beautiful. Thanks for sharing him with us.
@charlieoglesby3468
Жыл бұрын
You are great parents. You do everything for Sebastian's well being. His grandparents are great too. Love you guys so much.
@pennysmason5134
Жыл бұрын
Hello Miss Stephanie George, are you aware of the gentleman who is replying to some of our comments starting out with “Hello Pretty”? I love your channel but I do not take kindly in being harassed by a possible scammer or predator. I think a gentleman like that has no real intentions on your channel for the right reasons.
@lorihenderson1199
Жыл бұрын
Stephanie, I just want you to know that your channel has helped me in so many ways. I live alone, after raising 5 children, and I seriously hate living alone, but children grow up! 🤷🏼♀️ You have literally become my online family. I look forward to every video! I even went back and watched every video you posted. I feel so thankful to have 'accidentally' found your channel. I had followed you on Instagram for awhile, but I didn't know you had a channel on KZitem! I've loved you guys from the beginning. Thank you for sharing your family for us! All my love to you, Gio, and Sebastian! 💙❤️🩵🐕🦜 ❤🩷🧡💚💙🩵💜🫶👨👩👦🤗
@stephaniegeorge
Жыл бұрын
So happy you are here.
@lorihenderson1199
Жыл бұрын
🤦🏼♀️I tried to fix my grammatical errors, but my phone is being crazy 🤪 LMBO! But you know what I mean! 😂😂😂
@karolrust2300
Жыл бұрын
I know what you mean Lori!! I am an empty nester and a widow and I look forward to each new video!! Sebastian and his family bring immeasurable joy to so many viewers!! 🥰
@oshunbleu6511
Жыл бұрын
It's tough to transition from being full time needed mother to being alone. It's the hardest emotional rollercoaster..especially if you have not one other family member or friend.
@lovepeaceandhappinesstheha8702
Жыл бұрын
You are doing a fantastic job raising your beautiful son!! I love watching and learning about Sebastian!!
@allisonsadler719
Жыл бұрын
I have spina bifida so I know what it's like being in and out of the hospital. Again I'm so proud of you
@cynthiacondron9397
Жыл бұрын
I too am a empath and I understand how you process life. I appreciate how good you are at educate us. You both are incredible people and parents.
@clairebear1808
Жыл бұрын
Empath here yes they called me Clairevoyant bf Empath became the word.
@tdecker2937
Жыл бұрын
As a Special Ed teacher, I cringe when I hear someone making judgements about you guys as parents, implying that Sebastian’s functioning level is a result of something you’re (possibly) not doing as parents. The spectrum of CDLS functioning is vast and extremely varied. You are giving him outstanding care, but mostly, and more importantly, he is loved beyond measure! This Q & A session was awesome, hopefully you can do it again. Especially because your channel keeps growing!
@Milaperadotti
Жыл бұрын
Thank you I have a daughter that special needs, and I am judged and questioned constantly
@cynthiadavid5282
Жыл бұрын
Ur a loving mom and i give u so much credit of taking care of him i am learing alot about ur video and i say god bless u day in and day out ur an amazing women
@deedeeturner6577
Жыл бұрын
I was very surprised when she said some people question their parenting. My brain can’t even comprehend that way of thinking. She definitely seems to handle people like that with grace. God bless the people that were chosen by God to take care of these angels.
@divinetiming8422
Жыл бұрын
@@annacpa58 What is that supposed to mean? Seriously, what a horrible thing to say!
@divinetiming8422
Жыл бұрын
@@deedeeturner6577 Very nicely said and 100% so true! Thank for saying this. ❤
@Sheyann_89
Жыл бұрын
I am just absolutely amazed at what a beautiful soul this mother has. You can tell when she interacts with her son how much she truly loves him and even just watching her talk about him she lights up. Its such a beautiful thing to watch her videos. Things like this give me so much joy and remind me what truly matters in life. God bless those parents! 💕💕
@divinetiming8422
Жыл бұрын
@Tuesday Sheyann I agree! Very nice of you to point this out.
@Sheyann_89
Жыл бұрын
@@divinetiming8422 Aww thank you for your sweet comment acknowledging my comment. I really appreciate it.
@divinetiming8422
Жыл бұрын
@@Sheyann_89 You're very welcome! ⚘
@papodaca123
Жыл бұрын
I totally relate to you. I had a daughter that was severely autistic. I too felt isolated because I stayed home with her 24-7. But I wouldn't have changed a thing. She passed away at 32, now my angel on earth is now at home in heaven. I miss her every day. God bless you and your family.
