Mum put them around my window.
Because my right eye is better for seeing,
I keep turning in my bed to see them better. I love the red.
Read more about Learning to See here.
How cool are my lights! Mum put them around my window. Because my right eye is better for seeing, I keep turning in my bed to see them better. I love the red. This is one of the tricks we are using to help me to learn to see.
Read more about Learning to See here. When I sat on my bike, everyone smiled. Suddenly, it was like I didn’t have cerebral palsy… Life seemed fair… Sure, I don’t push the pedals around and I am fully strapped in, but… every boy should have a bike. We got my bike through TAD Disability Services in NSW. This is a charity group, who build and customise bikes for kids like me. They also design and build other equipment that people with disabilities need. An amazing thing about the people at TAD, is that they are volunteers… They are working to make people’s lives easier… better… and they volunteer their time and skills to do it. Because they are volunteers, the costs are dramatically reduced. We were only charged the cost of the bike and the cost of the materials to make the support sections of the bike. “Even though many of our solutions appear relatively simple, they make a world of difference to our clients.” We absolutely agree with that! TAD has been helping people like me for over 37 years. They have developed over 30,000 devices to help people with disabilities live with greater independence. “For every young child with multiple disabilities, the right equipment at the right time can mean the world of difference to developing their ability to interact, to play and to become their own person in the world.” “People with disabilities and their families often face overwhelming financial hurdles. At TAD, we believe that every individual has the right to equal opportunity and affordable equipment.” Quotes taken from the TAD NSW website. There are ‘trainer wheels’, which are called ‘outriggers’. These are bigger than trainer wheels, because my bike is big. They will give me balance, so I don’t have to worry about falling over. They can be removed. There are two pieces which wrap around my torso and these are postural supports. There is also a back and head support section. They can be adjusted, as I grow and having them, means I can focus on having fun and pedalling, not sitting. There are foot supports, which are like big pedals. My foot is strapped in. My hands are strapped to the handlebars. My bike really is amazing… It really does make me look like any other little boy, until you look closely and realise how much support I have… or until you notice me being pulled or pushed around. But, I will learn to pedal the bike myself. My bike makes me chuckle sometimes, too… I like the bumps. Mum and Dad are going to get me spokey dokies, so I will make lots of noise as I ride around the block!
Thank you! This means so much to us! Find out more about the Minnamurra Lions Club here. More about TAD Disability Services This fantastic organisation began in 1975. A man named George Winston AM and a small group of engineers decided to work together to make the lives of people living with disabilities a little easier. They used their skills to change lives… increase independence and to build a world of fun for people who were previously made to sit by and miss out. Now, there are over 250 TAD volunteers in NSW. They donate thousands of hours of time to build and modify more than 1,000 items every year. TAD only receives limited support from the government and relies on donations. Donations over $2 are tax deductible. TAD Disability Services (TADNSW) Locked Bag 2008, Wentworthville NSW 2145 Telephone: 1300 663 243 Facsimile: (02) 9890 1911 www.tadnsw.org.au Find out more about the amazing people at TAD NSW Disability Services.
Today was a fun day! We went on some trains and it was my first time. I liked the steam and the bumps made me laugh! (Everyone loves it when I laugh!) One of the trains was the old style steam train, with the glass windows you can open and the smelly steam, which drifts in the window! The old horn makes the best noise! The other train is a smaller model, and you straddle the train as it rides around on it's miniature track. I sat really well on Mum's lap while we were on this train! I think my smile sums up the day! Thanks Camp Quality and the Illawarra Light Railway Museum! It's for days like this one that we wanted to raise money for Camp Quality, through the People's Truck. This year, we raised $6725. Read how we did it here. #DextersMates Watch the Camp Quality Convoy video, with the People's Truck here.
Watch my cancer story in photos here. Return to Home page Return to Blog Ok, I know there are still 12 more sleeps until Christmas....
but, because of my surgery, I got my present early! Thanks to the Minnumarra Lions Club and some funds from Melissa's fundraiser, I am the proud owner of a specially modified BIG BOY bike! I love it! I had a good sleep, and woke up happy - in my own bed!!
