As a mother to a 35 year old who was diagnosed with Opitz Syndrome, I fully understand where you are coming from. Fortunately, my daughter will live a long life. She is healthy for her syndrome, but doesn't talk, is mentally delayed and I feel sad she won't get to experience life as it should be. Besides, I am 72 years old and worry I won't be there when she is 50. Life take a hard turn for us, God bless ALL parents who are faced with those hard issues, best of luck and love to you and your family!
He is precious. I’m a mother of a child with a syndrome and complex medical conditions. He has hlhs(half a heart). I know how hard it can be, but my son has changed my life for the better. He brings me so much joy, but I know the pain of how one day he will be gone. I like to believe that Jesus will be there when that day comes. I wish you the best and oh my goodness he is adorable!
My son was born in 1983 with a more severe form of Trisomy 13. When I first saw him (he was taken to another hospital at birth) my husband & I put a Do Not Resuscitate order on him. He died at 12 days old. We couldn't stand the thought of him suffering.
He is a precious toddler & lives life to the fullest with his family. You guys are doing a great job of keeping him comfy & comfortable & it’s cool to see him relaxing with some toys in his crib & have his paci near for comfort while he sleeps the night away! God bless you!
God Bless you and your Son. I can tell you have a tender heart and good soul. You seem to have a positive attitude and perspective. Please let us know how y’all are doing Take care and give your kids one extra hug today for me. A total stranger from Mississippi, USA!!
I found myself smiling, and then tears running down my cheeks while watching this video. Lyly is so amazing, and I really just want to cuddle him! His sweet little laugh is so incredible. It is very apparent that he feels all the love, cuddles, and tickles you give him. He is such a blessing, and I feel honored to get a glimpse of his beautiful life with you, your wife, and his sweet baby sister. Thank you for educating us on Trisomy 13. I am learning so much from your videos.Thank you!
Connie - I absolutely love reading all of your comments. They always mean so much to me. In fact, I looked forward to your comment on my most recent video "hangout with lily and lyly" and I did receive a comment from you, but... when I went to read it, it seemed to have been deleted. I wanted to ask you if you meant to delete the comment or, if perhaps something else happened to it...? Thank you again - thank you always for your comments. They're always so positive, so full of love and appreciation for my beautiful children. As I said- I always look forward to them.
@@SamuelT13 Hello Samuel! I didn't delete the comment. That is so strange. I will go back and watch the video again, and leave another comment. I am so happy you told me. Thank you so much for the kind words. I truly love every one of your videos, and seeing Lyly and Lily. You have an amazing family dynamic, and little Lyly has definitely won all of our hearts!
Thank you-my son died at 8 months gestation with trisomie 13. He lived only 6 hours after emergency c-section. I too thought I could do it! Now I am grateful.
Just continue to do exactly what you're doing. Hold him, love him, sing to him, talk to him, keep him warm, let him know that you're there always as much as you possibly can. Don't concern yourselves with who thinks what if it differs from what you already know is right no matter how well meaning they may be. You two are his loving parents and you really do know his needs and how best to meet them. You are all four blessed to have each other for however long that may be.
God bless you 🙏 Autism Mom. God gave him to you because you were strong enough for him. Your his voice - His everything ❤️. I'm praying for you and your son 🙏
100 years would still not be enough ❤️ no amount of time with our babies is enough, if only forever existed with our beautiful children. Our little ones are so close in age I didn’t realise. Oscar is almost 3 and I find myself asking the same questions daily. He has just come out of hospital, he was in for 8 weeks this time! Every time I get to take him home is a blessing! Sending you all lots of love from our family to yours 🥰
Thank you for your comment. Yes.... if only. My son (Lyly) is 3 on March 31st. How about Oscar? I'm sorry to hear he spent 8 weeks in hospital. That must have been very tough for you all. Lyly has never spent more than 5 weeks in hospital (for his heart surgery - and only then, because he had a fever pre-surgery, which extended his stay) since his initial 12 week stay in the NICU when he was born. Those times in hospital are so difficult, aren't they. They've always been the hardest times for our family, as I'm sure they are for yours. I guess... we won't ever stop asking those unanswerable questions. But, we'll also never stop asking other questions, like... how happy can I make today for him? How many times can I make him laugh today? How many kisses can I lay on his forehead tonight before one of them wakes him up? I'm glad that at least we know the answer to those questions... "as many as humanly possible!" Love to Oscar and to your family.