@TriciaFleck
Жыл бұрын
As a mother of a severely disabled child who passed away at age 34 years old, I'd like to say what my experience has been. I waited nine years to have another child and had another child five years later. I'm so glad that I was blessed with my younger girls. They are the most compassionate and kind people. You are a sweet, lovely young mother. Pray on this and you will find the right answer for you . Sending gentle hugs.
@stephaniegeorge
Жыл бұрын
Sending you so much love Tricia. Thank you for your comment. 🥺💕
@teijaflink2226
Жыл бұрын
I would think too as your children grow to adults and you get old3r it's great to have healthy children too talk with, support and who understands and will be there for their sibling when you can't. Though I wouldn't judge a sibling who doesn't want to care for their sibling when their parents die and still good to have someone who checks they get good care.
@sherylbrown6943
Жыл бұрын
I just watched “Freya’s lucky arm. “ C.d.l.s . Her mummy is so beautiful and so informative the same as you . ❤has anyone else watched that ?it is such a large spectrum ( this disease) .
@shanimarais9695
Жыл бұрын
Stephanie, you are remarkable. Speaking from experience (different circumstances to you), please consider getting help daily, so that you can work/gym, whatever. Even if it's just from 8-12. You NEED to live a life that keeps you mentally stimulated. Trust me, depression creeps up on you and you won't realize it till it's gone to far. You are a brilliant mother and no one will think you "abandoning" Sebastián. You need adult interaction and a mental break. We all know you love and adore Sebastián, but it can become isolating and lonely at times. Sebastián is an incredible little boy, but you won't be of any use to him if you burn out. Make your working hours during a 4hr allocated schedule, Sebastián will still have 20hrs a day with you. Sending love and good wishes your way. From South Africa 🇿🇦
@anneberriman9730
Жыл бұрын
Thankyou for sharing all those questions. Lots of love and hugs from Anne in Australia
@richelledavis304
Жыл бұрын
I am Richelle Davis with Cerebral Palsy from South Africa. I am really very Blessed in that my IQ was not affected at all but it was literally seconds that made the difference. I just want to say that you are truly a beautiful Soul, remarkable Dad. I love how you talk to him, completely "normal" cause that's how he should be viewed. My parents have been wonderful and you remind me of a young version of them God Bless you both and your gorgeous boy🙏
@richelledavis304
Жыл бұрын
Would love to be able to connect with you another way to, as I have so much more I want to say.
@tracyriordan7011
Жыл бұрын
Hi Steph and Sebastian! So happy to see you both again! ( : I am so happy to hear all these questions and answers about Sebastian's life and disease. It has been so interesting to learn about how you feel and all the things you know and believe will occur in Sebastian's life. Thank you so much for sharing and opening up about all this with us. God bless you all and may only good things occur from here on out to you and your family. ❤️❤️❤️❤️🥰🥰🥰🥰🤗🤗🤗🤗
@susansnyder11
Жыл бұрын
I think there's so many variables and unknowns about Sebastian and all the unknowns about his progression that that has got to be the most frustrating thing of all. But one thing I'm sure of is that God placed him with the best parents he could ever have had. ❤
@cathykrueger4899
6 ай бұрын
I know this is a year old but I wanted to say that you are a wonderful spokesperson for CDLS. It doesn’t hurt that you are beautiful! You are a role model for all parents with disabled children. Your life is forever changed and you just continue to rise to the challenge. It is so obvious that both you and Gio love Sebastian. And we can see that he feels it. I think that’s something we know his brain is processing just fine. Love is just everything in the final analysis.