Today is the second Brewing it for Dexter Day. Come down to the Brooding Italian. $1 from every coffee sold is coming to me, for therapy sessions with Zoe. Thanks Paolo and the team. xx We're being very brave today, and confident. I went to the doctors this morning, so I could have my 18 month injections. So, what's the big deal with that? Well... I have a bit of a history with my immunisation injections. Sometimes, I've stopped breathing after getting an immunisation injection. So, this time... I'm much bigger and I'm much stronger and we are being brave and confident... I won't end up in hospital tonight! When I was 2 months old, I was still living in the neo-natal intensive care unit. That's where I had my first immunisation injections. Twelve hours after the injection, I stopped breathing. Mum and Dad were driving to Sydney to see me. It was early in the morning, and they had had some trouble getting through to anyone in the ward. Whenever they were not with me, they rang for check ups. Finally, when they were still in the Illawarra, they got through to the ward. The nurses told them I had had some trouble with my breathing and I had gone back on to a CPAP machine. Mum could hear me screaming in the background. I hated the CPAP machine. I needed to stay on CPAP for over a week, and then Mum begged them to take the CPAP off me and put me on oxygen prongs, which they did. Just before I finally came home for the first time, I had my four month injections. Mum and Dad told them I had had trouble after the first injections, but no one really believed them. They told Mum she could stay overnight at the hospital, if she really wanted to, just in case. Sure enough, at about 11pm, Mum's phone rang. I was having trouble with my breathing, again. It had been 12 hours since the injection and they had to put me back on oxygen prongs. This time, I pulled the oxygen prongs out after 24 hours and, because I was breathing well enough, the nurses left them out. Because of my history, when I had my six month injections, I stayed overnight in hospital. But, I was very good and I kept breathing on my own, all night! When I had my 12 month injections, we knew about the mass on my liver, but hadn't officially been told it was hepatoblastoma (cancer). We went ahead with my injections, even though there were problems with my liver. I didn't stay in hospital for these ones, and I was fine with my breathing. Getting my injections makes us worry a little bit. So, when my oncologists told Mum and Dad that the chemotherapy would mean I would have no immunity and I would need to get all of my immune injections again, they were worried... and a little sad and a little frustrated! All those times I had suffered and stopped breathing were for nothing! People might argue that we are better not to get the immune injections, and actually, a nurse judged Mum a bit, because she was making me get them... But, you might remember when I had just been cleared of cancer, and still had my central line in... we had a couple of chicken pox scares. Children undergoing chemotherapy are very, very vulnerable to the chicken pox virus, and it can be fatal to them. Those few weeks, where we had had some contact with people who were around kids with chicken pox were frightening! Being immunised takes away that fear! So, today, at two and a half, I had my 18 month injections. Mum just took me to my lovely doctor. The doctor and nurses were a bit worried about me and made me stay longer than the standard 15 minutes. They understand that the 12 hour period is the scary time, and they asked Mum what her plans were... just in case. So tonight, I'm sleeping on an angel care monitor and we are ready to call an ambulance, if we need to. But, we're being strong and confident... I'm bigger and stronger, and we'll all get a good nights sleep. (Well, I will. They will still be stressing about me all night!) Woohoo! I did it! I slept well. Mum... not so much!
Mum made me some paint (with corn flour and food colouring). She wanted it to be non-toxic, because she thought I might try to eat it! She was right! When she walked in to the kitchen, I grabbed some of the paint and I tasted it. It was a bit yuck. But, the painting was great fun. Mum gave me a piece of paper to paint on, but that was a bit boring, so I picked up the paper and threw it away! For a boy with severe cerebral palsy, (who is using his fingers a lot more lately), throwing the paper away is a great thing! I painted on the tray, instead. That was fun! I like painting.... Mum isn't too keen on the cleaning up part, though! In the afternoon, we played on the trampoline. My sister was climbing all over me and Mum. She's a bit of a ratbag, but we love her! And look what my friend Kylie posted on facebook!
