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.

Thursday, April 7, 2011

22-11-10

Hi all

Lior is doing well - a little flemy at the moment, so started nebulising him with saline and adrenailine again and giving him physio (which to my surprise he loves - falls asleep). The only problem is when he is so flemy he doesnt really keep his feeds down, but like the doc says as long as it is only a little and its the only way he gets it out, no problem. I started him on purity this weekend, gave him a little per mouth, although he battled a little he took it in his stride and swallowed (takes him a while though), he seemed to enjoy it - well the banana one at least, will have to see how he takes to the vegies - but he did let me know when he was tired and did not want to swallow any more, so gave him the rest via his feeding tube. Was quite a mission trying to feed him with a spoon cause with the cleft palet there really isnt anything for him to grip the spoon with so I figured out that I had to turn the spoon upside down and sort of scoop it off the spoon with his lower gum. Feeding the purity through the tube is confusing cause I have to dilute it with boiled water to ensure that it is thin enough to run through the tube, so in the end I am not sure if I am giving him enough, cause now the feed seems to be double with the water, so I try to ensure that he has half a bottle (small) of purity - I suppose it is enough for him, considering his milk feeds are only at 120ml - will slowyly start to increase it weekly. The only other thing that concerns me is that we have had to drop a bottle, so now instead of 5 he is only having 4 - been so long since we had a baby in the house, I cant remember all these things, and with Lior its just sooooooo different - we dont really know when he is full or when he has had enough or is still hungry, okay the hungry part we are getting a little better at figuring out, he tends to really suck my finger when he is, but he is also teething now so he sucks and bites my finger cause of that as well, at least we are giving him vydalin which also helps (just cant stand the smell of the stuff, sometimes I am glad we giive it to him thorugh the tube cause that stuff is just soooooo ugh !!! . He really is getting to be full of beans now. Loooooves his rattle, has a few bruises from konking himself on the head !! We have also been putting him in the walking ring more often and he is managing to move around a little, mostly out of frustration, but atleast he is trying - one step at a time, after all he is doing things we were told he never would.

I received an e-mail from taurus inc (the baby competition) to tell us that the babies with the least votes would again be taken out and Lior is still in !!! Considering I havent told anyone, besides daddy and the girls and besides my last post - I am really chuffed !!! All in all we had a good weekend, he has been sleeping well and been very cheerful !!

No comments:

Post a Comment