@@SamuelT13 oscar is 3 on may the 5th! My goodness, how did they make it to 3 already? Do you find yourself asking yourself that? What a miracle, but also it’s gone too fast! It was very hard as it was all over Christmas and New Years, so it was particularly hard. Also we seen our firsts glimpse of the intensive care unit (other than NICU at birth). This was all for a measly cold this time! How can something do small to us be such a big deal to them. I think that’s what scares me the most. That great that he has managed to stay out of hospital I hope that he stays away for a really long time! That is really lovely 🥰 I only wish I had more time to spend alone with Oscar, but I have a one year old too so my time has to be divided, I miss the days I used to lay with oscar all day and watch him take every breath! Thank you and love back to you all too! I hope you are all keeping well and staying safe ❤️
Thanks for show me very clearly about ur son trying hold the toy I got it he can see he easily laugh so cute melts my heart ❤️😊🥰 blessings him in my ❤️
my pleasure. Thank you for watching & thank you for your lovely comments on my videos. He's so good with his toy syringe isn't he?? Such a skilled little cutie!
@@SamuelT13 Thanks for showing hope. I am crying as I am watching this cute baby. I lost two of my babies with Trisomy 13 and Trisomy 18. One was two days old and the other one was two months old. I know how it feels, it was the most darkest days in my life. I am still suffering and break down every time I remember my Angels. This is a horrible disease. Let me say this, enjoy every moment you have with your child. May God bless both of you. I will keep praying for you.
That would be the hardest part of having a child with trisomy is not knowing how long. I. Will be able to hold him in my arms, and feel his warm body against mine. Or see his beautiful sweet smile. I pray that god holds you in his arms tightly. Theresa from jackson michigan.
Unfortunately our genetic centres don’t try to save babies with trisomy 13 or 18 ,my sweet son passed away after three months he is in the heaven now thank you Allah🤲🏻❤️
@@debra2774 Oh, please. Do YOU really find it fitting to post something like _THIS TO S GRIEVING PARENT?!?_ Shame on you. You give us Christians a real bad name.
Do you mean they don't try to cure it, or that the centers where you live don't even give life extending treatments? I'm so sorry for your loss. I'm glad your sweet baby is at peace and in comfort with the Almighty.
He is so freaking adorable 🥰 He a happy lil boy. And his eye lashes are so long. Yes I'm so jealous of them. My nephew has t 18. He was born trisomy 18. He is only 3 days one. He is so cute also 🥰
Where is his mom? You refer only to yourself. Beyond that I commend you for your vulnerability and strength to share your families story. He seems like such a happy boy. Make use of every minute, every second and be grateful. ❤
thanks so much for your kind comment. his mother is very much around - I would say she's even his primary carer in many ways. You can see much more of her in my latest video here: th-cam.com/video/4sTrJsOWzOk/w-d-xo.html particularly at the end where theres a few family pics with her in them :)
@@SamuelT13, thank you. I watched a few more videos and saw her. You have a beautiful family. Your story helps to remind me that we are only promised the eternal present. The past is only a thought and future hasn’t happened. This maxim of life helps me to focus on every moment I am with my daughter. She is 17, a senior in high school. When we stay present, and continually bring our minds back from being lost in the inner commentary of what we think life is or should be, a transcendent happiness can arise. Because when this happens, we know experientially ,not cognitively, that this moment in time is all that truly matters.
