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 3, 2011

Weekend Celebration

Wow what a busy weekend, parties parties parties. Friday was a very special day - it was your 1st Birthday !!!!! Aunty Teressa decided to have a little get together for you at mommies work, and it was really special. Mommy works with such fantastic people, who are always so supportive and caring.
Mommies boss, Aunty Tersia even sent me home early so I could spend some more time with you - such special people, just love them to bits. Friday night you went down quite easily, but did not sleep that well, you were very niggly - waking almost every hour

Saturday we had a good day, we went for breakfast and did some shopping and you just love the mall, so much to see, but were really pooped by the time we got home. Saturday night mommy and daddy went for dinner with grampa to celebrate his 60th birthday and it really broke my heart to leave you at home, but I just couldnt take a chance and take you out in the cold, and grampa thought it would be good for mommy and daddy to get out a bit. We had a lovely evening, but not without thinking/worrying about you. ( it was a really long three hours or so, not because we didnt enjoy ourselves cause we did, jut the longest I have been away from you - besides work) When we got home you just woke up from a little nap and didnt battle to go down again, but you were very restless again, so hardly any sleep for mommy and daddy.

Sunday was a great day - we had your birthday party - although you were a little niggly in the beginning, eventually mommy figured out that you were just getting too hot. Once we sorted that out, well, no-one could stop you. You were passed round like a little parcel and had a good chat with everyone, even got to cuddle with your uncle and your niece and had no problems when she decided to grab hold of your hair and not let go - was quite cute actually.  Eventually you fell asleep but we had to wake you so we could cut your cake and sing to you, although you didnt moan, I dont think you were too impressed about being woken up. Daddy said a few lovely words to the family, to thank them for all their love and support, but then I think it just got a bit too emotional for him when he looked down and saw mommy crying  - tears of joy cause you exceeded everyone's expectations, but also tears of sadness cause I dont know how many more days/weeks/years we will have with you, but like daddy said, we have gotten this far, so now onwards. Anyway we got lots of pics and mommy wants to say a very big thank you to aunty Tich and uncle Leon for your cake - it was so gorgeous and sooooo yummy - just wish you could have eaten some. (tears again) and then thanks to all the family for being there, for their love and support and generosity - we love you all.

I think grampa had a bit of an emotional moment, cause daddy asked him to make a song for his video that he is busy with - and we all know grampa with music - just loves it and sings to anyone and everyone - everything and anything is his audience. I think it was just a very proud moment for grampa being asked to do something so meaningful and special - he even gave daddy a hug ~!!!! All in all it was a great day and I think everyone enjoyed it, you more than anything cause you passed out just after 6, but not for long, once again a niggly night and very little sleep. Mommy is a bit of a walking zombie right now because of lack of sleep, but we just cant seem to figure out what is bothering you, cause whatever it is, its only at night. Maybe we will have to take you to the doctor and find out what is what.

Its your sister Toni's birthday today and she is the big 12 - jip one more year to go and she is in her teens and not her tweens !!! She was ever so excited cause this is the first time that she could have a cellphone (her daddy gave her one) - yes mommy is very strict - they are only allowed one from the age of 12. So she has been waiting for this forever !!! - so Happy birthday to mommies big girl - love you lots my angel, I am so glad you get to have your birthday with your brother.

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