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💕
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. 💕
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.
@@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! ( :
@@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
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!
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!❤
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! 💕💕
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.
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.
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!
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 🤗 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!❤
@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!! ❤️
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.
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. ❤️🇨🇦
You’re amazing, my nighttime bedtime ritual is TH-cam. 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!
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
@@stephaniegeorge my daughter is 20 now and it’s so cool to see all this information/content (I’m before TH-cam, 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!
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.🙌🏽
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.
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.
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...:)
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.
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. ❤
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!:)
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!
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.☃️
Just seen the clip of Sebastian when he was a few years younger, he's nothing short of adorable then and now. I love all the little noises he makes and especially adore,his smile, I just melt every time, he's so gorgeous. All this is due to you're amazing care, love and devotion, you are very special Stephanie ! Xxxxxxxx
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.
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 TH-cam! I've loved you guys from the beginning. Thank you for sharing your family for us! All my love to you, Gio, and Sebastian! 💙❤️🩵🐕🦜 ❤🩷🧡💚💙🩵💜🫶👨👩👦🤗
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!! 🥰
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.
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! ❤
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
Just found your channel! You are an amazing mom and could be a poster child for a parent with a child with disabilities showing how to love and accept the situation you are in. Your love and care for Sebastian is so apparent. He is so cute! I love the advent of YT so moms as yourself can introduce their children with disabilities to educate others. This will help build tolerance for those who are different. Adults or children. Good on you, mom and dad! Love your channel
My favorite videos are the ones you sing to Sebastian. I can see the transformation cross over his face. He knows who’s singing and he absolutely LOVES it. You can see heaven in his face. 🥰
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. 🙏
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
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 ❤
Thank you so much Steph💕💕🌸Sebastian is so darn cute & he has the most beautiful complexion🐼🥰You are one special person!!God has blessed you so much💚🌟Lol…🌈💫🐻❄️🌺
You’re amazing! It must be so hard to deal with so many unknowns with a child with such a rare syndrome but you’re really figuring it out and being realistic about things and what he can actually do, here and now.
Sebastian is quite aware and intelligent considering his difficulties. He's just such a sweetheart. Good job mum and dad on raising such a beautiful boy. Lots of hugs from the UK
I just fell in love with Sebastian. I’m a new viewer here. You are so articulate and so sweet. You were meant to be his Mom and I am going to be praying for Sebastian to stay healthy and happy. God is so loving and I believe he knew you weee the perfect mom for him what a blessing. ❤
Thank you for bringing Sebastian into our lives, I just love watching your videos, and yes you do have a beautiful voice. God bless you all .♥️ From Connecticut..
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!!
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.
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.;)
Stephanie, thanks so much for another great video. I am not sure if your realize that you are not only educating people about Sebastian’s syndrome but more importantly, you are sharing the overwhelming love that abounds in your family. Every time I see your family together and their outpouring of love for Sebastian, it makes my heart happy! ❤
Thankyou for a very interesting video. I have not been following you that long. I think Sebastian has wonderful parents, you are truly blessed with your boy. I am in England. God bless you x
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!
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
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.
You are a great advocate for Sebastian a great great mom often being someone’s full time caregiver weighs a person down and there is something about that handsome little devils smile that just melts my heart
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!
My brother has CdLS. He was born in 1982, before all the medical advances. He actually wasn’t diagnosed until he was around 3 years old, due to failure to walk. He graduated high school in 2001, and continued to go to school until he aged out and he’ll be 41 years old this year and is pretty much a healthy individual. He loves to play video games, watch comedies, and listen to country music. 😊
I've watched Sebastian grow over the last year, when he's in his chair and when mum holds him. Then Gio comes and does his beautiful boys exercises and Sebastian goes back to being a tiny precious gift. Love you all. X
This was so wonderful of you to share all this information. Sometimes it’s hard to put in words to inquire information without it sounding disrespectful.
Sebastian is one popular little dude! Don’t underestimate the impact both you and Sebastian are having raising awareness of not only his syndrome but also bringing a sense of normalcy to raising a child with special needs. I love that you answer questions about Sebastian’s future honestly and candidly. It can’t be easy not knowing what Sebastian may or not be capable of in the future but you show that his value as a human is not measured by what milestones he achieves and I think that is something we can all learn from!