I have two sons, and I can't imagine the pain. I'm speechless, I don't think that anyone will ever be ready to let their child go. Your little peanut an unbelievable fighter. ❤💕❤ And so are the rest of your family. How old is his little sister?
Thank you for your comment. I agree- he is an incredibly strong little boy. We're so proud of him for doing so well in everything he's been through. Thank you for your kind words. He is 3 years old (turns 3 in March), and his sister is almost 1 year old (turns 1 this month).
ultrasounds all came back negative for any abnormalities. we didnt have any additional/non-standard testing done. we didnt have NIPT because doctors didnt recommend it or worry abt the pregnancy
Thank you for your message. And thank you for missing my videos! That's so kind of you. Actually I understand though... I'm sure I would miss my son soooo much if I didn't see him every day! :) Unfortunately I just haven't had the time to spend on videos lately. I really wish I had more time, and I hope I will have time very soon. Lyly is doing very well - thank you. He's so healthy and strong lately. We bought him a walker to strengthen his cute little body.. and he's been using it every day. I will go and give him a hug now for you... :)
It's amazing that you mention that, because that has been something I've been wanting to do for a long time, and I actually had it penciled in for my next video! I'm still working out the details on exactly how I want to do it.... but yes, I certainly will do a day in the life video! :)
@@SamuelT13 I'd love to see from the time he wakes till bedtime. Also, ur narration is so beautiful and peaceful. I have a question... what is the cylinder piece that attaches to the trach?
@@martinemikita9281 Thank you. You're very kind. The cylinder piece is the filter. It stops little pieces of dust/other things from entering the trach, as well as helping to humidify the air that he breathes in (or rather, retains the moisture from his breath, rather than letting it all escape) - but the effect is to maintain a reasonable level of humidity anyway. Thank you for your question!
A pregnant mother here in texas is carrying a child with Trisomy 13 and wants to abort but it is illegal here so she has decided to go to a state where abortions are legal to terminate the pregnancy. I know people have the right to do what they think is best for them but this is still a life. Your thoughts, since you are going thru this for your son. I would understand if you don't want to reply. Thank you. 6:55
Thank you for your comment. I am personally a very strong supporter of abortion rights. I view it as a fundamental human right, and feature of any developed society. On top of that... if there are genetic abnormalities with the baby... I support it even more ardently. Honestly, this life of being a parent of a trisomy/other severe disability is NOT for everyone. Only a very select group of quite special people can provide an adequate home for children with these severe disabilities... I think many people would find their lives completely ruined and their capacity to care for the infant (or their existing children) severely diminished by the addition of a trisomy child. It is not easy at all... even for those of us who are well-equipped to do it (such as myself and my wife)... if you don't wade into it at least somewhat willingly, I dont think you should do it, and therefore an abortion is the best option. I'm extremely lucky to be relatively OK living this life raising my son and daughter. Nobody else in my life (friends, family) would be able to do it without some absolutely extreme sacrifices that would not be in anyones best interests. I wouldnt wish it on any of them. And if it were to happen to any of them, i'd support/encourage their option to abort. I might make a video about abortion re: trisomy actually.. Its definitely a topic that should be discussed more.
A classmate had a daughter with trisomy 13 about 40 years ago. Through lots of medical treatment and the loving care of the parents, she lived to be 6. Instead of fooling around with viruses and humanized mice, perhaps trying to fix genetic problems would be of greater benefit.
Hi can’t help watching ur videos again want new video but I know u busy with ur lyles how he doing still learning how to walker ☺️ wonder u have Facebook or only TH-cam? I have too just wondering how buddy my sweetie 🥰🤗
Hi Darlene, Thank you for your lovely comment as always. I do have FB & other social media, but I really don't use them much at all. This youtube channel is my primary way of posting content about Lyly. I am working on a new video today for you!! I hope I can release it tonight or tomorrow! Sorry it has been so long!!! Thank you again
Why do you assume we knew he had this condition before he was born? We found out about his condition the day he was born. Thanks for calling us cruel though. Nice of you...