@cherylreichardt
Жыл бұрын
I will enjoy this so much! Thanks for answering the questions Stephanie! Hugs for Sebastian from Chicago ❤ 😙
@lauriegertenbach3421
Жыл бұрын
I watch both your channel and Fraya's channel as well. As a mom with a son with a serious heart defect (he's now 35) and he is now a daddy of a baby 18 months old who has an even more serious heart defect, I totally understand the differences in defects. My son lives a normal life, he has a family and home. His special needs baby is and will be much different. Edison has a G-J tube and oxygen and is delayed physically and doesn't yet say words. We never thought he would live past birth, but we are so blessed that he is doing so well, and hopefully can be with us for a very long time. I truly believe that special needs children our angels from God, given to us to be specially and carefully nurtured. Blessings to you and your beautiful family. Laurie Gertenbach
@LuisaD93
Жыл бұрын
Ty for your videos explaining Sebastian‘s CDLS. I’m not very familiar with the syndrome but from what I do know about it, it involves the mutations of at least 5 genes. Those five genes with the exception of one, which is usually shared by at least half of all affected with it , the (NIPBL gene) varies from child to child born with it which is why people don’t understand the difference between Freya (hope that’s correct) and your gorgeous Sebastian. They could have the same 5 gene mutations but most often not. Like you said. It’s not something that’s usually picked up in any standard diagnostic imaging or blood work prior to birth but can be suspected (that’s not a definitive diagnosis) in later stages of pregnancy with ultrasonic imaging but it’s not something that happens often. Your family is truly blessed and Sebastian is such a precious little boy and I appreciate you sharing him with all of us. I hope this helps some understand why children with CDLS are vastly different and I’m not trying to sound like a know it all. Bye y’all.
@carolschlick9614
Жыл бұрын
You’re amazing, my nighttime bedtime ritual is KZitem. You came up in my feed and you are just so sweet and your videos are uplifting and just great. I wish you the best health and happiness from NJ, much love and support. You’re a kick-ass Mom!
@stephaniegeorge
Жыл бұрын
Thank you so much for being here!
@carolschlick9614
Жыл бұрын
And you’re a TERRIFIC MOM! My daughter is 20 and in college. We had a very bumpy road that I won’t go into, but please, PLEASE know you’re an AMAZING PERSON and MOM
@Peanut11111
Жыл бұрын
Prays
@carolschlick9614
Жыл бұрын
@@stephaniegeorge my daughter is 20 now and it’s so cool to see all this information/content (I’m before KZitem, lol!) so I love to learn about everything, so much information on things I would NEVER have known about. Way back when it was time to choose “careers”, I chose chef, smh. I would LOVE to be a geneticist or virologist, but I believe the “career ship” has sailed, but that’s okay too! 🙂 Please keep posting, I follow SBSK as well and have learned so much!
@lorib4516
Жыл бұрын
I have seen great strides in Sebastian after his heart surgery. It appears he is stronger and with continued therapy I bet he meets many of his goals. Each goal, no matter how small, is HUGE for him. I am certain he will continue to make great progress.
@jackseve
Жыл бұрын
Aaaaw OMG. He communicates. What a sweet boy. He says hi.
@elainebell4219
Жыл бұрын
Thank you for sharing insight into your family’s life. You are very well spoken and have so much grace and compassion. I was unaware of this medical condition prior to stumbling upon your page. I appreciate the awareness that you have brought forth so that others can develop a compassionate understanding and help us learn how to help. Best of care!
@brandiebaker1396
Жыл бұрын
Hey Stephanie Sebastian and Gio! I've only been subscribed for a couple months but I absolutely love ur family!!! I've been watching all ur older videos too! U are such an amazing mother!!! Love u guys!!
@stephaniegeorge
Жыл бұрын
Thank you for being here!!!
@JR12991
Жыл бұрын
As a woman that cared in the pass for a lot of children in my family and for friends I think you’re doing an amazing job caring for your son. Also you care for your pets and that speaks to my heart as well. Continue blessings.🙌🏽
@praying4America43
Жыл бұрын
It's not crazy to feel resentment for your husband to be able to go to work while you stay home, because I loved working and meeting different people and being able to just get out of the house; after breaking my back and neck, I'm at home all the time and it sucks after awhile. It's a great thing that you and your husband can talk and make your differences work because that is how my husband and I treat certain situations and it works well with us. Prayers for you all always and definitely for my little handsome Sabastian!!!! Prayers are always with you all. 🙏
@sarah2.017
Жыл бұрын
Trust me, people who have NORMAL children feel that way.
@praying4America43
Жыл бұрын
@@sarah2.017 Absolutely. I believe that for sure
@ninademci1500
Ай бұрын
Stephanie, maybe this time Sebastian wants/wanted Nala to be quiet. 😂
@marlenecesarotti8468
Жыл бұрын
what a beautiful person & lovable son
@lesleeedey5727
11 ай бұрын
I’ve just discovered Sebastians amazing story from birth on KZitem. Mum and dad I’m in love 😻
@sylviawhite2794
Жыл бұрын
Lovely to see you today Stephanie, as I said before I have just fallen head over heals with Sebastian,he is absolutely beautiful
@fctryoffetsh39
Жыл бұрын
A beautiful child,your a beautiful woman and what a lucky man God bless😊😊
@jillpavel5975
Жыл бұрын
Watching my favorite kiddo and his pretty Mom, while I work out!
