this made me cry but i am so glad he is doing good and hes such a strong little boy. my son Robert is nine months old and will be tested for L1 syndrome soon. he was born with severe congenital hydro. and we were told he might not make it and if he did he would have little to no quality of life. he can clap, wave, say mama dada and baba. he can hold and drink from his bottle and sippy cup. it hasnt been easy but GOD has given us all the strength to overcome the last nine months.
i gotta say... i love your video! i have a son with L1 syndrome ,hydrocephalus, my husband and i found out 20 weeks pregnant and now our son tyler is 8 months old and doing good he's just now holding his head up and is in theripy 2x a week....your video brought tears to my eyes, ...i hope you and your family are doing well and in a bitter sweet kind of way im glad i saw your video and its comforting to know we are not alone on this road.
oh my goodness, i just cried. bless you and your family. its so hard to see any baby go through that much pain as an infant, it breaks my heart into a million peices. i hope you guys are staying strong...you are blessed.
Thank you for the gift of your beautiful sons . Jonathan will be a great help for his little brother. I am going to send this off to the world for prayer. Prayers that you will be blessed abundantly - that little Alex will grow stronger by the day. He has a big brother who will show him the way and parents that are an inspiration to us all. JM- NH
i am hydrocephalic....i am supposed to get a shunt in about a month ..but they are not sure...they might want to hold off on it for a while..i am 14..and it is stupid that they waited so long...i would rather just not get one now...
@jesseIsMyOxygen4987 hey sweetie. I am also a hydrocephalic. my parents were told at birth I would not live. I was also supposed to be blind, crippled and retarded if I did. I am now almost 50 years old. my advise, get the surgery. you're young. you have a right to a life. my advise to alexes parents-don't give up on him. my mom refused to give up on me. and don't be afraid to let him try to do things on his own. he may surprise you. I know I have surprised many surgeons.
I hope your son has a wonderful and very fulfilling life ahead of him. He is a fighter for sure. When I watched this, I realized he is somewhat like a baby cousin of mine I never met, who suffered from bone shortening, limited movement, and brain disabilities. We all have our ways of being connected, and this just makes me realize that my baby cousin was not alone in the fight he had for his life.
I will keep him in my prayers every day. I wish you and your family the best of luck.
My nephew was born with Hydrocephalus. And i really couldnt help crying during the entire video. God Bless your family. Stay strong, ur doing a great job.
I wish you, Alex and ur whole family the best of luck !!! He seems like such a sweet boy. I recently showed this to my friend who found out that something could be wrong with her unborn baby and thanks to ur courage and what u've been through it has given her some hope! I wish u all well!!!
Of corse not. Please feel free!! We loved the card and he loved his guitar, thank you so much for thinking of us. It was very sweet. We are going to come by today and thank the class now that he is home.
My wishes for a brighter future for Alex and your family are being sent without delay. My daughter has hydrocephalus and also has CINCA syndrome. Your story although sad is inspirational. Stay strong and love will guide your way.
Wow what a great job you are doing as a mom! Staying so positive and loving him with all you got! He is just beautiful!!! I will keep all of you in my prayers. He is an amazing Gift from GOD!!!
I just prayed for you I have seen angels and know god will bless you again and again never lose faith
diesellifter 3 weeks ago
Praying for your Family. The Lord has entrusted you with this little Angel, you are blessed.
MrCortes4 5 months ago
i have hydrocephalus and i am now 25 years old
cena4111986 6 months ago
God bless you and your family... keep staying strong!!!
Twilightmom05 1 year ago
this made me cry but i am so glad he is doing good and hes such a strong little boy. my son Robert is nine months old and will be tested for L1 syndrome soon. he was born with severe congenital hydro. and we were told he might not make it and if he did he would have little to no quality of life. he can clap, wave, say mama dada and baba. he can hold and drink from his bottle and sippy cup. it hasnt been easy but GOD has given us all the strength to overcome the last nine months.
angelbiter 1 year ago
@angelbiter let me know how the testing went please! I have great resources!
JuggaletteENJ 11 months ago
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angelbiter 1 year ago
i gotta say... i love your video! i have a son with L1 syndrome ,hydrocephalus, my husband and i found out 20 weeks pregnant and now our son tyler is 8 months old and doing good he's just now holding his head up and is in theripy 2x a week....your video brought tears to my eyes, ...i hope you and your family are doing well and in a bitter sweet kind of way im glad i saw your video and its comforting to know we are not alone on this road.
jilljill8886 1 year ago
oh my goodness, i just cried. bless you and your family. its so hard to see any baby go through that much pain as an infant, it breaks my heart into a million peices. i hope you guys are staying strong...you are blessed.