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 🤗❤️🙏🏻🥰
Amazing mom! Thank you for the information, it can't always be easy. Sebastián is an Angel. It's not often that we are blessed to actually see an Angel! Thank you for sharing him with us.
OMGosh Sebastian is so adorable. When I watch your videos, I always find myself smiling from ear to ear. He's such a sassy little boy. Utterly joyful to be able to follow you guys journey 💕
You are such an awesome mom. Sebastian is very lucky to have you and Gio. It's also very enjoyable to listen to the way you explain your life with Sebastian. Thanks for keeping us so informed. I wish you all good things.
He is so beautiful! Your family love is awesome and very much appreciated! That's the way to show you have confidence in him and your selves. My mom when I was in high school babysat for very dear friend of our family, her child had the same heath issues. We all loved Jennifer as our own sister and child. Being a part of a loving family is some of the best medicine a beautiful child can receive and make life even better for them. No matter what Sébastien, knows he is loved and will never stop trying to live his life with everything he has in his soul! It shows how much he can do now! I thank you for standing by him, giving him all your love and support ❤!!! The best of it all he knows LOVE!!!
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
I learned some new things about Sebastian today. Thank you for answering people's questions. There were a lot of good questions. Much love to your family.
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 😊
I Absolutely Love Sebastian! Cutest little fella on UTube! I so look forward to his smiles. They really brighten my day! Love you little fella 💙 God Bless
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💕
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. 💕
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.
@@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! ( :
@@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
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!
I can see a huge understanding of language from Sebastian. You have a miracle daily in him.
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!❤
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! 💕💕
@Tuesday Sheyann I agree! Very nice of you to point this out.
@@divinetiming8422 Aww thank you for your sweet comment acknowledging my comment. I really appreciate it.
@@Sheyann_89 You're very welcome! ⚘
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.
Sending you so much love Tricia. Thank you for your comment. 🥺💕
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.
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!
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!! 🥰
I love this so much. Hi mama!!!!
@@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!❤
I'm glad your daughter is so self-sufficient.
@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!! ❤️
@@jewelhaines8842 how and what age did u transition her into a group adult home? did she resist the idea?
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.
You are great parents. You do everything for Sebastian's well being. His grandparents are great too. Love you guys so much.
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. ❤️🇨🇦
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.
Empath here yes they called me Clairevoyant bf Empath became the word.
You’re amazing, my nighttime bedtime ritual is TH-cam. 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!
Thank you so much for being here!
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
Prays
@@stephaniegeorge my daughter is 20 now and it’s so cool to see all this information/content (I’m before TH-cam, 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!
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.🥰👍😊
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.🙌🏽
Thank you for being so open and honest about your lives - good and bad. God bless you all
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.
You are so gracious to share answers about your life and darling Sebastian. Thank you so much! Hugs.
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.
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...:)
Thank you so much for educating me! You are truly a great mom!!!
Exactly 💯
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.
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.
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. ❤
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!:)
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!
Sebastian seems to smile with true joy with his mother and father! He is absolutely gorgeous!
You both are wonderful parents to this precious little boy.
He’s so precious! You are an amazing mother ❤
Very well spoken 👏 Steph! You are one super 👌 mama!
You are doing a fantastic job raising your beautiful son!! I love watching and learning about Sebastian!!
Watching my favorite kiddo and his pretty Mom, while I work out!
No questions… but what a handsome, smart boy, with amazing parents who advocate for him!!! Love everything about your family!!! ❤️❤️❤️
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.☃️
Just seen the clip of Sebastian when he was a few years younger, he's nothing short of adorable then and now. I love all the little noises he makes and especially adore,his smile, I just melt every time, he's so gorgeous. All this is due to you're amazing care, love and devotion, you are very special Stephanie ! Xxxxxxxx
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.
Really appreciate learning about Sebastian and all you manage to accomplish! You are a wonderful mother❤
Omg. I fall more and more n love with y’all!!! He is precious!! And he’s so blessed to have a mom and dad like y’all!!!
