My cerebral palsy was hurting me tonight,
so I had a lot of trouble falling asleep.
Sometimes that happens.
Its bad for Mum and Dad, too,
because I don't have the words to tell them where it hurts.
I'm asleep now. xx
Hi guys.
My cerebral palsy was hurting me tonight, so I had a lot of trouble falling asleep. Sometimes that happens. Its bad for Mum and Dad, too, because I don't have the words to tell them where it hurts. I'm asleep now. xx I'm about half way through my time in my purple casts. I can't wait for them to come off! They are heavy, and hot. And, every time I hear the bath water being run for my sister, I stop and listen. I miss the bath! My cerebral palsy was hurting me tonight, and I was crying. That's hard for my Mum and Dad, because they can't do much to help me. And, with my casts, we can't even have a proper cuddle. Never mind. They'll be off soon. xx Our Relay for Life Launch is this weekend.
The local fibre glass cow is painted purple. Hopefully, everyone will be in the street, wearing purple shirts and getting excited about Relay! There might even be a few people with relay torches, relaying up the main street! Sounds like fun. Read more about it in the Kiama Independent's article here. From the article: After a record-breaking year in 2013, the Kiama Relay for Life is back. The 2014 relay will be launched this Saturday. This year's event will take place on May 3-4. Last year's relay raised a record $136,000, with Team Roberts raising $15,201 - the most of any team in the Kiama relay's four-year history. Cancer Council research and support programs received the proceeds. The launch will feature a street stall at the corner of Shoalhaven and Terralong streets from 10am-2pm. Committee members will be under their marquee, decked out in their yellow and purple shirts. A decorated truck with loudspeakers will be doing laps, while a few committee members are planning a "Relay run/walk" up to Kiama Village, complete with Olympic-style relay torches.
So, what's so special about a Floor Surfer? The Floor Surfer is a roller board for play and therapy. I can use it to play and it will help me learn to really use my arms! It's made of plastic and foam, so it's strong and comfortable. My sister will probably be able to push me around on this, so we will be able to play together. Mum and Dad will definitely be able to push me around and that will let us all have some fun together! When we go visiting people, I will be able to lay and play on the Floor Surfer, which will let me be off the ground. Thank you so much to Nicole P. and her beautiful family for buying this for me! xx Here's some technical stuff about the Floor Surfer: - The raised front part of the floor surfer supports the coccyx if I'm sitting and the sternum when I'm laying down. - Slightly tapered at the front to give increased freedom of movement for my arms. - The wheels are screened to minimize the risk of running over my fingers. - Quality wheels with double ball bearing. - Narrow sides act as handles where my hands are protected by the protruding corners. You might also like to read about:
My Bike My Stand Up Paddle Board Adventure My Walker My Standing Frame My Bed Return to Home page Return to Blog 74 days left 74 days until we start Relaying for Life This is from the Relay for Life site: Every five minutes, another Australian is diagnosed with cancer. While survival rates are improving every day, cancer remains a leading cause of death. To improve this statistic we ask you to sponsor or join our team. We've got 74 days to raise some money for Team Love Dexter. There's a lot of people needing money right now, but if you have a spare $20, we'd love for you to sponsor us. It's tax deductible and it helps us fight back against cancer. Tell some friends about Dexter, and they might want to sponsor us, too. If you just can't sponsor us, you can still help.
Spread the word. Tell some people. Share our Love Dexter Relay Team's page. Thanks to everyone who's sponsored us so far! xx It's International Childhood Cancer Awareness Day today. It's sad that we need an International Childhood Cancer Awareness Day. Not long ago, we didn't know much about cancer and we hardly ever thought about childhood cancers. Now, worries of Dexter and cancer are often in the back of our minds... horrible thoughts, festering and leaving us worried and tired. We've written about Cancer Awareness Days before. In Australia alone childhood cancer claims more children’s lives every year than any other disease. However, it isn’t all doom and gloom. In fact childhood cancer is a medical research success story. Fifty years ago childhood cancer was virtually untreatable. Today, research has turned that figure around and we now see almost 80% of children with cancer survive. Kids' Cancer Project **Research is helping! Raising awareness is helping! Sponsor Dexter in our Relay for Life, and help with cancer research. (Sponsor us here.) Dexter's cancer changed us. It changed our whole outlook on things. In some ways, we are much stronger and much tougher... and in other ways, we are still broken and hurting. In some ways, we have more patience and tolerance ... but in other ways, we are less tolerate. We see things differently now. Our priorities have shifted and we are different people. How could we not be? We watched Dexter go through an awful ordeal... We watched him fight and cry. According to World Health Organization (WHO) statistics, around 80% of children with cancer are living in developing countries, and the risk is higher among infants. There are 12 types of childhood cancer where leukemia (blood cell cancers) and brain cancer are considered among the most common of cancers affecting children. Source We're lucky. Dexter's cancer was detected early. Dexter's cancer responded well to treatment. Dexter's cancer hadn't yet reached his lungs. Dexter's cancer could be surgically removed - it was in the 'correct areas' of his liver. And, Dexter's cancer was in the only organ which can rejenerate. While Dexter lost half his liver, it will grow back to a certain degree. He should end up with about 75% of his liver. We're lucky, because Dexter is here today, and many, many, many children are not. There is still a long way to go in curing 100% of cancers. There are still cancers such as brain tumours and neuroblastoma where 50% of kids don’t survive. The only way to change this is medical research. Kids' Cancer Project http://relay.cancercouncil.com.au/2014/kiama_2014/Love-DexterDexter has been cancer clear since January 2012. We've made one year cancer clear! A few years ago, we never really spent any time thinking about childhood cancers, but now, we know more than we ever thought we would. And, if Dexter had to go through that and he was able to survive it, we feel it is our responsibility to help others learn about childhood cancers. We have to speak for him and help raise awareness. And, research is working. Children and being treated saved. Survival rates are rising. For International Childhood Cancer Awareness Day today, maybe you could tell someone a little about childhood cancers. maybe you could help us to raise awareness. Sponsor Team Love Dexter in our Relay for Life If you have any questions about childhood cancer and chemotherapy treatments or surgery, we might be able to help you. Don't be afraid to ask.
