Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Tuesday, May 10, 2011

Surprised ???

Hey little nunu - so daddy took you to the doctor yesterday and ....... mommy was right. You have a middle ear infection, no wonder you have been mizzies for a couple of days. Daddy got your meds and we are hoping it will clear quickly. The best is, your chest is clear - I was so worried about that, with the change of season and it now getting really cold and with you having had a little cough, whew what a relief.

Yay yay yay- you have finally put on some more weight, you are now weighing 6kg and growing out your clothes like a little bean stalk. I put a babygro on you the other night which you wore a few days before and it just didnt fit you any more ..... it seems you have these little spurts and grow like crazy.

The doctor was so suprised yesterday, daddy said when he touched your ear you had an immediate reflex reaction to push his hand away and the doctor couldnt believe it. He looked at you and said "you are not supposed to be doing such things", then after your check up daddy put you in your chair and you were chatting away, also suprising the doctor to no end. He looked at you again and said, "stop it, you are not supposed to be doing these things" .... obviously in a joking and surprised way, and when daddy told him you had just turned one, I think he nearly fell over - so kudus to you my boy, showing everyone up - ha, just love it !!!! and then he told daddy you need a haircut .... GRRRRRRRR (thats mommy growling by the way - I dont want to cut your hair)

When I got home from work, you had a HUGE conversation with me, I think you were telling me everything the doctor said and what he did to you and then almost as if you thought I was not understanding you or listening to you (ok I was busy giving you lots of kisses) you just gave out one big scream as if to say MOM WILL YOU LISTEN TO WHAT I AM SAYING  ....... Just too cute for words.

You were a little mizzies last night again and when daddy fed you at 12, some brown stuff came up your tube, but I think it is just from the coughing and loosening things, mmmm, will have to keep an eye on that. The one thing that does concern me though is yesterday when Tan was holding you, she said you brought up a little, which was one big surprise cause with you having had the nissan, you should not be able to vomit, although Tan said it was not a lot, probably a wind, it does worry mommy that the tummy is now coming loose and that we will be back to square one with you not keeping feeds down. Daddy is taking you to the surgeon tomorrow, so lets see what he has to say. One thing I do know is that I as sure as heck aint going to have you put under again to repair it -  NOOOOOO WAY !!!!

All in all my little munchkin, you are doing well and showing us all how great your are and how great our father above is.

Loving you more and more each day my little sweet pea
Posted by at

1 comment:

  1. KulaniMay 10, 2011 at 2:01 PM

    Hi handsome,I am glad that you are suprising all,you are a true blessing and I know your family are happy to have such an amazing child like you.God will use you to bring glory to His kingdom cause He works in mysterious ways.May that cold live your body*hugs to you and your family*

    ReplyDelete

Subscribe to: Post Comments (Atom)