I could never put a child through the pain and suffering. No life just exists. To each is own and thats fine. If saving pain and suffering for a baby is not me. Sorrrry. I guess im evil now rignt
nobody would intentionally put a child through pain & suffering, of course. That goes without saying. We didn't know our child was anything but totally normal until the moment he was born... there was nothing intentional about it. Once he was born, our life became dedicated to making his life as comfortable and happy as possible.. as it is for any parent. So no, you're not evil. You're the same as any other sane/normal person.
@@SamuelT13 you said in your video you didn’t know until a week after he was born? I am wondering what happened as these babies cannot breathe on their own initially and need lots of care and can’t nurse normally - honestly it’s sad to listen to his labored phlegmatic breaths as it’s so hard on his tiny body.
@@4Mr.Crowley2 thats right. When he was born, I expected a completely healthy baby. I only found out something was wrong with him when I went in to meet him for the first time after my wife's emergency C-section (heart rate was dropping during contractions, which prompted doctors to switch from regular birth to csection). We transferred my son to a large hospital (from small maternity clinic) an hour or so after birth. And he went straight into the NICU for 3 months. He was put on a bi-pap and then soon after c-pap soon after birth. Eventually he was scheduled for a trachotomy and used a ventilator to breathe. After a couple of years he no longer needed the ventilator and now just has the trach with a small filter/humidifier attached. No machines needed. Hope that is all the info you were after :)
As a mother to a 35 year old who was diagnosed with Opitz Syndrome, I fully understand where you are coming from. Fortunately, my daughter will live a long life. She is healthy for her syndrome, but doesn't talk, is mentally delayed and I feel sad she won't get to experience life as it should be. Besides, I am 72 years old and worry I won't be there when she is 50. Life take a hard turn for us, God bless ALL parents who are faced with those hard issues, best of luck and love to you and your family!
What a beautiful testimony to your beloved baby boy.
He is precious. I’m a mother of a child with a syndrome and complex medical conditions. He has hlhs(half a heart). I know how hard it can be, but my son has changed my life for the better. He brings me so much joy, but I know the pain of how one day he will be gone. I like to believe that Jesus will be there when that day comes. I wish you the best and oh my goodness he is adorable!
So wonderful to hear from a father
To give him all the love you are giving him, is a life well spent...
❤❤❤❤❤
...Your Purpose defined by the Life of Your Perfect Son. God Bless You ... and May You Find Peace.
seeing your son smile at 5:03; he is already living his life with the time and love you are giving him. hope is well with you and your son.
He is so cute and beautiful when he smiles and laughs. 😊
My son was born in 1983 with a more severe form of Trisomy 13. When I first saw him (he was taken to another hospital at birth) my husband & I put a Do Not Resuscitate order on him. He died at 12 days old. We couldn't stand the thought of him suffering.
I can’t imagine the love he must feel from his family :’)
He is a precious toddler & lives life to the fullest with his family.
You guys are doing a great job of keeping him comfy & comfortable & it’s cool to see him relaxing with some toys in his crib & have his paci near for comfort while he sleeps the night away! God bless you!
He had the most beautiful, long eye lashes & such a Cutti!
He's precious. Thank you for sharing him with me.
Those beautiful eyelashes. Sweet baby.
God Bless you and your Son. I can tell you have a tender heart and good soul. You seem to have a positive attitude and perspective. Please let us know how y’all are doing Take care and give your kids one extra hug today for me. A total stranger from Mississippi, USA!!
I found myself smiling, and then tears running down my cheeks while watching this video. Lyly is so amazing, and I really just want to cuddle him! His sweet little laugh is so incredible. It is very apparent that he feels all the love, cuddles, and tickles you give him. He is such a blessing, and I feel honored to get a glimpse of his beautiful life with you, your wife, and his sweet baby sister. Thank you for educating us on Trisomy 13. I am learning so much from your videos.Thank you!
Connie - I absolutely love reading all of your comments. They always mean so much to me.
