Letters to Lior: August 2012

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.

Monday, August 20, 2012

Playing catch up

Good morning my precious little pumpkin pie J

Its been a little while since mommy has written to you ... life has been a little hectic lately. Between work and your sisters dancing and sport I am not really getting time for much else so I am going to play a little catch up on your blog today.

You are doing great - although you have been a little chesty, nothing really major though. We took you to the doctor about a week ago just to see if all was ok and if your chest was as bad as it really sounded, but the doctor was happy. Yes you are extremely phlegmy but there is no wheezing and it hasnt attached itself to your lungs so there was no need for an antibiotic, just some pulmicort for Nebs and some quarterzone to try and stop the pleghm from producing even more. This has worked really well, but now for the last two days you havent been on the quarterzone and we seem to be back to square one again, so not quite sure what to do. I will call your paed again and find out what to do. Other than that all good.

Your sisters and daddy have been a bit on the sick side ...... okay not a bit, very much on the sick side and I am hoping and praying with all my might that you dont get it, cause I know it will be disastrous - you havent been sick for so long and we are trying to keep it that way

You seem to be getting another tooth (your second one), one of the bigger ones next to your eye tooth and I can see this is causing terrible discomfort, even though you are not miserable, but they way you pull your dummy in and out of your mouth rubbing it against your gums shows it is a little on the uncomfortable side for you. It has also caused you to have a really very runny tummy at times where we need to hydrate you and give you some questran to try and stop it - thank goodness every time it has worked. I suppose the fact that you are tube fed also helps - I dont have to fight with you to get liquids into your little body.

We have also taken you off of solids for a while now, because every time we seem to push with with the solids you seem to get more phlegm and more sickly, so only water and formula for you and to our surprise you have actually gained weight. Although still at a much slower than an average baby, but at a much more rapid rate than when we had you on solids. So a week ago you were weighing a whopping 7.5kg ...... AND you are now fitting into 12 to 18 month clothing .... such a big boy !!!

On another note - we are a little on the excited side, "uncle" Steven sent us a "stencil" to take imprints of your hands and feet ...... all the way from the UK .... and he is going to have the imprints mounted/engraved into a glass tile - I only sent them to him today, but we cant wait to see it .... it will have so much sentimental value to us - Thanks Steve. PS. we thinking of you and hoping and praying all is clear !!!!

Okay so a little bit on the frustrated side cause I so want to post some pictures but for some unknown reason the image icon has dissapeared and I cant find it any where. Sorry my little angel, I just dont know how to fix it .... maybe one day I will figure it out.

Thats all for now big boy - will blog again soon.

Love you so so much