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, December 6, 2012

Great news

Morning my previous little monkey

You have been home from hospital for about a week now and all is good, except for a little cramping here and there the last two days, but nothing major, actually its pretty much your normal. What we have figured out though, is if we make your first morning bottle a half strength bottle we have very little cramping and crying, and to keep you comfortable we do just that and you seem to be pretty much on the happy side with this and I say this cause you definately are not a morning person, you have to wake up in your own time otherwise you are a real little mr cranky pants,  and in the last few days you have not been woken up by any cramping and have actually woken up out of your own and been such a happy little boy, smiling, laughing and rolling from side to side ............... such a pleasure  (sigh)

Okay, so just before you came home from the hospital, your doctor decided he wanted to run some tests on your thyroid and I am so happy to say that your thyroid is functioning very well. When I spoke to your doctor, the one thing that he said was that if he had never met you and only looked at all the results of the tests that had been done in the last few days, he would never know that you are not a "normal" baby and well mommy's response was "well actually, he is a normal baby, he is OUR normal" !!! .... even though I was speaking to him over the phone,  and I know it sounds crazy to say this but, I could almost "hear" his smile on his face ..... oh how I love our doctor. We are so blessed to have such a compassionate and caring person who is only but happy to look after you.

Some more good news is that we have an appointment in January with an orthopeadic spinal surgeon so that he can assess your spine and hopefully make a brace for you, so that we can either slow down or stop the curvature of your spine ...... I dont really think it would straighten out your spine, well then again you never know, miracles do happen ...... I mean look at you :-) ..... Anyway, mommy is really excited to go see him and hear what he has to say and I do believe he will be more than willing to help you and keep you comfotrable, and once this is done, I am pretty sure we will be on the road to helping you to learn to sit by yourself............... wooohoooooo, I cant wait !!!!

We have also decided to take a break and go and visit your uncle Kevin (daddy's brother) in Natal because we know that the fresh air and just being a way will be so good for you ..... heck what am I saying it will be great for all of us, goodness knows we definately need it, it has been a long and tiring year. So we are going to take a long slow drive and unfoturnately going to have to leave in the middle of the night as this will be the most comfortable for you. Firstly because I can then keep your routine in giving meds and you will sleep most of the way and if you wake up the time you normally do, this should be pretty much around the time that we would arrive there. Secondly, it is too hot for you to travel during the day and being in a confined space and your little body not being able to regulate its temperature, this could be a complete nightmare and LASTLY, I dont have to listen to your sisters nagging, "are we there yet" cause they will most likely be sleeping themselves :-).

Anyway baby face, for now with this really rotten rainy weather, we are nebulising you twice a day and doing "soft" physio to try and keep your chest clear cause we can already notice the slight change and then we will go for a check up the day before we leave just to be comfortable that all is okay.

Thats all for now my little monkey.

Love you lots and lots