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.

Friday, June 17, 2011

All sorts

Morning my baby angel - so this last week hasnt been too bad, although we have had a couple of sleepless nights and mommy at times just not being able to keep her eyes open. Literally falling asleep standing up !!!!

You seem to be a little on the pleghmy side again, thank goodness I have some pulmicort at home - been nebbing you with that twice a day and giving you physio and you seem to be a litte "clearer" this morning. Yesterday was particullarly iffy, you were very snotty and mizzy most of the day and with all the heaving through out the day, eventually at about 4 you managed to get out a huge amount of phlegm and were promptly better after that - having your normal cuddle with daddy and for a change getting excited with mommy !!! My heart did somersaults - for the first time I could visibly see your excitement, so much so that you very nearly threw yourslef right out of daddy's arms - the best thing ever !!!!!!

We decided to give you some sleep meds last night, cause you had a bit of an iffy day and decided that you, as well as us, were in much need of some sleep - and we had to change your freaking formula again. We are just at our wits end cause every formula you are on seems fine for the first few weeks and then ......... well ja. So the Similac has really started making you cramp but really badly - and we need to keep you comfortable - so going back to the lactose fee and daddy said that this morning you had no cramping - what a relief. Hopefully we dont have to change it again - but if we do Daddy and I though we should try the Novalc AC - especially for cramping and flatulance - okay I suppose everyone is wondering why we didnt use that ages ago - umm we only discovered that yesterday !!!!

So sleeping now - nice and peaceful - wish I could be home with you, daddy and the girls !!!
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