@CloudySunflowerfield
Жыл бұрын
You’re son is so lucky to have the mommy and daddy he has! ❤
@marissarembach3269
Жыл бұрын
Thank you for sharing Sebastian's condition I just adore you guys as parents you are both incredible ☺️ and Sebastian is just too adorable for words😍
@jenniferschmalhofer6535
Жыл бұрын
You are so sweet and a great Mommy, and just love Sebastian, little buddy😊
@jojosmumdorothy2829
Жыл бұрын
He's so adorable 😍
@janetmarsh3117
Жыл бұрын
It appears to me that Sebastian is very aware of what's going on!
@stephaniegeorge
Жыл бұрын
I think so, too!! 💕🙌🏼
@lorileewalters2018
Жыл бұрын
I love hearing Nala, so pretty, and love seeing Zeus, he is the most handsome dog❣️❣️And always can’t wait to see Sebastian, love that boy to the moon and back, and Stephanie love you too sweet girl. Can’t wait to hear you sing I can only imagine♥️🥰♥️🙏🏼❣️❣️❣️❣️
@oztrace6016
Жыл бұрын
Sebastian is absolutely beautiful. Love to you and your gorgeous family from Australia 🙏🥰
@kda3686
Жыл бұрын
The grinch
@karolrust2300
Жыл бұрын
Oh my goodness...Sebastian at 1& 1/2, and 2&1/2 so adorable!! His looks have changed so much from a baby face to a big boy face!🤗 I learned more about CDLS in your video today so many thanks to you Stephanie!! Blessings!!❣🙏
@junegrimley5697
Жыл бұрын
Sebastian is the cutest, that side eye he give you followed by his cheeky smile 😃 😊
@sah6532
Жыл бұрын
Hi Stephanie! I enjoy keeping up with your family especially Sebastian! Best wishes for you all and prayers are ongoing for your family ❤❤ Hugs from Texas
@karenligus8224
Жыл бұрын
Thank you for all these answers. What I can tell is that Sebastian absolutely knows the language of love that surrounds him. He is perfectly precious as God made him. You are all blessed to have each other!
@gamergirlmars
Жыл бұрын
I have Marfan Syndrome, a connective tissue disease that causes physical deformities to my joints, muscles, bone, blood, organs, hair, skin, eyes, and blood vessels. I’m falling apart but man am i happy to be alive and just you being so diligent on not letting this stop you guys is wonderful to see. Way to go momma! So, speaking of the feeding tube, I have gastroparesis and I was 80lbs a few years back. To gain weight and get mega nutrition off a tube, TPN is something they give via the IV and it is amazing what it can do. It isn’t as common in America as Europe and Australia, idk why, but it may be an option to know exists if you find yourself in a rut with gi woes and need some freedom a g j tube etc. My dad was born with flat feet and hindfoot deformity, so in turned ankles, wore leg braces like Forest Gump. They thought it was Spina Bifida for awhile, but he carried Marfan Syndrome which he gave to my brother and I. He ended up walking it just took a super long time but the braces helped a lot. My son has the same issue he did. My rib cage and heart/vascular organs are deformed but I did just get mainly the internal organ problems, and you just learn to take each day as it comes. Whatever ability you get is a gift, so I hope maybe walking will come with time for him. I have Asperger’s too, I have a niche of specific areas I’m super good at and smart about. But others I struggle immensely and am behind the curve. I wish I could have had a mom as caring and involved as you. Sebastian is a very lucky guy!:)
@renb6133
Жыл бұрын
You sound like a lovely person & have overcome a lot. I’m sorry you didn’t receive enough love & support growing up. Steph shows how important it is to have a dedicated parent. My very best to you!