You are doing an amazing job handling all these questions with grace and clarity. Thank you so much! 🙏💕🙏💕🙏
💕 thank you for sharing Sebastian's story with us all 💕 I just love his Lil smile, it brightens my day 💕
OMG I just love the baby videos of Sebastian, he is so adorable. Beautiful family❤️
You are an amazing woman and mother. God Bless you and your family. We need more people like you.
So wonderful seeing Séb today. He is so cute and he is so loved. As always thank you for sharing your blessing on you tube.
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.💜
Thank you ever so much for all the info about your precious little boy. Loved his little wave at the end!!
What a fantastic Mum and person you are. Very special lady xx
That was awesome, Stephanie. Great job! Looking forward to part 2.
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 TH-cam! I've loved you guys from the beginning. Thank you for sharing your family for us!
All my love to you, Gio, and Sebastian! 💙❤️🩵🐕🦜 ❤🩷🧡💚💙🩵💜🫶👨👩👦🤗
So happy you are here.
🤦🏼♀️I tried to fix my grammatical errors, but my phone is being crazy 🤪 LMBO! But you know what I mean! 😂😂😂
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!! 🥰
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.
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! ❤
The bird would drive me nuts.
For people that love African Grey's.... ❤❤❤❤❤❤❤❤❤❤❤❤❤
Love how Nala stops once you film her 😂💗 Every time!💗
Lol!!
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
Just found your channel! You are an amazing mom and could be a poster child for a parent with a child with disabilities showing how to love and accept the situation you are in. Your love and care for Sebastian is so apparent. He is so cute! I love the advent of YT so moms as yourself can introduce their children with disabilities to educate others. This will help build tolerance for those who are different. Adults or children. Good on you, mom and dad! Love your channel
My favorite videos are the ones you sing to Sebastian. I can see the transformation cross over his face. He knows who’s singing and he absolutely LOVES it. You can see heaven in his face. 🥰
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. 🙏
Trust me, people who have NORMAL children feel that way.
@@sarah2.017 Absolutely. I believe that for sure
You are so articulate and knowledgeable..Love learning about Sebastian ♥️
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
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 ❤
Thank you for sharing, for your honesty, and openness. Blessings to you.
Thank you so much Steph💕💕🌸Sebastian is so darn cute & he has the most beautiful complexion🐼🥰You are one special person!!God has blessed you so much💚🌟Lol…🌈💫🐻❄️🌺
You’re amazing! It must be so hard to deal with so many unknowns with a child with such a rare syndrome but you’re really figuring it out and being realistic about things and what he can actually do, here and now.
Wow. You are such a good mom! Huge respect and I admire your GREAT attitude. Blessings to you and the family!
Absolutely a blessing. That smile says it all. Good job moma and dad. God bless yall.
Sebastian is quite aware and intelligent considering his difficulties. He's just such a sweetheart. Good job mum and dad on raising such a beautiful boy. Lots of hugs from the UK
I just fell in love with Sebastian. I’m a new viewer here. You are so articulate and so sweet. You were meant to be his Mom and I am going to be praying for Sebastian to stay healthy and happy. God is so loving and I believe he knew you weee the perfect mom for him what a blessing. ❤
It appears to me that Sebastian is very aware of what's going on!
I think so, too!! 💕🙌🏼
What a beautiful little boy. Those eyes! He’s got a big personality in there!
Thank you for bringing Sebastian into our lives, I just love watching your videos, and yes you do have a beautiful voice. God bless you all .♥️ From Connecticut..
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!!
Thank you for being here!!!
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.
He loves the movie cars and he smiles any time I sing him anything lol
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.;)
You are a positive energy for people.. We all need it, not just your son... You are strong
Nous renforçons ces beaux enfants et leurs belles âmes ♥💪😘🇩🇿
Stephanie, thanks so much for another great video. I am not sure if your realize that you are not only educating people about Sebastian’s syndrome but more importantly, you are sharing the overwhelming love that abounds in your family. Every time I see your family together and their outpouring of love for Sebastian, it makes my heart happy! ❤
Thankyou for a very interesting video. I have not been following you that long. I think Sebastian has wonderful parents, you are truly blessed with your boy. I am in England. God bless you x
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!
