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, November 30, 2011

A .... MAZING !!!!

Morning precious angel.

Yesterday was your 19 month birthday - who would of thought, I mean after all the doctors only gave us a maximum of 18 months with you :-(   but here you are, happy, healthy (well as healthy as a trisomy baby can be) and full of life !! So HAPPY HAPPY HAPPY big boy - we love you loads !!!

We started you on solids - yes I know most people think what the heck, you should have been on solids long ago - and I agree, but with all the reflux and constipation problems it has caused a BIG problem and you just couldnt cope, so we had to wait until YOU decided your little body is ready. So now we put a spoon of porridge in each bottle - dont want to over do it and give you too much for now - and on Sunday we started giving you gem squash - mixed with butter (not so healthy for us, but a good one for you cause it will help you put on the weight you so desperately need) - all this liquidised and put through the tube and so far so good,  even your tummy decided to work on its own yesterday - poor daddy, a really big stinky one at that -I know how much he loves those :-). So maybe next week we can try some pumpkin or potato, will have to see.

We have also started trying to let you taste a little more by mouth and you seem to be a bit more patient. Normally its just a complete no go when we put something in your mouth but you seem to have developed a taste for RUM & RAISIN ICE-CREAM - of all things !!!!! but hey if you going to eat it who's complaining - definately not mommy. We have also tried candy floss, initially you dont like the fluffiness of it but as soon as it melts, well you dont complain either. Yoghurt - there you seem to be rather fussy, you dont really mind the strawberry flavour but dont really like it either - hard to explain and the berry, well lets no even go there. Ouma gave you some and it took daddy half an hour to settle you - you were not impressed. Zoo biscuits are also another favourite, you like to chomp on those, even though you dont have any teeth yet - maybe cause your gums are itching ...... (sigh) when are those toothies going to come.

Ouma has been very patient as well and getting you to drink about 20ml of water by mouth through out the day - not with a bottle though - we have to use a dropper and drip it into your mouth, but who cares at least it keeps your little mouth moist and helps with the thirst. That is one of the hardest things cause I never know if you are thirsty or not. Do you get thirsty even though your water and juice and feeds go down the tube?

You also seem to be sleeping really well lately - no more late nights for mommy :-) but it is also sad, cause now I dont really get to spend much time with you during the week. When I get home from work, its a quick bath, a feed and by the end of that you are ready for bed :-( and its not a bad thing, I just miss the bonding time we had before - even with all the frustration of no sleep, but what is best for you is what goes in our house !! So all in all lots of rest and a much happier baby - YAY !!!

We decided to take your mickey out and clean it on Monday and as usual mommy was a complete nervous wreck - you would think I am used to it by now. Your sisters were extremely nervous cause this was the first time that they were going to see clean it and they were expecting see this HUGE hole in your tummy - and they were quite pleasently surprised that it is a tiny hole and they COULDNT see the inside of your tummy - panic mechanics - look who is talking ... ha ha ha. Anyway my hands were shaking while I was cleaning your stoma and daddy was cleaning the mickey, but you just thought this was the funniest thing, maybe it was a bit ticklish - I dont know - but you were really having a good giggle - at least it all went well and we got it back in, no problem. Not that we ever have a problem, but I guess mommy just stresses that there is always a chance that we cant get it in and we were told that we have to do it within 10 minutes otherwise your stoma closes !!!

Saturday was a very sad day but also a very exciting day. Sad because our heavenly father came to fetch little Mia - another little T18 baby in Cape Town. Mia only lived for a few months but in her few months here she was a complete blessing to her mommy and daddy and to so many others. RIP in little Mia. I know you are dancing and rejoicing with all our other little T18 Angels.

Mommy has also  been thinking about aunty Taryn for a while now - I really must phone her. I know she misses little Miks so much. So aunty Tat, thinking of you  - always do - and sending you lots of love and hugs !!!

Saturday was also an exciting day, we got to meet aunty Gail. She has been following our blog for a while and we have been chatting, but never met. So saturday we met and wow what an awesome lady. Great to have met you Gail.

I guess that is all for now my precious little monkey. Mommy loves you lots and lots.

1 comment:

  1. Happy 19 months, sweet boy!!

    Miss chatting to you my friend!! Off on holiday... but will give you a shout when I get back so we can catch up :)

    Lots of love to you all xx

    Tat

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