In fact, I looked forward to your comment on my most recent video "hangout with lily and lyly" and I did receive a comment from you, but... when I went to read it, it seemed to have been deleted. I wanted to ask you if you meant to delete the comment or, if perhaps something else happened to it...?
Thank you again - thank you always for your comments. They're always so positive, so full of love and appreciation for my beautiful children. As I said- I always look forward to them.
@@SamuelT13 Hello Samuel! I didn't delete the comment. That is so strange. I will go back and watch the video again, and leave another comment. I am so happy you told me.
Thank you so much for the kind words. I truly love every one of your videos, and seeing Lyly and Lily. You have an amazing family dynamic, and little Lyly has definitely won all of our hearts!
Thank you-my son died at 8 months gestation with trisomie 13. He lived only 6 hours after emergency c-section. I too thought I could do it! Now I am grateful.
You give him the happiest most comfortable and loving experience of life that you can.
You are a very wise father. Thank you for sharing.
What a beautiful and loving video.
Celebrate each new day with him, and know you have given him everything he needed. Love is the key ❤
You are giving him a full and happy life! You will have done everything you could. Know that.
He’s so beautiful!!!
Beautiful little boy. I'm in tears.
What a beautiful family.....😊
You are brave father and your son is so beautiful ❤️
God knows best. Daddys love is pure and unconditional. Ur doin a great job..amazing job..he must be so lucky to have you as dad
If there was a god, he wouldn't be making chromosomal mistakes.
Love this precious boy. Just love him.
Ahhh he is a blessing
I would be the same as you - each day loving him to the fullest
he's beautiful.....i love him.....
Just continue to do exactly what you're doing. Hold him, love him, sing to him, talk to him, keep him warm, let him know that you're there always as much as you possibly can. Don't concern yourselves with who thinks what if it differs from what you already know is right no matter how well meaning they may be. You two are his loving parents and you really do know his needs and how best to meet them. You are all four blessed to have each other for however long that may be.
Beautiful boy❤
God bless you 🙏 Autism Mom. God gave him to you because you were strong enough for him. Your his voice - His everything ❤️. I'm praying for you and your son 🙏
your little angel, wherever he is right now I'm certain that God is with him sending hugssss to your whole family
Thank you :) just to clarify though - he's still alive and with us here at home.
Someone must be smiling down on him :)
He is beautiful. What a sweet smile.
100 years would still not be enough ❤️ no amount of time with our babies is enough, if only forever existed with our beautiful children. Our little ones are so close in age I didn’t realise. Oscar is almost 3 and I find myself asking the same questions daily. He has just come out of hospital, he was in for 8 weeks this time! Every time I get to take him home is a blessing!
Sending you all lots of love from our family to yours 🥰
Thank you for your comment.
Yes.... if only.
My son (Lyly) is 3 on March 31st. How about Oscar?
I'm sorry to hear he spent 8 weeks in hospital. That must have been very tough for you all. Lyly has never spent more than 5 weeks in hospital (for his heart surgery - and only then, because he had a fever pre-surgery, which extended his stay) since his initial 12 week stay in the NICU when he was born.
Those times in hospital are so difficult, aren't they. They've always been the hardest times for our family, as I'm sure they are for yours.
I guess... we won't ever stop asking those unanswerable questions. But, we'll also never stop asking other questions, like... how happy can I make today for him? How many times can I make him laugh today? How many kisses can I lay on his forehead tonight before one of them wakes him up?
I'm glad that at least we know the answer to those questions... "as many as humanly possible!"
Love to Oscar and to your family.
@@SamuelT13 oscar is 3 on may the 5th! My goodness, how did they make it to 3 already? Do you find yourself asking yourself that? What a miracle, but also it’s gone too fast!
It was very hard as it was all over Christmas and New Years, so it was particularly hard. Also we seen our firsts glimpse of the intensive care unit (other than NICU at birth). This was all for a measly cold this time! How can something do small to us be such a big deal to them. I think that’s what scares me the most.
