April 20th 2010
I cant believe tomorrow my man by turns 1, the little hairy, skinny wombat who changed every bodies life he comes into contact with. I cant believe 12 months ago I was in labour and getting ready to have a baby. So much has happened in the past 12 months. So many good times and so many bad. For us has been 18 months of crap time. Were hoping tomorrow is the start of a new year and new life. Noah will be 1. What a goal to get too. What a goal for me to get too without loosing my mind. When I reflect on the time I think of seeing him in that humid crib in SCBU 3 and how he was so tiny and so many cords on such a tiny child. I remember the hours sitting by the crib in the hospital. Meeting so many other people and their babies and their journeys and how now they are so rude Noah isn’t allowed to attend their playgroup cause he isn’t suited. Bitch! I remember the call from the NICU nurse saying Noah had stopped breathing and needed to go back on CPAP. Was a horrid day for us even worse when friends who baby was born after Noah came over with their baby. Aaron had a tutty frutty at them how could they bring their baby over when mine was in hospital struggling to live. I don’t think they will ever know that pain, but they do have a cute girl so made it easier it wasn’t a boy. I remember coming home with Noah. I refused to take photos cause I didn’t want to see the horrid feeling I had as a failure of him being away from me for 5 weeks. He was so tiny all his clothes were so huge. Was just the day before we left hospital we found out he had corneas which were not developed. We were told her had Peters Anomaly and he would be vision impaired. Was very hard to hear and took lots to get use too especially cause we could see his white eyes. But he was so perfect even tho he was so small and his eyes so imperfect. We were so lucky he was alive, we hated the tube in his nose and looked forward to showing him off like a normal baby. We would take him to the shops and die for someone to comment on him being cute not asking about the tube or his size. At this time a friend told me about Can do 4 kids an organization for VIP kids. Was great we sorced sponsorship for a fundrasiser and met Julie from Wendys. She was the only one who looked at him as a beautiful baby not a freak. He wasn’t even 2kg and she treated him like a grandson. At home we had so much fun watching him grunt and sleep. Was so special when he finally breastfed. I was pumping, breastfeeding and gavaging him every 3 hours. Was so exhausting especially as the other kids were home too Rachel was school and Jake was at child care. Noah was slow to develop and we ended up requesting more tests the found then he had more issues with his heart, brain and growth they ended up diagnosing him with Peter Plus a rare disorder with bad outcomes. Was hard to deal with especially as we saw Noah starting to develop he was feeding without the breast shield and starting to smile. We were so proud we stopped looking at him for his developmental delays but for who he was. We were so proud for each milestone. After this I started to notice my back was causing so much pain. Ended up being I had severe sciatica and needed surgery in Feb 09 and then again in March wasn’t the ideal situation and has bad side effects. Noah started to crawl and stand up by Christmas was such a goal as the brain scan showed he might have issues with his motor skills. His fine motor skills are still not fantastic but that could be from his eyes too. The anomaly started to shrink from the start and has now almost totally gone. Although his eyes look so normal he still does the freaky eyes to look over the top. Shocking for us, he can pick up a small item on the floor even find an ant but then crawls into things constantly. We wont know the degree of his loss till he is older. When Noah was 6 months old his NG tube came out was a great day for us no more pumping and no more gavage feeds. Best bit was he looked normal. We were so proud. From there he came in leaps in bounds moving around the room and interacting with us. At this time Aaron, Geoff, Mike and Paul competed in a fundraiser and raised money for Noah's charity. They met so many wonderful people. Although wasn’t the best time for me at home with Noah and alone they did have fun. In November 09 Keeley came to live with us full time. I wont go into details as is legal but since then our family has been complete.
So today we sit here and remember the wonderful people who we have met and have helped us. People we never knew existed have becomes our friends. We have met other special needs children and came accept the differences of everyone and be so proud for everything. Although the year has been tough didn’t mention the car breaking at costing $6000 and the TV catching on fire nor did I mention the TV we got for Xmas or the grants we have had from charities to help us. So has been a hard year but over all we are happy and so proud of out little Man. He may not ever grow but he is our a fighting wombat
Physio chair trying to learn to sit!
Dads little man
Sorry to take so long to update I had spinal surgery this month and Keeley has been having some issues. Hope to update for for you soon
Noah with Olivia (11 weeks) his God sister
