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.

Wednesday, July 20, 2011

Not so great weekend

Morning my angel - This weekend just passed was not too fantastic - I think I should just stop bragging when you are doing so well - think I just jinx it for you. You were totally and utterly miserable on Friday and Saturday, although having given you some sleeping meds you did sleep well through the night, but during the day ...... just plain miserable. I think maybe you are teething, your gums are so white but still nothing, snotty nose, but no runny tummy ..... so hard to say what could be wrong. The solid sleep in the evenings definately helped cause you were a lot better by Sunday and just wanting to play, jump and shout the whole day - was so good to see you happy and not mizzy

Saturday morning was a bit nerve wracking for mommy and daddy, we had to take your mickey out and clean it and this is the first time that we have done it ourselves (the rep did it previously and I only watched) - we were so scared that if we took it out we wouldnt be able to get it back in. We have been warned that we only have ten minutes and then the hole (stoma) will start closing  ..... not exactly what we want to hear, so to save time, daddy cleaned the mickey and I cleaned the stoma and whala we got it back in. Now while we were doing all of this my hands were very sturdy, but the second daddy got the mickey back in I kind of fell to pieces - couldnt stop my hands from shaking and feeling totally and uterlly dranined - What adrenlaine does to a person - quite scary really. I think daddy was expecting to see this huge hole in your tummy and be able to see inside (sort of what I expected until I saw it for the first time), but glad to say that it is not. I am also happy to report it all went well and definately not looking forward to having to do it next month again !!! But I guess as time goes we will get used to it and it will become normal - a new normal.

Okay so mommy's immune system has finally given into the flu so feeling really rotten at the moment, and thank goodness for daddy who has been absolutely wonderful in taking care of you in the evenings when I should be doing it but now I think I am making daddy sick as well - never ends. 

You were really really miserable this morning, didnt keep your feed down and brought up a lot of bile and really battled to recover. I just hope and pray that you are not getting sick again.

Sending you lots of love and plenty of hugs and kisses may little nunu - see you later
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