That great that he has managed to stay out of hospital I hope that he stays away for a really long time!
That is really lovely 🥰 I only wish I had more time to spend alone with Oscar, but I have a one year old too so my time has to be divided, I miss the days I used to lay with oscar all day and watch him take every breath!
Thank you and love back to you all too! I hope you are all keeping well and staying safe ❤️
He is so joyful, is this typical?
Sweet baby
God bless 🙏🏻🙏🏻🙏🏻
This is beautiful ❤️
Very nice family👍😎♥️♥️♥️🤩!
That was a lovely video.
Thanks for show me very clearly about ur son trying hold the toy I got it he can see he easily laugh so cute melts my heart ❤️😊🥰 blessings him in my ❤️
my pleasure. Thank you for watching & thank you for your lovely comments on my videos.
He's so good with his toy syringe isn't he?? Such a skilled little cutie!
@@SamuelT13 yeah u right cute always keep him busy happy right never thought use syringe lol to play with his mouth think cute ☺️
@@SamuelT13 Thanks for showing hope. I am crying as I am watching this cute baby. I lost two of my babies with Trisomy 13 and Trisomy 18. One was two days old and the other one was two months old. I know how it feels, it was the most darkest days in my life. I am still suffering and break down every time I remember my Angels. This is a horrible disease. Let me say this, enjoy every moment you have with your child. May God bless both of you. I will keep praying for you.
Ah, but you have loved him so much. Such a lucky little boy.
He is a precious gift from God, Jesus loves you all and He is watching over Samuel ❤
That would be the hardest part of having a child with trisomy is not knowing how long. I. Will be able to hold him in my arms, and feel his warm body against mine. Or see his beautiful sweet smile. I pray that god holds you in his arms tightly. Theresa from jackson michigan.
Unfortunately our genetic centres don’t try to save babies with trisomy 13 or 18 ,my sweet son passed away after three months he is in the heaven now thank you Allah🤲🏻❤️
Allah is not God. I'm sorry for your loss of your son. He is now with the true God, the God of the bible.
@@debra2774 Oh, please. Do YOU really find it fitting to post something like _THIS TO S GRIEVING PARENT?!?_
Shame on you. You give us Christians a real bad name.
@debra2774 you realize that biblically speaking, they are THE SAME GOD.
@debra2774 you are as unchristian and heartless as you are ignorant. Grow up.
Do you mean they don't try to cure it, or that the centers where you live don't even give life extending treatments? I'm so sorry for your loss. I'm glad your sweet baby is at peace and in comfort with the Almighty.
He is beautiful and precious in every single way.
couldn't agree more!!
He sooooo handsome ❤❤❤❤
totally agree :)
He is so freaking adorable 🥰 He a happy lil boy. And his eye lashes are so long. Yes I'm so jealous of them. My nephew has t 18. He was born trisomy 18. He is only 3 days one. He is so cute also 🥰
What is the point to call ill
child "adorable"?..You might have a kind heart and right attitude,but it's wrong to use adverse meanings.Very wrong.
uh.. he is adorable? lol why does it matter if he's "ill" or not ?
Does he have a quality of life?
here's a video about that: th-cam.com/video/UlZLTqj-5bw/w-d-xo.html
And a podcast ep i did chatting about it: th-cam.com/video/C0hZNGbuh10/w-d-xo.html
Where is his mom? You refer only to yourself. Beyond that I commend you for your vulnerability and strength to share your families story. He seems like such a happy boy. Make use of every minute, every second and be grateful. ❤
thanks so much for your kind comment.
his mother is very much around - I would say she's even his primary carer in many ways.