@pamelajanewade938
8 ай бұрын
Stephanie thank you very much for your expertise on answers those questions. You speak with elegance and explain everything so clear. You are a absolutely wonderful mother to your precious son Sebastian. He is a delight and God will help Sebastian and you Stephanie and Geo. Heaps of love ❤ and hugs 🫂 to you Steph Gio and Sebastian from Australia 🦘🦘🦘
@ddajani45
Жыл бұрын
Why dosent gio sit sometimes with Sébastien and gives u time to go workout because u too deserve time to go workout and get ur nails done etc maybe arrange 3 days a week where u can have 2 hours for gym time
@CandyCoated96
Жыл бұрын
Sebastian is precious. Thanks for educating me on CDLS. I know parents and caregivers also need encouragement. I wanted to say, your doing great. New subscriber.
@donnaadams5217
Жыл бұрын
Would you like to live like that? SELFISH BRINGING HIM INTO THIS WORLD OF HOSPITAL, DOCS DRUGS ETC.AND HE HASNT A LIFE .
@BLUEGREEN65
Жыл бұрын
Sebastian won the lottery having you guys for parents! You take such good care of him! And so glad you are able to stay home with him because that means he is getting the best care and love possible ❤ I did think of another question, when Zeus is around Sebastian, do you think Sebastian reacts to knowing he is there? Take care!
@KL92105
Жыл бұрын
This is the best comment! I totally agree with you that Sebastian won the parent lottery in life. What a beautiful, loving and caring mom he has. Lucky boy for sure!!!
@Lauren-vd4qe
Жыл бұрын
If you write a comprehensive description of Sebastians diagnosis on your channel About page, you wouldnt have to repeat yourself to inform the viewers about his diagnosis and state.
@codename495
Жыл бұрын
Yeah, she would.
@brendarubedor722
Жыл бұрын
You are amazing, prayers for you and your precious family 🙏💕
@tlou10
Жыл бұрын
Poor Little man, he is just like the rest of us we don't anyone always wake up in a happy mood ❤
@valerierobertson6334
Жыл бұрын
I would like to know if he is aware of his surroundings and mommy and daddy, if he has pain, can you pick that up and do you know when he is happy and sad??❤❤
@All5AJz
Жыл бұрын
I can see a huge understanding of language from Sebastian. You have a miracle daily in him.
@marciaogden7273
Жыл бұрын
Sebastian is such a lucky boy to have the best parents ever. Thank-you for taking the time to educate us. He is a darling little boy.🥰👍😊
@shawntelmooney1543
Жыл бұрын
Hi, I hope that you and your family are doing great. You're a wonderful mother and your son is very handsome. Lots of love
@conniebaker1958
Жыл бұрын
Awww Steph I’m so glad you and Geo have a date night that is so special you need that. I can see Sebastian is trying to communicate and that smile says a lot ❤
@cherylpesutimassie5010
Жыл бұрын
I loved hearing Sebastian's voice. It so sweet and beautiful to hear. Thank you for sharing Sebastian and your family. You're both great parents and I'm happy to know you all...hugs from Arizona...:)
@nautaciousnat
Жыл бұрын
Stephanie, you nailed this Q&A! I was so intrigued from start to finish. And just when I didn’t think I could love him anymore, I’ve learned how truly unique he is. Sebastian beautiful, you are one in a million and you bring smiles to so many people lives! ❤
@renee4540
Жыл бұрын
Do you think that Sebastian would be able to ride a trike or one of those little big wheel type things do you think that that would be something that he or you or even Geo would be interested in getting him so that he gets a little bit of leg work I was just asking thank you Stephanie love you guys bye bye from Renee
@stephaniegeorge
Жыл бұрын
One day! He’s gotta work on some more core strength but I think he could get there!
@lwscijunkie
Жыл бұрын
Sabastian might not have a huge vocabulary at this point but he did say "hi" in response to mom saying "hi" to him more than once just on your vids...therefore he is in fact beginning to speak. I bet that he understands WAY more than he can easily express. Anyone can see that he can be totally, intently engaged and is trying hard to respond, which must be both exhausting and frustrating for him...But he keeps at it.
@rebeccajimenez5327
Жыл бұрын
I've seen him say hi lots of times. In videos he also waves.
@clairebear1808
Жыл бұрын
I believe Sebastian is fully aware of more than we think. He seems to comprehend everything he just cannot say it YET go little man 🥰
@lwscijunkie
Жыл бұрын
@@clairebear1808 I absolutely agree...How could he be so intently engaged, responding by saying "hi" and waving unless he is fully aware of what's going on? He's frustrated by his difficulty in coordinating his movements. Give him time.