Thank you I have a daughter that special needs, and I am judged and questioned constantly
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
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.
@@annacpa58 What is that supposed to mean? Seriously, what a horrible thing to say!
@@deedeeturner6577 Very nicely said and 100% so true! Thank for saying this. ❤
Having a date night most times saves a marriage...you both can vent, relate,come together, and be romantic..Good for you!!!
EXACTLY 💯
You are a great advocate for Sebastian a great great mom often being someone’s full time caregiver weighs a person down and there is something about that handsome little devils smile that just melts my heart
U are an amazing person mom and wife . U make me so proud of you.
Thank you so much 🥺🫶🏼💕
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!
My brother has CdLS. He was born in 1982, before all the medical advances. He actually wasn’t diagnosed until he was around 3 years old, due to failure to walk. He graduated high school in 2001, and continued to go to school until he aged out and he’ll be 41 years old this year and is pretty much a healthy individual. He loves to play video games, watch comedies, and listen to country music. 😊
I've watched Sebastian grow over the last year, when he's in his chair and when mum holds him. Then Gio comes and does his beautiful boys exercises and Sebastian goes back to being a tiny precious gift. Love you all. X
This was so wonderful of you to share all this information. Sometimes it’s hard to put in words to inquire information without it sounding disrespectful.
Sebastian is one popular little dude! Don’t underestimate the impact both you and Sebastian are having raising awareness of not only his syndrome but also bringing a sense of normalcy to raising a child with special needs. I love that you answer questions about Sebastian’s future honestly and candidly. It can’t be easy not knowing what Sebastian may or not be capable of in the future but you show that his value as a human is not measured by what milestones he achieves and I think that is something we can all learn from!
I will enjoy this so much! Thanks for answering the questions Stephanie! Hugs for Sebastian from Chicago ❤ 😙
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 🤗❤️🙏🏻🥰
Amazing mom! Thank you for the information, it can't always be easy. Sebastián is an Angel. It's not often that we are blessed to actually see an Angel! Thank you for sharing him with us.
OMGosh Sebastian is so adorable. When I watch your videos, I always find myself smiling from ear to ear. He's such a sassy little boy. Utterly joyful to be able to follow you guys journey 💕
If no one told you… you look beautiful today. And you are doing an awesome job. 🙏God bless sweet Sebastian.
Thank you 🥺❤️
I love seeing baby Sebastian. He is so adorable!
You are such an awesome mom. Sebastian is very lucky to have you and Gio. It's also very enjoyable to listen to the way you explain your life with Sebastian. Thanks for keeping us so informed. I wish you all good things.
He is so beautiful! Your family love is awesome and very much appreciated! That's the way to show you have confidence in him and your selves. My mom when I was in high school babysat for very dear friend of our family, her child had the same heath issues. We all loved Jennifer as our own sister and child. Being a part of a loving family is some of the best medicine a beautiful child can receive and make life even better for them. No matter what Sébastien, knows he is loved and will never stop trying to live his life with everything he has in his soul! It shows how much he can do now! I thank you for standing by him, giving him all your love and support ❤!!! The best of it all he knows LOVE!!!
You have probably heard this many times. But you are such a warm, gentle and good mommy. Bless ur son. Beautiful family ❤
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
I learned some new things about Sebastian today. Thank you for answering people's questions. There were a lot of good questions. Much love to your family.
Nala must be an African Grey bc i sure do recognize that whistle. 🤣
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 😊
Sebastian seems to know exactly what you are saying! Thank you for sharing all the information on his health! He is a cutie!
You did great. You are so knowledgeable and a wonderful Mom. Love your videos and Sebastian.
I Absolutely Love Sebastian! Cutest little fella on UTube! I so look forward to his smiles. They really brighten my day!
Love you little fella 💙
God Bless
Great video Stephanie I do love watching, your such a beautiful family sending hugs and love ❤🐆
You are amazing...thank you for all your information. Keep going you are really fantastic and intelligent and compassionate
Sebastián is the sweetest fella.
Thank you for sharing.
I love it when he smiles! He has the cutest little dimples.