You can see much more of her in my latest video here:
th-cam.com/video/4sTrJsOWzOk/w-d-xo.html
particularly at the end where theres a few family pics with her in them :)
@@SamuelT13, thank you. I watched a few more videos and saw her. You have a beautiful family. Your story helps to remind me that we are only promised the eternal present. The past is only a thought and future hasn’t happened. This maxim of life helps me to focus on every moment I am with my daughter. She is 17, a senior in high school. When we stay present, and continually bring our minds back from being lost in the inner commentary of what we think life is or should be, a transcendent happiness can arise. Because when this happens, we know experientially ,not cognitively, that this moment in time is all that truly matters.
I have two sons, and I can't imagine the pain. I'm speechless, I don't think that anyone will ever be ready to let their child go. Your little peanut an unbelievable fighter. ❤💕❤ And so are the rest of your family. How old is his little sister?
Thank you for your comment.
I agree- he is an incredibly strong little boy. We're so proud of him for doing so well in everything he's been through.
Thank you for your kind words.
He is 3 years old (turns 3 in March), and his sister is almost 1 year old (turns 1 this month).
He’s so handsome look at those eyelashes 😘
Thank You for sharing ❤️.
May I ask how you only found out after birth? Patau syndrome is one of the birth defects they test for during prenatal check ups right?
ultrasounds all came back negative for any abnormalities. we didnt have any additional/non-standard testing done. we didnt have NIPT because doctors didnt recommend it or worry abt the pregnancy
How ur son doing sound quiet no video missing ur video 😏🥰 hopefully he doing well hugging him for me 🤗
Thank you for your message.
And thank you for missing my videos! That's so kind of you.
Actually I understand though... I'm sure I would miss my son soooo much if I didn't see him every day! :)
Unfortunately I just haven't had the time to spend on videos lately. I really wish I had more time, and I hope I will have time very soon.
Lyly is doing very well - thank you. He's so healthy and strong lately. We bought him a walker to strengthen his cute little body.. and he's been using it every day.
I will go and give him a hug now for you... :)
@@SamuelT13 aww sweetie Thanks more new video 🥰happy Valentine’s Day to guys and ur little buddies 🥰🥰
Oh boy....those eyelashes❤❤
He has a good life! He is precious. How old is he now? Wish we could give him a cuddle!
He is 3 years old next month :)
I'll give him a cuddle for you when he wakes up from his cute little sleep!
Thank you for your lovely comment.
❤❤❤
How is he doing?
hes doing well lately thanks for asking :)
check my Community page (on this channel) where I sometimes post update pics
hes a handsome little guy
I cry, sorry it is just so sad
Im so sorry. Life isn't fair.
I hate when Doctor's say "Incompatible with life!" Clearly he's not Incompatible in any way. What matters here is that there is LOVE.
Can u do a "Day in the life" video?!
It's amazing that you mention that, because that has been something I've been wanting to do for a long time, and I actually had it penciled in for my next video!
I'm still working out the details on exactly how I want to do it.... but yes, I certainly will do a day in the life video! :)
@@SamuelT13 I'd love to see from the time he wakes till bedtime. Also, ur narration is so beautiful and peaceful.
I have a question... what is the cylinder piece that attaches to the trach?
@@SamuelT13 Also... do this search in Amazon... I think ur son would love it. "Baby Paper Original Crinkle Sensory Toy for Babies and Infants"
@@martinemikita9281 Thank you. You're very kind.
The cylinder piece is the filter. It stops little pieces of dust/other things from entering the trach, as well as helping to humidify the air that he breathes in (or rather, retains the moisture from his breath, rather than letting it all escape) - but the effect is to maintain a reasonable level of humidity anyway.
Thank you for your question!
@@SamuelT13 Ahhh ok. That makes sense. What happens if the trach is pulled out from his throat area? Can he still breathe?
A pregnant mother here in texas is carrying a child with Trisomy 13 and wants to abort but it is illegal here so she has decided to go to a state where abortions are legal to terminate the pregnancy. I know people have the right to do what they think is best for them but this is still a life. Your thoughts, since you are going thru this for your son. I would understand if you don't want to reply. Thank you. 6:55
Thank you for your comment.
I am personally a very strong supporter of abortion rights. I view it as a fundamental human right, and feature of any developed society.