@racheltessmer925
Жыл бұрын
Hi Stephanie 💖! Just a humble thanks for allowing us into your life! I laugh and cry with you. I believe Sebastian will continue to do amazing things! Because you are an amazing! I will continue to keep all of you in my 🙏🏼... especially to see Sebastian in those cute yellow Crocs! 💛😍 Love from Minnesota.☃️
@rachaelpilarcik6343
Жыл бұрын
Even his occasional sass, is adorable.😍 I'm so glad that your videos found their way, to my timeline. You have such a beautiful voice, Stephanie. What do you think Sebastians favorite song, is? And movie? Love, LOVE you guys.
@stephaniegeorge
Жыл бұрын
He loves the movie cars and he smiles any time I sing him anything lol
@rachaelpilarcik6343
Жыл бұрын
Cars was always a favorite at our house, too. My kiddos were obsessed, Awe, goodness. I wish I could carry a tune! My kids would've run for the hills, if I tried to sing to them.🤣 Are you familiar with the song Rainbows, by Casey Musgraves? Her voice reminds me, of yours. I would LOVE to here you sing that, in case you ever take any requests.;)
@suziee6387
Жыл бұрын
Thank you Stephanie❤️ you are always so open and honest! You are a great mom xo
@musicmomma39
Жыл бұрын
Thank you for being so open and honest about your lives - good and bad. God bless you all
@dlghenderson2837
Жыл бұрын
The bird would drive me nuts.
@suzybausch8587
Жыл бұрын
Those baby videos were so cute! Thanks for sharing.
@ccrgrl
Жыл бұрын
CDLS really needs more awareness and your doing a great job of that, I look forward to hearing about your chat with Freyas mom, hugs to Sebastian.💜
@amylicavoli3653
Жыл бұрын
Hi Stephanie... I never see Sebastian drink anything. Can he drink, or is it too thin and he chokes? Just wondering.. Amy
@stephaniegeorge
Жыл бұрын
At this time liquids are too thin! He chokes on them😬but hopefully we get there. Great observation Amy!!!!
@debbikelley2357
Жыл бұрын
You are such a great educator Steph. I appreciate you taking the time to share these things about Sebastian. Im sure all of us followers learned something new. Much love to you all.
@mauritamuli543
Жыл бұрын
Good morning Steph, honestly regarding baby sebs the way you took care of him I have no question about it you and gio are such a wonderful parents baby sebs are so lucky to have a parents like you bless you guys 🙏
@charlottearns2027
Жыл бұрын
Thank you for all this information ! You are a mama of knowledge! Stay the sweet caring parents that you are.
@WonderWoman-hj1ep
Жыл бұрын
..I was wondering if there is any way that there is some genetic test that you and Gio could have or HAVE had to see if there is the presence of a gene or something? Like the test they can do now to determine if there is the presence of a particular gene that predisposes you to the risk of Breast Cancer? You know what I mean? I'm just asking because I know that Sebastion...(I always refer to Little Sebastion as SeeBee. I just feel a love for that little Angel that I cannot explain.) Anyway...I know Sebastion's case is so rare and it is a very different...thing, to know what is actually happening in his mind and everything is just kind of ... Unknown. It is such a mystery, this condition...and I know you have so much on your plates with...Not Sebastion but the condition. I am just curious and I really have a soft spot in my heart for all three of you. I'm an Empath as well...maybe that is why? It works from afar. Lol! Sending you all a big hug and...I would give anything to give Seebee a hug. He is a beautiful little...Angel! Sending you positive energy.
@0431Groupie
Жыл бұрын
You are such a good communicater.0 What did you study and grad degree. Were you in communication?
@stephaniegeorge
Жыл бұрын
I actually studied psychology! Lol. Once upon a time I wanted to be a social worker and therapist. 💕
@0431Groupie
Жыл бұрын
@stephaniegeorge I am a nurse and your ability to absorb and remember medical information is amazing. I worked in infusion and your skills are impressive and precise.
@frontieromaria64
Жыл бұрын
OMG I just love the baby videos of Sebastian, he is so adorable. Beautiful family❤️
@Totalchaos0228
Жыл бұрын
Being a stay at home mom is extremely rewarding in so many ways, but it can also be very isolating. Your own social needs do not get met and sometimes you fee like a maid. Then there's the guilt...as soon as you are out or away, you feel guilty for leaving your kids or like you should be home. All of the housework and responsibilities fall on you. What's worse is people who think you get to sit at home all day and do nothing r shame you for being "lazy" and not working. Raising average children is hard, special needs children have a whole different set of needs beyond their regular care. Make sure you take care of yourself too hun.
