tyenobia l
My baby was born on june 21, 2012. I had her at 36wks n 7days. She was preemie. She was 4lbs 12oz. She stayed in NICU for 6wks due to her developmental issue. She was on oxygen for only one day after birth. She was very weak. She wasnt eatting well so she was eating from a feeding tube. Then like a week of being in NICU they then dicover that she had cleft palate; n which thats why it was hard for to take all bottle but she took 4 bottles a day. Then they discovered 2wks after that. That she had a hip click in her hip. But all other tests that was given was all normal from her brain to her heart everything was normal. When she came home on july 29, 2012. She came home on the tube nd a apena monitor, and 10 different doctors appointments. 3 wks after being home the hospital called and said her Genetic test reslts came back that she has KABUKI SYMDROME. By looking up the syndrome. I learn that my baby only have some variations of it like. The cleft palate, hip dislocation, low set ears, n some temporary developmentant abnormalties. Like her breathing, small heart problems but not serious, one kidney smaller then the other, small intestinal problem, but no sign the she id retarted. But Im scared bcause my son was born normal nd wasnt preemie, nd he's 1yrs old. Nd noone have no syndrome or retardation in me or my husband family. I need some clairity to feel better. Someone please help if u know anything about KABUKI SYNDROME . THANKS!!!
Answer
36 weeks + 7 days = 37 weeks....full term in 38-42 weeks...
1 week premature is really inconsequential almost all of the time.
She was A LITTLE small for 37 weeks.
The issues were not caused by the early birth.
http://en.wikipedia.org/wiki/Kabuki_syndrome
most children with this syndrome do have intellectual disability
YOU CAN"T TELL IF A NEWBORN HAS AN INTELLECTUAL DISABILITY.....there is no way to test the skills---as a newborn hardly has any skills besides eating, pooping, and sleeping
if you are in the US, contact the state early intervention service when she is about 6 months (unless the doctor recommends sooner) a speech therapist might get involved sooner due to the cleft...there will be some indications around 6 months if there is any cognitive delay, but nothing that will say one way or the other for sure....some delays can be overcome...your child may be school age before you will be able to tell the extent of the intellectual issues.
IN REGARDS TO YOUR PREVIOUS QUESTION ABOUT CUSTODY BY A STEP PARENT. ...changing the 1st child's name to the last name of the step parent will have NO EFFECT on custody.
The bio dad would need to give up his rights, have those rights taken away, or just allow the older child to continue to live with step dad....
if the bio dad wants custody and is fit, his rights will be favored over step dads.
you should have a will/custody documents indicating who you would like to raise your children should something happen to you...you can name step dad...but also need back up....in case something happens to both of you at the same time....
if bio dad has no interest and gives up his rights---step dad should adopt
you describe serious abuse toward you in another question, it is doubtful stepdad would be allowed to adopt..and if the abuse is geared toward them, you can expect to lose both the kids.
36 weeks + 7 days = 37 weeks....full term in 38-42 weeks...
1 week premature is really inconsequential almost all of the time.
She was A LITTLE small for 37 weeks.
The issues were not caused by the early birth.
http://en.wikipedia.org/wiki/Kabuki_syndrome
most children with this syndrome do have intellectual disability
YOU CAN"T TELL IF A NEWBORN HAS AN INTELLECTUAL DISABILITY.....there is no way to test the skills---as a newborn hardly has any skills besides eating, pooping, and sleeping
if you are in the US, contact the state early intervention service when she is about 6 months (unless the doctor recommends sooner) a speech therapist might get involved sooner due to the cleft...there will be some indications around 6 months if there is any cognitive delay, but nothing that will say one way or the other for sure....some delays can be overcome...your child may be school age before you will be able to tell the extent of the intellectual issues.
IN REGARDS TO YOUR PREVIOUS QUESTION ABOUT CUSTODY BY A STEP PARENT. ...changing the 1st child's name to the last name of the step parent will have NO EFFECT on custody.
The bio dad would need to give up his rights, have those rights taken away, or just allow the older child to continue to live with step dad....
if the bio dad wants custody and is fit, his rights will be favored over step dads.
you should have a will/custody documents indicating who you would like to raise your children should something happen to you...you can name step dad...but also need back up....in case something happens to both of you at the same time....
if bio dad has no interest and gives up his rights---step dad should adopt
you describe serious abuse toward you in another question, it is doubtful stepdad would be allowed to adopt..and if the abuse is geared toward them, you can expect to lose both the kids.
what are the essentials for a newborn?
Raina
my son is due march 16th 2012 and i still haven't bought anything! i'm really worried about rushing and forgetting things. i know that march is still pretty cold (ohio) so i think i will get winter items from 0-3 and spring items later. but what does a baby NEED in their first 3 months? i am not planing on getting everything at once like the teethers and what not that a newborn won't need. what do babies REALLY need. we are also on a pretty tight budget so if you have any inexpensive stores in mind i would like to know them! thank you
also what it better : a bassinet, a crib, or a play-pen that has the diaper changing table and can convert to different floor levels? i will not be setting up a baby nursery anytime soon (personal preference) so what is more appropriate when on a budget?
Answer
-Car seat
-stroller
-crib or bassinet
-baby monitors
-bottles and nipples [ even if yer breastfeeding]
-breast pump
-breastfeeding accessories if breastfeeding
-bibs
-onezies
-clothes
-diapers, wipes, diaper creme
-baby laundry detergent [DONT use your own, get one for babies]
-southers [optional]
-blankets
-reciving blankets
-shampoo, soap , baby lotion,
-towals and clothes
-a baby bath tub
-nail and first aid kit [made for babys]
-baby snow suit and winter clothes b/c you said it will still be cold out
-id say hand covers so they don't scratch themselves
-for diapers, get one box newborn then size 1's .. b/c they grow FAST
-formula if not breastfeeding
-baby bag
-bumper pads for crib
-furniture like: crib, dresser, chair[optional,] changing table[optinal] etc.
What i thought of off the top of my head
-Car seat
-stroller
-crib or bassinet
-baby monitors
-bottles and nipples [ even if yer breastfeeding]
-breast pump
-breastfeeding accessories if breastfeeding
-bibs
-onezies
-clothes
-diapers, wipes, diaper creme
-baby laundry detergent [DONT use your own, get one for babies]
-southers [optional]
-blankets
-reciving blankets
-shampoo, soap , baby lotion,
-towals and clothes
-a baby bath tub
-nail and first aid kit [made for babys]
-baby snow suit and winter clothes b/c you said it will still be cold out
-id say hand covers so they don't scratch themselves
-for diapers, get one box newborn then size 1's .. b/c they grow FAST
-formula if not breastfeeding
-baby bag
-bumper pads for crib
-furniture like: crib, dresser, chair[optional,] changing table[optinal] etc.
What i thought of off the top of my head
Powered by Yahoo! Answers
Title Post: Can my baby be retarted because of kabuki syndrome?
Rating: 96% based on 987 ratings. 4,3 user reviews.
Author: Unknown
Thanks For Coming To My Blog
Rating: 96% based on 987 ratings. 4,3 user reviews.
Author: Unknown
Thanks For Coming To My Blog
No comments:
Post a Comment