On top of that... if there are genetic abnormalities with the baby... I support it even more ardently.
Honestly, this life of being a parent of a trisomy/other severe disability is NOT for everyone. Only a very select group of quite special people can provide an adequate home for children with these severe disabilities... I think many people would find their lives completely ruined and their capacity to care for the infant (or their existing children) severely diminished by the addition of a trisomy child. It is not easy at all... even for those of us who are well-equipped to do it (such as myself and my wife)... if you don't wade into it at least somewhat willingly, I dont think you should do it, and therefore an abortion is the best option.
I'm extremely lucky to be relatively OK living this life raising my son and daughter. Nobody else in my life (friends, family) would be able to do it without some absolutely extreme sacrifices that would not be in anyones best interests. I wouldnt wish it on any of them. And if it were to happen to any of them, i'd support/encourage their option to abort.
I might make a video about abortion re: trisomy actually.. Its definitely a topic that should be discussed more.
@SamuelT13 Thank you for your reply. Good information.
@@justsaying9604 you're very welcome
Trisomy 18….edwards syndrome
A classmate had a daughter with trisomy 13 about 40 years ago. Through lots of medical treatment and the loving care of the parents, she lived to be 6. Instead of fooling around with viruses and humanized mice, perhaps trying to fix genetic problems would be of greater benefit.
Hi can’t help watching ur videos again want new video but I know u busy with ur lyles how he doing still learning how to walker ☺️ wonder u have Facebook or only TH-cam? I have too just wondering how buddy my sweetie 🥰🤗
Hi Darlene,
Thank you for your lovely comment as always.
I do have FB & other social media, but I really don't use them much at all. This youtube channel is my primary way of posting content about Lyly.
I am working on a new video today for you!! I hope I can release it tonight or tomorrow!
Sorry it has been so long!!!
Thank you again
@@SamuelT13 oh sweetie thanks ❤️ wait for your video ☺️☺️
@@SamuelT13 oh true I understand u not used Facebook not worry 😁😁can’t wait heard from u video if u have time soon 🥰
I would let this beautiful child be at peace with god ,x
imagine telling a father to let their child perish.
cringe
😭
Why do you bring him to this world?? Very cruel parents
Why do you assume we knew he had this condition before he was born?
We found out about his condition the day he was born.
Thanks for calling us cruel though. Nice of you...
There is no quality of life for this kid. Parents are egoists.
lol what a stupid comment
What exactly makes us egoists mate? Back up your opinion with something of actual substance.
Predicting zero reply.
I could never put a child through the pain and suffering. No life just exists. To each is own and thats fine. If saving pain and suffering for a baby is not me. Sorrrry. I guess im evil now rignt
nobody would intentionally put a child through pain & suffering, of course. That goes without saying.
We didn't know our child was anything but totally normal until the moment he was born... there was nothing intentional about it. Once he was born, our life became dedicated to making his life as comfortable and happy as possible.. as it is for any parent.
So no, you're not evil. You're the same as any other sane/normal person.
@@SamuelT13 you said in your video you didn’t know until a week after he was born? I am wondering what happened as these babies cannot breathe on their own initially and need lots of care and can’t nurse normally - honestly it’s sad to listen to his labored phlegmatic breaths as it’s so hard on his tiny body.
@@4Mr.Crowley2 thats right. When he was born, I expected a completely healthy baby. I only found out something was wrong with him when I went in to meet him for the first time after my wife's emergency C-section (heart rate was dropping during contractions, which prompted doctors to switch from regular birth to csection).
We transferred my son to a large hospital (from small maternity clinic) an hour or so after birth. And he went straight into the NICU for 3 months.
He was put on a bi-pap and then soon after c-pap soon after birth. Eventually he was scheduled for a trachotomy and used a ventilator to breathe. After a couple of years he no longer needed the ventilator and now just has the trach with a small filter/humidifier attached. No machines needed.
Hope that is all the info you were after :)