@renee4540
Жыл бұрын
Stephanie I just want to say you look so pretty and red
@stephaniegeorge
Жыл бұрын
Thank you! I do love wearing red lol.
@pattrout3571
2 ай бұрын
gee aren't we all different lol gee Stephanie I like horses why don't you. I got all, As in school gee sweet people of the world.why isn't Sebastian like Freya because he is Sebastian. Stephanie I love you and your family. God bless you. people think kindly. God loves us all
@susanstanford6881
Жыл бұрын
Will Sebastian become a teenager?
@stephaniegeorge
Жыл бұрын
Yep! CDLS doesn’t have a direct affect on life expectancy. Should he continue to stay healthy he should live well into adulthood!
@susanstanford6881
Жыл бұрын
@@stephaniegeorge Awesome! I love Sebastian so much. Love your videos Stephanie. Love you all.
@Praise_God444
8 ай бұрын
What kind of seizures does Sébastien have I have tonic clonic
@lindathrall5133
Жыл бұрын
I SAY STEPHANIE YOU AND GEO ARE DOING GREAT WITH SEBASTIAN HE'S LEARNING TO BRUSH SEBASTIAN'S TEETH AND GIVING A BATH TO SEBASTIAN YOU LOVE HIM I WOULD LOVE TO MINISTER TO SEBASTIAN MY NAME IS ST. DAMAIEN I WOULD TAKE SEBASTIAN'S PAIN AND TRANSFER IT TO ME WHERE HE DON'T HAVE TO FEEL THE PAIN
@leannemayor5755
Жыл бұрын
We all wake up on any given day either in a great mood or not greAt sleep we often have a horrid day. I don’t have questions ,I feel like you share so much that eventually you will answers us. Seeing Sebastian with you is just lovely . He has an adorable and infectious smile. Love and hugs from Sydney australian
@pattijareo7423
Жыл бұрын
You are doing an amazing job handling all these questions with grace and clarity. Thank you so much! 🙏💕🙏💕🙏
@rentechpad
Жыл бұрын
One of the hardest questions, at least for me, when you have a child born with major medical issues or chronic problems where you are made aware that their will be numerous hospitalizations for many different reasons, where you know you maybe gone from home for extended periods of time chasing new developments and treatments, and even when at home you child with issues not only demands and needs a great deal of attention but a lot of that attention is the kind that is "drop anything else you are doing and they have to be taken care of first" type. This was a real consideration for us in deciding whether we would have any more children or not. We certainly wanted more children, but we had to take a hard look at what that meant for any other children, as well as our daughter with her issues. We knew that probably by the times she was in her teens her medical needs would be a great deal less, and at that point she would also be coming to a point where a lot of even her medical care she could do herself or at least enough of if that it would not put me in a constant 'drop and run' when she called, but we ruled out the idea that we would wait an essentially start a second family once she reached her teen years. So we were then at that point where did we plan on more children in 2-4 years or not. Two things we did not want to happen was that we were constantly in a situation where the children were essentially being raised in the same house but cared for by different people, such as other family members or help so that I would be free to either deal with our daughter and her medical needs or be nurturing a new baby/toddler and so on. Given that any hospital stay was never a couple of day affair, which many families deal with and have to focus on the hospitalized child more so for a few days than the one waiting at home or a relatives house, my daughter's hospitalizations alway were month long or longer affairs where I was literally moved in with her and not home at all. While my husband was quite able to cope by himself, and enjoys parenting as a family unit, he was early on not over joyed that having a second or third child would place him in a situation where he was essentially a single parent to at least one child when our daughter had to be hospitalized. I not only understood how he felt about that but respected his feelings on that issue. We tried looking at whether we could see a situation where with a second child we could swap roles while I was home for periods and he was at the hospital and so on. Even without other children we did this initially but it kept not working out well. I am an RN so a lot of the technical care she needs he could not perform which often meant that he had to rely on staff todo things,such as access her portand he simply did not have the answers to their questions when they were having difficulty doing it or getting her to cooperate, where if I was there it was just a simple matter for me to access her without an issue rather than have her poked more than once or having the port needle not get seated correctly. Any parent out there that end up doing this level of care for a child knows that every anatomy is different and when your the one extremely used to it, such as just how a port might be positioned, you can do it something much better than someone totally unfamiliar with your child. We also had a great deal of difficulty when trying to see how things would be for an additional child, who would almost always come second, not in love but often in attention as they were unlikely to get very sick or be at a real risk if told to wait