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.

Tuesday, May 31, 2011

Back home .....

Wow what a week my little munchkin ..... Last Thursday you came home from the hospital all chipper and talkative - in the best mood ever, but thinking back now I think you were actually shouting as us and trying to tell us something. That evening you really didnt want to sleep, we battled and battled and battled, daddy eventually got you down at 03:00 am and by half past 6 you were awake AGAIN !! - I just dont know how your little body does it. A little while later daddy phoned me and told me you were just crying and crying and crying and that the Mic Key was leaking and that you had been vomitting a bit - which you shouldnt be able to do with having had the nissan, your head felt like it was on fire and the rest of your body was ice cold, now normally your head always feels a little hot and your hands and feet are like ice blocks, so it didnt really send off any alarm bells, but daddy decided to take you to the doctor anyway, to my dismay and horror daddy phoned and said we would have to go back to hospital cause it is probably pnuemonia. Mommy left work straight away and rushed home (think I got a few speeding fines on the way) ..... never have I seen my precious little boy look the way you did .... not even after all your operations. Daddy and I took you to the hospital and we were both very emotional - or lets say mommy was emotional and crying and daddy once again held back to keep strong for mommy ..... our hearts were breaking cause we just did not know what to do. I was stressed beyond measures and couldnt possibly imaging how daddy was feelinng cause he had been with you the whole day in the state you were in - we were and felt so helpless. No position that we put you in eased your pain, your sats were low and your heart rate was over 200 !!!!! Needless to say this scared the living daylights out of mommy and daddy - I was so scared that your little heart was going to give in any second. At times I thought God please please dont let my little boy suffer - if you have to ..... take him, but whatever you do, dont let him be in pain and suffer.

So back in hospital and still not settling, eventually after a whole lot of pain meds and close to midnight you fell asleep - something your little body so desperately needed - after all you only had basically 4 hours sleep from Thursday morning uptil you fell asleep at midnight on Friday. Your x-rays came back clear and it was such a relief for us, but we still did not know what was wrong. Eventually we thought maybe you have an infection in the Mic-Key - and boy what and infection it was - took almost 5 days of intravenous antibiotics and lots of cream with antibiotics in it to settle the infection - still a little inflamed but so so much better. Hilda came to have a look yesterday and said all was good. Mommy phoned the doctor and he was happy and asked when we wanted to go home ................. ummm let me think ....... TODAY WOULD BE NICE !!!!! So we went home last night and for the first time in almost a week you had a relatively good nights rest, but daddy had to sleep in the lounge cause he is not so well  - umm lets reprhase that, he is as sick as a dog !!! But at least we all got a little more sleep last night.

Daddy and I were talking yesterday and decided that we just need to get over ourselves, before we never had an issue when you had one of your spells, we dealt with it and carried on ..... but now cause of last week when we had to rescuscitate you, I think we are just both petrified, this last week in hospital everytime you had a little spell we went screaming through the passage shouting for oxygen and suction - I guess we are also just human and panic a little - its been a hard knock for us, but we will pick ourselves up and carry on !!

Love you lots little Monkey !!

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