Thanks for the blessings! He is now off the vent while awake, so we put it on when he is takings naps & during the night. The pulse ox we only use at night too, or if we think he is getting sick we check his sats with it.
Don't feel sorry, he doesn't have the helmet anymore. Since he was born premature he had what they call a preemie head.. flat allover. The "helmet" (actually called a DOC band, helped mold his head correctly. Now he has a beautiful round head thanks to the helment :)
he's so cute! how did u find out about him having prader-willi? is there a reason why he has a tracheostomy? well, i bet ur really proud to have such an adorable baby.
He had the trach done before we found out about Prader-willi. The trach was because he took very shallow breathes, we knew it wasn't just his prematurity. Since he wasn't thriving his genecist had a hunch that he might have Prader-Willi, they did DNA testing & that's how we got a positive for it. I am soo proud, everyday is a miracle with him around.
He does have a feeding tube also. I know what you mean, Sebastian is such a snug bug... for what I've heard they love to cuddle & are very sociable kids.. must be true cause everyone we meet falls in love with him.
He was born 10 weeks early & with Prader-Willi Syndrome - all this made his breathes shallow, so he wasn't eliminating all the CO2 he was suppose to. He is getting stronger each day so someday he'll be free of all tubes!!
ce bébé est vraiment trés beau j'espère que tout va bien bisous et courage a sa famille
SINARD1 3 years ago
Is he on the vent all the time?
Does he ever get off the pulse oximeter/
GOD BLESS!
1992peter 4 years ago
Thanks for the blessings! He is now off the vent while awake, so we put it on when he is takings naps & during the night. The pulse ox we only use at night too, or if we think he is getting sick we check his sats with it.
moscoso71706 4 years ago
such a cute baby......... i luv blues clues too!!
Ralydolly22 4 years ago
What happened to his head. I felt sorry for him.
j6w601 4 years ago
Don't feel sorry, he doesn't have the helmet anymore. Since he was born premature he had what they call a preemie head.. flat allover. The "helmet" (actually called a DOC band, helped mold his head correctly. Now he has a beautiful round head thanks to the helment :)
moscoso71706 4 years ago
he's so cute! how did u find out about him having prader-willi? is there a reason why he has a tracheostomy? well, i bet ur really proud to have such an adorable baby.
leverymerica 4 years ago
He had the trach done before we found out about Prader-willi. The trach was because he took very shallow breathes, we knew it wasn't just his prematurity. Since he wasn't thriving his genecist had a hunch that he might have Prader-Willi, they did DNA testing & that's how we got a positive for it. I am soo proud, everyday is a miracle with him around.
moscoso71706 4 years ago
he's an adorable baby. i saw ur other vid with the dancing. i thought that was pretty funny.
leverymerica 4 years ago
does he have the feeding tube also? my son has prader willi. he is as cute as can be though and loves to laugh and smile.
davenichole 4 years ago
He does have a feeding tube also. I know what you mean, Sebastian is such a snug bug... for what I've heard they love to cuddle & are very sociable kids.. must be true cause everyone we meet falls in love with him.
moscoso71706 4 years ago
He's so cute. =) I just have one doubt, what does he need a tracheostomy and that tube for?
CagalliLacusXD 4 years ago
He was born 10 weeks early & with Prader-Willi Syndrome - all this made his breathes shallow, so he wasn't eliminating all the CO2 he was suppose to. He is getting stronger each day so someday he'll be free of all tubes!!
moscoso71706 4 years ago
aww bless his little heart :)
ilovegribble 4 years ago
aww. breaks the heart. :(
edisonmonstera 4 years ago