2010 – What a year has gone already?
How to begin?? 2009 changed to 2010 as usual with Aaron and I skinny dipping in the pool on a hot new year eve and discussion, tears and laughs about the hard times in 2009 .
2009 Noah was born prem. In the year he had some real hurdles to get over but by Xmas was his naso gastric tube was off and he was weighing 5kg. We said a prayer last new years for Noah to have a better year.
2010 Noah started the year saying goodbye to Prof Haslam the head and best neonatal Dr ever. We then met Dr Conway a great pediatrician who was out to find what was wrong and how we could give Noah the best life. Noah learnt to laugh this year and crawl, two major milestones for him. In April Noah attending his 1st ANZAC day march on behalf on his great great Grandfather Charlie, who he was named after. A man we would never meet but put his family first and inspired Aaron to become the man he is. Charlie deserves a lot of credit and I hope one day we find his remains. Noah then turned 1 although no idea what was going on the kids really enjoyed pampering him for his special day. At this time he was using an aid to learnt to sit and by October could sit by himself.
25th of May was a 1 year anniversary since Noah left SCBU and came home, we celebrated the day but also mourned as we found out his brain injury was much worse than we thought. In June Noah took his first steps with a walker and although still doesn’t walk can scoot around mighty fast with his bear crawl. In September Noah has his first operation on his eyes. Surgery was not a success and will need more later we also found out he doesn’t cope with anesthetics very well and needed resuscitation. He also began to wear a patch on his good eye to help the bad one. So far he is still legally blind but I think they are wrong.
In October Noah had a sleep study which showed he is not a good breather, and was put on oxygen in November with another admission. Hopefully 2011 surgery will help this and he wont need it anymore. 2011 has some more hurdles for Noah. He has surgery due in May and will need some horrible studies done with his brain, heart and endocrine system. Noah has brought us so much joy, he is so happy and so happy to be with us. He loves the other kids so much and is very rough back to them. He may be the youngest but he fights like the eldest. We pray 2011 is the year of great accomplishments for Noah.
Keeley turned 4 this year. Last new years we sat here crying for our baby girl who was sexually assaulted and was abandoned by her mother. After 6 months she finally met her mother again but still doesn’t have a solid relationship with her. In July Keeley sex offenders chargers were dropped due to her age. Not only did this kill us it meant he could come back to her life. We dread every day she isn’t with us in fear of her well being. Keeley started Kindy in term 3 and has done remarkable well. She has new friends and not reliant on Jake anymore to be in a social setting. Keeley also began ballet with Rachel on Monday afternoon and although a bit of clutx is going very well and has learnt to click with both hands. Keeley also began to find herself as an obnouiox, stubborn child, everything we have wanted for her. Just like her step mummy. Term 3 will mean Keeley starts school with Jake and Rach she is so excited and more than ready to tackle the real world. Is such a proud moment as it was us who made her this confident, special child. 2011 will be the year for Keeley to shine, Aarons squid and my Bubby has the whole world ahead of her and we wont let anything stop her again.
Jacob turned 5 this year. OMG where did the time go? January he had surgery and grommets back in his ears this helped his behaviors and hearing hugely. I am so grateful as he is such a clever boy. Jacob also learnt early this year about cooking, this is his new found love and he spends every day in the kitchen with Aaron being a sous (master) chef. He is the taste tester of the family and is cooking dinner for us. This has helped him so much find his special thing. He has livid in Rachel’s shadow for so long he is now his own man. This has meant his confidence is souring. This has also improved onto his relationship with Noah. He treats him as every brother but still the protective big bro. Jacob also excelled in kindy, his teacher put him down as the most improved and most changed. He ended up not needing the special care hearing session and went into main stream kindy. Jacob is due to start school 2011 in January he is so excited and going to do so well. We know Jacob will have a good year he is such a energetic boy and his new found passion for cooking will continue to bloom. 2011 he will need more surgery on his ears but with the last surgery going so well we can see it will improve his life dramatically.
Rachel has had a great year in year 1. She is reading at early year 3 level and writing at year 2 level. Her schooling is very important and she hopes to be a fashion designer and writer when she is older. Rachel struggled in 2009 and 2010 with me and Noah being away so much but has overcome this with her counseling and love for Dex the guinea pig. Her turning 7 in May changed her so much as she continued to ask more questions about puberty and unfairness of it all. She has decided she would like a baby when she is 25 and it will be a girl so she doesn’t have to deal with boys bits. She is very in love with Keeley and her and Keeley spend all there time together, they even have a special girls secret club but I don’t know anything about that. Rachel saved up $80 and bought her first fish tank with 5 fish called Chloe. Although 1 chloe did die, She was very proud and we were proud of her. She started Ballet in July and has been to a few sessions she is very good with remembering steps and we hope the teacher is better from her illness next year. 2011 is a hard year for Rachel with year 2 she has found friendship groups and female bitchiness an issue already and hope the avoid it next year. We have high expectations for Rachel as any we have had in the past she has exceeded with flying colours.