a few minutes, and that would not be the case with their older sister. Certainly we heard parents out that had this situation, and what they did, such as special outings or days or a weekend alone with parents where they came first all the time but to us that felt pretty artificial and most of those parents that did that sort of thing agreed that it actually was - it was a treat an dthe live went back to where the healthy child came second. In almost all cases it turned out that these families did not have a diagnosis at birth but something that showed up after a couple of years where a second child was already there or on the way and they did not have a way to consider not bring a child in who would always, for the most apart take a back seat so artificially constructed times where they were the focus was the best answer. I also had the ability to talk to child life specialists that worked in the hospital where my daughter primarily received care, and learned from them that one of the reasons that they do so many things that involve the siblings of sick children is that the siblings do have a hard time in a situation like this through no ones fault at all. I also spent some time talking to people that grew up with a sibling that had great medical needs, and while those that were born before a sibling that had issues seemed to cope without issues, probably as they had time where they had more time spent with parents who could share time and focus equally before a sick sibling came along, those that had an older sibling with major issues ended up with issues into adulthood either because a lot of their care was provided by non parents or other relatives, and they had some real issues taht stemmed from the many times they had parental attention that was interrupted because of the needs of a sibling. Its not that they did not understand that the sibling had needs that often had to be addressed immediately but that understanding did not help them deal with feeling like they were always in second place. All of these things and a lot of talking we finally came to the conclusion that while we wanted other children, that was our need, and with a sick child that took so much focus and attention it would not be fair for a child to be brought into that situation.
@jmf2674
Жыл бұрын
❤out of love and logic , you chose wisely for your now family. Good job. Managing what you can manage is honest . 🙏 Enjoy your blessing with your whole heart. Thank you
@HookingGoodCreationsbyTinaC
Жыл бұрын
Hello, this is my first time seeing your channel. I appreciate you taking the time to share your experience with your sons rare disease. I truly believe that candid communication , as long as it’s delivered in a kind, respectful manner, is the best as well. I believe when we open up our minds to learn about one another, and our individual traits, we may see differences but also see the similarities. Subscribed 😊
@janetmarsh3117
Жыл бұрын
Hello sweet family!
@jddSton
Жыл бұрын
My mother had issues having children of her own. I was the only natural born child . My eldest brother lived more with my grandmother because in the 60s she had gotten a divorce and her degree. There wasn’t really daycare. So my grandparents watched him while she worked. When she met my father he was Italian but not who my grandfather wanted for my mom. So they raised him . Nothing was good enough for them we did . Then my mom adopted my brother at my age of 11 . He belonged to my cousin she was medicated on halidol and geodon and had many shock treatments. My mom died and I raised him at my age of 21 . Along with my son of 9 months and twins of 28 and 1/2 weeks and daughter of 3 months. He was very adhd and then his best friends mom died and he was much worse he did the grinding and the stimming. I was asked to be his guardian. It was way too much for me as a 24 year old then loosing my mom and raising 2 kids who were not mine. I was able to return custody of the other child to his mom at 17 . My brother left at 16 he died of a drug overdose Dec 31 of 2019. My mom passed in 94 and dad in 89 . My son has some issues with adhd. None of my kids drink smoke or partake of substances due to my brother and foster kid. But I understand all these questions. The foster kid was stunted in growth. He was non communication issues.,, we learned sign language. It’s hard . I applaud you and you are a wonderful person and mother I love the way you mother. Sorry for my long story book! ❤😂😂
@heleenzuidhof8780
Жыл бұрын
Sebastian is so dang cute!.😍 Thanks for answering questions 😊
@shenandoah7875
Жыл бұрын
There are over 500 comments on here, so I wouldn’t be surprised if someone asked this already. Have you tried or looked into trying a keto diet for your child? I have heard many stories of people with all sorts of conditions improving their symptoms with that diet.
@amyb2646
Жыл бұрын
Thank you so much for taking the time to answer all those questions, Stephanie! This was very informative. I loved seeing those videos of Sebastian from when he was younger! So cute! He is blessed to have you as his Mom, and Gio as his Dad, and be in such a loving family. Sending you all my love and hugs, I love you guys! God bless you in Jesus’s Name 🤗❤️🙏🏻🥰
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