This is the Christmas photo I sent her. She put it on her fridge. That's cool! Today is another anniversary for us. A year ago today, Dexter's last round of chemotherapy for his hepatoblastoma finished. That was a very emotional day! We were happy and sad and scared and relieved. There were lots of tears, but lots of smiles too. We'd already had so much 'bad news' given to us. It seemed, every time we were getting our heads around one thing, something else would be thrown at us, and we would be in another tail spin, trying to get our heads around it. And then, we got the cancer diagnosis. We did get lucky, though. There were two cancers Dexter could have been diagnosed with. Dexter was diagnosed with hepatoblastoma, which responds much better to treatment than neuroblastoma. (Had it been a neuroblastoma diagnosis, our story might be much different.) We personally know some families who won't have their child with them this Christmas. While we try to remain positive and strong, we have been through hell. We have seen death. We have faced death. We have spent countless hours in hospital and have lost countless hours of sleep, worrying. We've cried thousands of tears and felt incredible pain. While Dexter did get sick, it could have been worse. Dexter coped 'well' with his chemotherapy. He hated the third day of chemotherapy. This is the day he would be sicker, and had no energy. He was too little to play and, with his vision, couldn't just watch a movie or play a game. This was hard. After every round of chemotherapy, Dexter got sick. There was vomit... so much vomit. And, diarrhea. There were hours of lying together and just waiting for the chemo drugs to leave his little body. And then, he had no immunity, and every time someone sneezed, we'd have a moment of panic: Dexter might get pneumonia! We always had a thermometer close by, and constantly checked Dexter's temperature. A packed bag was always at the ready, for the times when we needed to get to the hospital. After a few days, he would start to feel stronger and we could relax a little. Then, we'd notice the little red dots on him, indicating that his platelet levels were too low and he needed a transfusion. More hospital time. Each week, he needed his blood taken, so each week was another trip to hospital. But, Dexter coped pretty well. He continued to eat on his own and never needed to resort to a feeding tube. A lot of this was because we pureed his food. Throat ulcers made eating difficult. Sickness took some of his appetite. The reason we dreaded the feeding tube, was that many, many children with severe cerebral palsy end up on green feeding tubes and never again eat 'real' food. We hate the thought of Dexter never being able to enjoy 'eating' food. Luckily, Dexter coped physically, too. He managed to maintain his body weight throughout the nine months of chemotherapy. And, he didn't really regress in terms of his strength and mobility. Our little boy just wanted to keep working at standing and moving. Sometimes, we made it look easy - Dexter's cancer journey. You just didn't see our bad days. And, there were lots of bad days. But, they are behind us now. In the back of our mind, cancer memories and worries linger. We were told there is a chance Dexter will develop secondary cancers, most likely in the form of leukemia. This makes us very, very nervous each time Dexter has a scan or a blood test. We tense up in the days leading up to the test, and once we get clear results, we feel the tension drop away again. If Dexter has a lazy, miserable day... we wonder if it's cancer. With today's End Of Chemotherapy One Year Anniversary, all the memories come flooding back. We could be in that room again... Here are some numbers for Dexter and his hepatoblastoma battle: 6 rounds of chemotherapy = 480 hours of chemotherapy 4 surgical procedures 5 CT scans (and more to come) 8 platelet transfusions 5 blood transfusions 1 plasma transfusion 28 nights on the oncology ward 5 nights in the surgical ward 13 nights in the Children's ICU 5 nights in Wollongong Children's Ward, in Isolation 33 weeks of weekly blood tests and line care. Today makes us think of all the families we met in the oncology ward. It makes us remember the hardest days. And, it makes us celebrate the good days... We have Dexter to love and hold... and he just might have to put up with a few extra kisses today. And, we have met some wonderful people, who held us up on the darkest days and helped us through a truly awful time. This time last year, people were sharing celebration foods - for the end of chemo party. Remember? We do. We'll always be grateful to Dr K, for finding the cancer so quickly
and Drs Draga and Toby, his oncologists and Dr Guy, his surgeon. We also love the nurses and Margaret, the nurse nanny, for loving Dexter. Today my friend Cat and her boys came to visit.
