Letters to Lior
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.
Friday, January 11, 2013
Christmas has come and gone yet again, except it was a very quiet one, just you, me and daddy. All your sisters were away and they missed you terribly and I think you missed them too. I think even for you the house was just way too quiet.
Before Christmas we managed to spend some time with your uncle Kevin in Durban and still I cannot believe how wonderfully your little body reacts to the Durban air. You always just seem to be so much healthier, you sleep better and just so full of lilfe - not that you arent always full of life - somehow it is just a little different. Our plans for the day would go entirely up to you and what time you decided to wake up and how resilient you would be for the day. Most days you would only wake up between 9 and 10, much to the girls dismay becasue all they wanted to do was get to the beach every morning. I wasnt complaining becasue for once we werent rushing to get anywhere - it was wonderful.
So this time at the beach there wasnt as much wind as there was in April and you were atleast able to play in the sand a little and dangle your feet in the water - only if you were sitting on daddy's lap - the second that little bum of yours touched the sand ........ well lets just say you were not happy. The only thing we really had to contend with was the heat and the light, the fact that you cannot regulate your body temperature and have photosensitivity, makes it a little difficult for you. So after about an hour or so on the beach you pretty much have had enough. We cannot complain, at least we are able to build those memories with you and experience these things that most people would consider normal and nothing really special.
Wow I cant believe another year is behind us - how time flies. On the one hand I am not complaining because you just seem to get bigger and better as time goes by and then on the other hand I just want time to stand still so I can have you with me for the time that a child is supposed to be with their parents :-( Anway not time to think about that, now its time to be happy. Its a new year which means a new start, healthy and happy and a time to move forward.
We have got you back onto solids again and so far so good - hold thumbs that it stays that way big boy - Then we have an appointment with an orthopeadic spinal surgeon later this month. NO we are not looking into operating, we are going to go and see the doctor about getting you a little back brace. We are not sure as yet if you will be able to get a back brace, but we are positive and holding thumbs that only good things can from our appointment. Now, I dont know Dr Sneakers but your peadiatrician does and he says that Dr Sneakers is one of those doctors who just prefers not to operate and that he will always look for alternative measures before having to go to the extreme, and when speaking to his receptionist, I told her that I really hope he can help us because you are still so little and have T18 and her response was well the doctor is used to dealing with really little syndrome babies - WOOOOHOOOO this gives mommy so much hope and positivity to know that his patients are small syndrome babies. So thumbs up !!! and you bet ya they are going to stay up !!
In any event, the plan is to get you a brace so that:
We can try to stop you scoliosis from worsening
We can try to strengthen your lower back and tummy muscles
We can teach you to sit by yourself
It is going to be a lot of hard work for both you and us - but hard work we are definately looking forward to. At the end of the day, as long as we know we have done the best for you and explored all our options and that you stay comfortable and happy - that is what matters most.
Love you my little peanut !!