Keep fighting, Kids! xx
My sister is pretty smart. She's one now. She knows I am a bit different to other kids. Sometimes, she stops eating the tv remote and watches me. I can imagine her wondering what it is that makes me different. She is sitting and standing now. She's taken a few steps and she's so chatty. She climbs over everything and she always turns off the television when I'm listening to it. She's feeding herself and playing with toys. She watches me and she wonders why I don't do those things. She knows I am different to her. One day, Mum and Dad will tell her the words she will need to know...
But for now, she just knows me. Right from the start, I've loved her. So much. I loved her even when she kicked me while she was still in Mum. She still hits me sometimes... for no reason. But she loves me. She's too busy to go around giving people kisses and cuddles, unless she's really tired... But, guess what. She kisses me. And, she lies on me and that's like a cuddle. She is really good at blowing raspberries on people, too and I am one of her favourite people to blow raspberries on. She crawls over to me, lifts up my shirt and my belly tickles with her little, noisy raspberries. She has started to offer me my drink and sometimes, she tries to feed me. She usually snatches toys away from me, but sometimes, she hands me something to play with. In the morning, when she gets out of bed, she claps and cheers when she sees me. My sister loves me. I get lots of stares when I'm out and about... and my sister will get these stares, too. The stares are funny, sometimes. Sometimes, we don't notice them and sometimes, they are hurtful and frustrating! Sometimes, people will do anything to avoid looking at me, and sometimes, people will almost crash in to a pole, because they are staring at me. I get many, many double-takes and lots of whispered comments. My sister will grow up feeling these, too. Some days, this will be awful for her, and she might even have occasions where she is embarrassed by me, and even, angry and resentful for having to put up with my stares. But, I know that these moments will pass, and that underneath everything, she loves me with all her heart. I know she'll play tricks on me, and tease and torment me. She might even try to blame things on me! All sisters do that sometimes, right? But, she might have to take the rubbish out or vacuum the floor... and I probably won't have to do that! My sister has a brother with severe cerebral palsy... who has no words, yet... and I have a sister who already has incredible empathy and understanding. She doesn't have the words, and she doesn't know why I'm different. She just knows I am different. And, she knows to be proud of me. She will see me doing my exercises and she will clap and cheer. She kisses me for no reason and she goes around the house saying 'Hi, Dexter!'' in her cute, high-pitched little voice. My sister may face a lot of difficulties and hardships, judgement and teasing because of me. She will also see the way people look at me, and how they treat me. She will hear their comments. She will see their pity. And, she will see the people who actually see me - Dexter - a little boy. My sister will probably always see people for exactly who they are, not what they look like or what they can do. For that, I am very proud of my sister, and I love her very, very much. Read: Who is this Dexter kid?
What happened in 2013? Read about Dexter's Big Boy Bed See Dexter on the Stand Up Paddle Board Return to Home page Return to Blog My Nanoo sent me a book she made especially for helping me to see! I love the colours and different textures!
I got a big boy bed! It has special sides and goes up and down. My head can be raised and so can my feet! It's fun! A man delivered it today and set it up for me.
Hamish and my Cancer Bear are already in my new bed, and Mum hung my old lion friend from the triangle support piece. The Lion has been with me since I was in my first 'open bed' in the neo-natal intensive care unit, too! My sister loved it when my bed went up and down. She clapped and cheered! I love it, too. I'm a big boy, now! My sleep form mattress will fit well in the bed. It didn't really fit in my cot. I just hope my sister doesn't learn to use the remote control for me bed! Remember the sleep form mattress I got?
(It cost about $3600) Well, it also acts as a seat for me! It is perfect for helping with my vision work. I can sit in it and try to find and look at the things that are hanging down from this clothes hanger rail. Mum made this for me. She hands shiny, noisy things off the bar. There's lots of red, because that's one of my colours. Sitting and looking at them is great... except for when Charlotte pulls the hanger down on my head! Lucky its only light! I love her! My sister likes to throw things on the ground,
and in her own way, raise her hands and eyebrows and say "Who did that?" Well... Look at my toes! Who did that? |
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