Aarons year has been stagnant has been about making sure the rest of the family is ok. With a year of me being in hospital and Noah's sickness he has been there to keep everyone going. His lawn mowing venture has taken off and been great for his time out. Although a hiccup with him feeling useless and not helping especially with Keeley trial he got some great help from family and continued to get back on the band wagon with his constant positive attitude. I cannot thank him enough as my kids support and my back bone he has made this family function without anyone else. This year he got his bird and an aviary. With a sad end to the first lots of eggs he has build his own breeding box and looks after them like kids. They are his special love and has tamed a budgie which now lives on his sholder. Aaron is our backbone and the only thing that keeps me going during the horrid times. Aaron has had the most boring year but is the only one that got us thru this. I don’t think he will ever understand how special and great he is as a husband and father
I have also been stagnate in 2010. I have spent the year with midnight feeds and sitting up worrying. After Noah's birth I destroyed my L5 disc in my back and in April I went into my 1st surgery to fix it. Thanks to Aaron and making sure the kids were ok and bringing Noah in for all feeds I got thru my days there. I struggled to recover and ended up in surgery again where I found out I have nerve damage around my spinal cord, this left me with no feeling in my left foot and leg and unaware when I need to got the loo. With many days per weeks with Hampstead Rehab center and PARAQUAD helping me to relearn how to walk, drive, recognizing signs. I am happy to say now I am feeling much better then pain is not as bad and the rehab has helped me be independent again. In October we got our first guinea pig, the guinea pigs are my time out and I have made them all a haven of hutches and things to do. We have adopted 3 now and hope for 1 more a texel I hope. I am also hoping to work with the network to re home unwanted and try and help others learn about them. 2011 I would love to go back to work. My issue is my pain in the back and leg from the surgery. I have struggled with not working and pray I can go back and help us out financially and also make me feel like I have a purpose.
For our family 2010 was a good year full of surprise and many more tears. We have done it alone and Aaron and I have become so much stronger due to it. Were praying for 2011 to be the year of hope, success and some improvement in all areas.
We want to thank the friend and family who have been there to help us thru so many ups and downs of our lives. We cannot thank everyone enough for the support.
Special thanks do need to be mentioned as you have done something that saved us in one way or another
Family: Mum and Dad did so much from even being far away and only here for short bursts and I am looking forward to them coming home for good so we can buy them a coffee and express our thanks in person.
Nan, Tess and Edmonson family you’re the most giving loving people so happy to have you in our lives. Thanks so much for being there thru everything.
Dad and Marion special thanks xxx. You were brilliant being there for Aaron especially during the really hard times of Keeley saga without that support thru such a rough stage we would have been lost.
Kate and Todd thanks for all the chats was a great way for me to calm down and have a laugh we wish you all the best with peanut and cant wait to meet him/her and celebrate.
Friend: A Special thanks go to Ma the staff at WCH café for the constant support and food for the times were in there. Makes such a difference knowing a smiling face is there who really does care.
Also to my internet friends with special needs kids especially the PSS mob around the world and Kimberlee and Karina, your support is so important and means so much and I wish all the special care kids a great 2011.
I also want to mention to our special friends who are there no matter what. Without this we would be lost especially Michelle for helping so much with Noah when I was in surgery. Your boobs are brilliant :D and Sammy I know you were paid to be our nanny but your love and friendship of the mine and he kids made such a horrid time much better.
I know there are millions of other people to individually mention but I want to post this before 2012. So a quick list off the top of my head= Kat, Jamies, James, Sarah, Bekkie, Liam, Ryan and Tanya.
So happy new years and I hope 2011 is a great year for everyone and a great year for us
Love
Kristin, Aaron, Rachel, Jacob, Keeley and Noah
glitter-graphics.com
We were notified by Dr Kennedy that Noah's sleep study came back really poor and would need to be admitted in to go on oxygen while sleeping.
We were admitted in to Med 3 in a bay with 2 other older patients in for diabetes. We had no TV and the bed was so lumpy. I warned the other patients and the staff Noah was difficult to put to sleep, wish they have listened. At 6pm Aaron and the kids came with the mini DVD player for me (how sweet) and we have dinner down at the cafe. Was a nice break to a horrid admission. The specs went on a 7pm and Noah struggled really bad with the nasal specs with them on. He kept removing them or screaming. At midnight an oxygen sats machine was poped on the the O2 removed because he was keeping everyone up! TOLD YOU SO! I watched all night the sats machine and no real movement even without O2. In the morning the alarm went off and his sats were 81% WTF? it was suppose to go off if under 95% stupid nurse had set it up wrong. Dr Kennedy came round in the morning and organised for the oxygen to be delivered to the house and the resp nurse to come and give up a session on how to use it. they also made plans for an ECG as his heart rate was unusal and lack of oxygen can cause heart failure. We had our info session and midday and then waited. ECG was done at 4pm and showed slight weakness of the valve but now he has to oxygen it should correct itself. ENT came down at 5 to talk about his surgery. They want him to have a hearing test first to see if his lack of speech is due to hearing loss. If so they will pop in grommets too. I got home last the next night. Was exhausted and happy it was all over!
