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

07-10-2010

So i spoke to the supplier of the feeding tubes and he wants to charge me more for the tubes than what the hospital charges - here is the funny thing - the hospital orders the tubes from them and I get them cheaper from the hospital - how does that work - Isn't the supplier supposed to be cheaper?? In any event he told me that they will be discontinuing the tube I use for Lior so have now ordered 5 tubes - thats all they have, not sure what is going to happen after that. We dont want to have to go back to the 3 daily tube - just too traumatic for all of us. I am proud to say Lior has been trying very hard with the bottle and have found that our little boy cant stand the taste of anything sweet we have tried all the purity juices and he just gags when he tastes them - wish I could be like that !! Our hope is that he will be able to drink a full bottle and that we will be able to remove the tube, we are hoping that his little heart will allow for this, he gets tired very quickly when he drinks the bottle - but yet there are days where he will stay awake and play the whole day! Last night was not the best experience though, after letting Lior drink from the bottle I was winding him and he brought up a wind, but also some milk/flem at the same time causing him not to be able to breath, he went completely blue, was thrashing about cause he could not get any air and then just promptly went limp - My heart went straight to my toes and I panicked quitely, I gave him a smack on his back, a little harder than I normally would and he seemed to get some air, got his colour back and then went as white as a ghost, it took a lot out of our little munchkin, this pretty much put me on a downer for the rest of the evening. I decided to get into bed early with Lior and not wait until his late feed, and as wonderful as my hubby is, he did the late feed and let me get some rest, - just love you to bits my angel !! Just really on the tired side today, think its cause I had more sleep than normal, but probably cause of all the emotion that went through my head last night as well. One doesnt realise how draining emotional strain can be. We are blessed to have another day with our little angel and his light continues to shine for all of us. May God continue to let your little light shine !!
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