ShesMySerenity 1 year ago
It made me cry to see what the poor baby had to go through. I can't imagine. They are both beautiful kids. I hope they are doing well!
mrskellog 1 year ago
Thank you for the gift of your beautiful sons . Jonathan will be a great help for his little brother. I am going to send this off to the world for prayer. Prayers that you will be blessed abundantly - that little Alex will grow stronger by the day. He has a big brother who will show him the way and parents that are an inspiration to us all. JM- NH
tmfmor 1 year ago
i am hydrocephalic....i am supposed to get a shunt in about a month ..but they are not sure...they might want to hold off on it for a while..i am 14..and it is stupid that they waited so long...i would rather just not get one now...
jesseIsMyOxygen4987 2 years ago
@jesseIsMyOxygen4987 hey sweetie. I am also a hydrocephalic. my parents were told at birth I would not live. I was also supposed to be blind, crippled and retarded if I did. I am now almost 50 years old. my advise, get the surgery. you're young. you have a right to a life. my advise to alexes parents-don't give up on him. my mom refused to give up on me. and don't be afraid to let him try to do things on his own. he may surprise you. I know I have surprised many surgeons.
TheHalfpint1961 1 year ago
I hope your son has a wonderful and very fulfilling life ahead of him. He is a fighter for sure. When I watched this, I realized he is somewhat like a baby cousin of mine I never met, who suffered from bone shortening, limited movement, and brain disabilities. We all have our ways of being connected, and this just makes me realize that my baby cousin was not alone in the fight he had for his life.
I will keep him in my prayers every day. I wish you and your family the best of luck.
Kyaroru1 2 years ago
aww he is a sweetie and a fighter :)
luv4cascy 2 years ago
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Hoopstergir2l005 2 years ago
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Hoopstergir2l005 2 years ago
he is so cute
Hoopstergir2l005 2 years ago
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Hoopstergir2l005 2 years ago
my daughter has it and just had surgery monday for a shunt
tacoluv22 2 years ago
Inspiring! Lucky baby to have such great parents. :)
boojay44 2 years ago
My nephew was born with Hydrocephalus. And i really couldnt help crying during the entire video. God Bless your family. Stay strong, ur doing a great job.
babyfefi 2 years ago
hey that baby is very smart.
younglooksrealtalks 2 years ago
I wish you, Alex and ur whole family the best of luck !!! He seems like such a sweet boy. I recently showed this to my friend who found out that something could be wrong with her unborn baby and thanks to ur courage and what u've been through it has given her some hope! I wish u all well!!!
:)
GhostAngelGirl21 3 years ago
i pray and hope your baby gets better.its so sad he seems to be in a lot of paine.
younglooksrealtalks 2 years ago
Alex is sooo cute! such a brave little soul!i'm studying about this condition in college right now. your family is in my prayers
101679101679101679 3 years ago
You're a good parent. Stay strong! I'll be praying for you and your babies safety.
00Kenshin00 3 years ago
This is a wonderful Video, you are a very strong women, i'm proud of you and Alex is lucky to have you, his dad and his big brother!
Do you mind if i pass this along to friends to vote?.. Mrs Patterson
rfussne1 3 years ago
Of corse not. Please feel free!! We loved the card and he loved his guitar, thank you so much for thinking of us. It was very sweet. We are going to come by today and thank the class now that he is home.
JuggaletteENJ 3 years ago
My wishes for a brighter future for Alex and your family are being sent without delay. My daughter has hydrocephalus and also has CINCA syndrome. Your story although sad is inspirational. Stay strong and love will guide your way.
mandajd87 3 years ago
I'm always keeping you and yours in my thoughts.
Emmy0414 3 years ago
This is hard to watch because he's such a little guy, and watching some of the things he's gone through. God bless you, your family, and little Alex.
davidm7829 3 years ago
Wow what a great job you are doing as a mom! Staying so positive and loving him with all you got! He is just beautiful!!! I will keep all of you in my prayers. He is an amazing Gift from GOD!!!
moewynne 3 years ago