Thankyou Eliot

Today on Oprah I watched a video of a mum and dad who did a blog for their pregnancy and baby called Eliot who had tris 18. Made me think of my blog and what I have written over the past 12 months of pregnancy and Noah life. So many days I ask myself why me? How come I had to have the baby with the disability? Why us? What did I do wrong? Some days I cant handle it I see other parents out there with the newborns and so happy buying things, showing off their new bundles and I sit back and think, why me? why wont my baby grow? Why does he look different? I don’t go shopping anymore I cant stand people seeing Noah. I hate the comments and the looks. I hate everyone saying he is so small or how old is he. When I say 4 months I get weird smiles or people just walk off like they regret asking. I have started lying now and saying he is just born that way everyone goos and gahs over him and I don’t have to explain what’s wrong. Then I feel bad that I need to lie. What mum lies about their precious child so she doesn’t feel hurt? A bad mum! A good mum would be proud of her son and his achievements and want to show off the baby who defeats all the odds. I hope one day I will be that mum. My mum says to me every time I call with new bad news ‘poor Noah’ I bite her head off this week saying NO POOR ME! He doesn’t know he is different he still gets love and cuddles and milk and milk and cuddles and more milk. He thinks life is pretty grand. I am the one who grieves for the baby I thought I was going to have. The 4th baby in the family, which translates to the one who gets tag along for the rest. Yet Noah doesn’t fit that description the whole family revolves around Noah and his needs. But today’s episode made me think of how selfish I have been every day is so special with Noah and I should be so proud of how far he has come, he has fought his whole life for each day to cuddle and love us, he doesn’t care about doctors or statics he just cares about love. I am so proud of him for tropping on he is my star. most of all I realized how proud I am of all the family for loving Noah and accepting him, none of the kids realize the extent of his limitations or needs. They don’t care, they don’t care he takes up all my time or that his needs are so important they just love him as their brother. How could I ask for better siblings for Noah than that? I am going to write a letter to all the kids and Noah and put it away for them. Thanking them for the love of the family and for helping us so much with Noah. When their older I want them to see the pics of how hard life has been for us all and know I was so proud even then of them. I want Noah to look back on his life and feel loved and special and proud of himself for fighting every day, so hard just to be with us. Eyes full of tears now. BBL to continue.

WOMBATS

To keep us positive we have decided to raise money for the organization that supports Noah's disability. Cando4kids (Townsend House Inc.) is South Australia’s oldest registered charity and is committed to creating a brighter future for disadvantaged kids. The mission to help change the lives of SA children who are Deaf and Blind and to help them reach their full potential. All services are provided free of charge and as the principle provider of charitable services to Deaf and Blind kids. And the wonderful organization were benefiting http://cando4kids.com.au/ * Every year they hold an annual fundraiser called the Amazing corporate race. The CanDo Amazing Race Corporate Challenge is a two day race in and around South Australia where 35 businesses will compete using a combination of brains and brawn to win the title as the ultimate team!

* So Geoff has sponsored the team and with Aaron and his 2 uncles they will compete to win the title as the best team. We need to raise $1500 to participate and $3000 so they don’t have to sleep in a tent. So far it is going really well and were getting lots of support. Check out the website to see how the Wombats are going. (wombats after Noah of course)

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www.theamazingrace.net.au/corporate

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Check up out on Facebook too

http://www.facebook.com/home.php?ref=home#/group.php?gid=135598381128&ref=ts

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This team is comprised of 4 men all related Little Noah. Highland Accounting is our corporate sponsor who is owned by Noah's grandfather and a team member. The team also comprises of his father, and 2 Great Uncles. Noah was diagnosed with Peters Anomaly and has been part of Cando4kids since he was born. This organization has helped Noah and all our family with great support and information not just for his vision impairment but also his other related illness. We decided to participate in Great Race Corporate Challenge to help raise funds and awareness for Cando4kids. We hope to gain from this some ‘warm and fuzzys’ and the knowledge were helping kids like Noah with vision impairment and hearing impairments and their families. We know with this we have fun and bond all knowing were doing it for our little wombat. *

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THE 2009 ANNUAL CHARITY EVENT

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The CanDo Amazing Race Corporate Challenge is a two day race in and around South Australia where 35 businesses will compete using a combination of brains and brawn to win the title as the ultimate team!

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YOU CAN HELP *

4 Strapping young men have decided to race to raise money and awareness for the organization that support their ‘little Noah’ with his vision impairment.

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The Father, The Grandfather and The 2 Uncles

have decided to join forces to win this race.

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THEY ARE THE

Need to put on weight NOW

August 14th Has been a few weeks since my last entry so much to catch up on. Firstly was my birthday on the 11th so nice to have all 4 kids in the house for my special day. The kids decorated a lovely cake for me and sang happy birthday while I was in the bath. Since last entry my back and hip has been very painful I have had chiro to help and it has helped a bit but still in lots of pain which is stopping me doing a real lot. * Noah hit 3kg this week which is a real special time for us. HE hasn’t had the tube put back in and breast feeding really well. We had an appointment on Friday with Haslam to discuss Noah's weight issues. According to his chart his head is normal size for his age, length is slightly small and weight is massively small. Haslam described Noah as the same as a 3rd world country baby. That pissed me off! He had only put on 200grams in 4 weeks and was extremely poor gain. The doctor stated that Noah does have Peter Anomaly and failure to thrive is part of the disability. He put him on the some special oil to help him put on weight. Were on a one week trail with a follow up next week. So far no increase this week with his weight. He also said he was concerned about Noah size of his head. Although it was normal for his corrected age is wasn’t in proportion so the head scan will be being put forward to make sure the cyst is not growing or causing swelling to the brain. Although he wants to wait as long as possible for the best comparison it will be moved forward. He stated Noah was going to small no matter what as past of PA. His limbs are short for his height and they weight with the oil or fortifiers then we will need growth hormones and steroids. Overall hoping Noah has a good weight gain this week will update after Noah appointment picked up the scans when I was pregnant. We looked on the PA website and average height for a man was just 4ft 7. and studies showed that the average life expectancy age was 24. So now we know Noah is likely to have Peters Plus were feelings pretty down. If Noah doesn’t put on Friday. He has his eyes needing testing this week too.

3kg Club!!

Noah has hit 3kg now. Yesterdays weight was 3000grams!! was a 40gram increase over 3 days. Is Aaron and my 1st Wedding Anniversary this week. So this weekend we went to Clare for Friday and Saturday Night. We stayed at the Country Club with the spa room. On Saturday we went to 6 different wineries and got 7 bottles of stunning red wines. I learnt so much about wine and wine tasting. We went to Seven Hill Neagle rock Annie lane Kilakloon Penna Lane Jeanneret next time will skip Kilakloon and Jeanneret they had expensive YUK wines. Is my birthday coming too will be 29 on the 11th. Got not much planned as the weekend away was our fun.

NOAH IN THE BATH