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.

Friday, October 26, 2012

So much better

Hey hey my little scadaddle  :-)

So as Murphy would have it, after I brag to everyone about how well you are doing, things go downhill.

A little more than two weeks ago on the Saturday you werent feeling too great so we started you on your emergency stock of antibiotic that your doctor keeps on script at the pharmacy just in case he is away. By Sunday you were feeling much better and back to your normal chirpy and bubbly self, so I felt comfortable with going to work on Monday morning, BUT an hour later when I got to work and had just parked in the basement, I got a call to say that you were battling to breath. So I quickly phoned daddy and we both rushed home as quickly as possible to get to you.  Although I think it seriously was a blob of phlegm that was stuck in your throat because as soon as I got home we took you to the doctor .... and yes again when your nornal paediatrician was away, so we saw his dad and whilst sitting there you decided to just spew it out in the doctors rooms ..... well I guess its nothing they havent seen before .... but after that you were perfectly fine. Anyway Dr R Senior actually told us that he could not improve on any of the medication that we were giving you so off we went back home. I didnt want to take any chances so I stayed home to keep an eye on you and you had a relatrively good day with a few grumpy spells here and there but nothing seroious, well at least up until about 22h00 that evening. You suddenly just started coughing and coughing and coughing and it really sounded like a terribly painful cough and needless to say neither you, me or daddy really got any sleep. So knowing that your regular doctor would be back in the morning we decided to take you back to see him and yes you guessed it, the prognosis was not so great ..... Pnuemonia. So our 8 months of no hospital came to an end.

We quickly rushed home to pack your bags so that we could get you admitted and on the road to recovery. The admission really is the biggest pain in the butt and just seems to take forever. So we decided to take you up to the ward as the nurses knew you were coming and I gave them strict instructions to give you veleron drops about 10-20 minutes before they even attemtped putting in a drip. So off mommy went to get all the admission papers done while ouma and daddy and stayed with you. Only to get upstairs and realise that you were in the room with the nurses putting up the drip and that daddy did not go in with you. I was not impressed. You see, normally mommy would NEVER leave you alone with the nurses, and not because I dont trust them, but because I know what to look for when you are crying and going to stop breathing. In any event I barged into the room just to find you laying on the bed completely relaxed like a little old man with one leg over the other and having a HUGE conversation with the nurses. NO crying whatsoever AND they managed to get the drip in your hand and not your head for a change - how awesome is that . Well for us and for you it is :)

Anyway your doctor ran blood tests and mucous tests and ordered serious physio for the next five days. Jip once again 5 days in hospital. The good news was that all your tests for the RS Virus and others came back negative, the bad news was that it was really a normal common cold that had got you to pnuemonua litterally over night.  I can say that although you werent severely miserable and crying, you wanted nothing but to be in my arms 24/7. Now as little and as light as your are, afer a few hours you are pretty damn heavy. I would eventually get you to sleep and the second I tried to put you down you would scream blue murder, not once, not twice, but EVERY SNGLE TIME !! But as tiring and sometimes as frustrating and draining as it is, I would never change it for the world.

Since then we are home and you have recovered well. I am only hoping that with this really iffy rainy, stormy wet and windy weather that your chest will stay well .... so far so good and holding my thumbs ever so tight ..... okay okay begging God to keep it that way :-)

Mommy is ever so grateful that all is better and on track again.

Love you so so much my little angel pie  

Thursday, October 4, 2012

Happy days

 Good morning my little angel pie :-)

For some reason I am missing you terribly today and a little on the tearful side, not sure why because you have been really well lately, except for a little cramping after feeds, but otherwise we really have no complaints. I mean you are back to sleeping in your cot after a loooong time of sleeping in bed with mommy and kicking me every night, and as little as you are you kick pretty damn hard.

For the last week you have slept really really well ..... either that or mommy is just too pooped and not hearing you at night ...... nah ...... I think I will give you the credit and put it down to you sleeping really well

I know I have said before that you have come out of your shell a little but you have come out some more and are ever so vocal about everything. You smile and play so much more and seem to have so much energy and even your excitement is so much more visible. You have learnt to get your body moving - almost in a jumping motion when you are excited and let out a yelp at the same time. 

You have also seemed to learn how to pose for the camera, not quite sure where you learnt that from ..... oh wait, WHAT am I saying, you could only have learnt that from your sisters. They just looooooove taking photos of themselves posing and pouting ..... teenagers, what can I say

With your sisters on school holiday you are just loving all the attention that they give you, learning to draw, playing on your play gym and reading your book. lots and lots of cuddles for you, and you have even been playing with the cat - who seems to just want to cuddle with you lately as well, AND having a little bit of ice-cream.

The other day mommy decided to stop in at the baby store to see if I could get your nappies there and whilst I was taking my time looking at everything BUT nappies  :-)  daddy was having a gawk around and found a pair of sunglasses that fit you. This kind of thing may seem so trivial and such a silly thing for some people but for us it is a REALLY REALLY big thing.

Now we can actually hang out in the garden a bit and you can open your eyes outside for a change. Your photo sensitivity is so bad that even when the sun is really bright and shining in the house your little eyes go red and you are not able to cope too well.

On another note, for the first time the other day, daddy took you the barber and they shaved all of your hair off. Now you look like a real little boy - lets say ouma was not too impressed but hey, as long as you are comfortable and cool, that is what matters for us. 

 I mean we really dont want a little Mr cranky pants because he is getting too hot and yes ....  it is VERY scary how the weather affects you ..... especially when it is raining and miserable outside, cause then your mood is pretty much the same ............ plain miserable, so much so that the cat even wants to cuddle with you because she thinks you are terribly sick and in the mean time it is just the weather.
Well my little honey bunny thats pretty much all for now. By the grace of God, I wish you .... and us .... many many more "HAPPY DAYS" !!!!

Love you pumpking pie