We went to the river and it was fun. They gave me a special monkey - it's a doctor! Charlotte got a doll with pink hair! I loved my cuddles. Thanks so much for visiting us! We always try to find a silver lining. When we first heard about my necessary surgery, we were pretty sad. It will mean I will lose so much of my strength and I will no longer be as good in my walker or in my standing frame. That makes us really sad, and for a while, we wondered why we even bother. It was just another kick in the guts. But then, we got over it. I will be in full leg casts for at least six weeks. I will not be able to bend my legs. I will most likely need to be pushed around in a wheelchair. It will be hard to do much physical therapy. So... the silver lining... We will have a lot of time to focus on my vision. I have Cortical Vision Impairment (CVI). Some people think that means I am blind. That's not correct. "Cortical vision impairment is diagnosed by functional visual disabilities. Typically, these children have a “normal” vision report from an ophthalmologist, meaning that their eyes are not damaged or defective. However, observation of the child’s behavior reveals lack of use, or limited use, of vision for functional activities. These vision problems stem from neurological damage and difficulty with the brain processing what comes in through the eyes. For these children, vision is always changing, and specific attention needs to be paid to building the neurological pathways that enable them to make sense of what they see. Without this, vision can fail to develop or deteriorate. With appropriate and practical strategies for developing visual skills, integrated into daily routines, many of these children can improve their ability to process visual information and make sense of what they see." Linda J. Burkhart (Taken from here) My surgery date has been set. I'm booked in for the end of January. After I recover from the surgery, we will start working on my vision. Actually, we've already started. We know I can see some colours, because I responded to them in my latest vision assessment. We have a corkboard covered in black material. It hangs on the wall and I face it when I am eating. The black is a perfect solid background and lets me concentrate on my seeing. Each day, some material is added to the board. Only one colour is added and only one style or shape is added. (All circles, or all squares - not circles and squares.) This helps me to learn to see the shapes and colours. My Nanoo sewed these pieces of material for me. She chose the colours because they are the ones I can see. I really like them. And, my Mum and Dad like it when they see me looking at the colours. The following quotes have been taken from "Little Bear Sees". We are learning a lot from Little Bear Sees. Thank you!
Dr. Roman-Lantzy, author of Cortical Visual Impairment: An Approach to Assessment and Intervention, divides CVI into three phases. Most children start in Phase I, which means that most of the CVI characteristics are present. As a child progresses through the three phases many of the characteristics begin to resolve. This process can take several years and requires diligence and persistence. Children in Phase III approach near normal vision to varying degrees and this may even result in literacy. No one told us that when they were telling us I had CVI! This is what we will be spending a lot of time on, while I can't do my regular therapies. And, thanks to Little Bear Sees, there are lots of simple, easy tricks we will be able to use everyday. Here are a few of their suggestions: ** You could also place a red object on or near the diaper changing table, car seat or wheelchair. The key is to place opportunities for the child to see throughout their daily routine. It becomes easier and easier for CVI kids to see these objects as they become familiar with them. ** You can reduce visual clutter by providing an all black background against which the shiny, bright, highly saturated colored objects can be placed. Try to eliminate noise to give your child the ability to simply focus on seeing. ** When presenting an object remember that you may need to wait several minutes before seeing a response. This is especially true of unfamiliar objects. ** Initially, objects should be only one highly saturated color, like fire engine red. Moving objects are easier to see, and shiny objects can approximate movement. For many children with CVI the use of light is also helpful. For example, shining a flashlight on the target object can draw a child’s attention to it. Little Bear Sees Our silver lining is that we are going to be able to dedicate a lot of time to daily therapies to teach me how to see. These are some ideas for play things, which we will start to collect and make: 1. Wide silver mixing bowl with rubber ball - swirl the ball inside the bowl creating a reflective motion 2. Food dye & hair gel in a double zip lock plastic bag - on a light table or light box 3. Roll cat bell toys on light table or light box 4. Plastic needlepoint screens on a light table or light box 5. Mesh place mats and coasters on a light table or light box 6. Arm band bicycle light attached to bottle 7. White box with silver CDs strategically placed on it so the child can see him/herself- can also double as a lap desk 8. Rope Lights 9. Iridescent light chaser 10. Lead light wand 11. Silver dryer duct tube 12. Artificial or real flowers, e.g., sunflowers, daisies, orchids, etc. 13. Lift-off spinning toy-stays in the air for a while. 14. Neon tubing strung with cat bell toys 15. Bubble blowers 16. Spinning top that changes light color as it spins 17. Slow moving wind-up toys 18. Giant florescent puff balls 19. Florescent foam sun visor 20. 3 plastic plates (2 one colour-1 another colour) on a contrasting coloured mat 21. Bright, one colour Slinky (on light table in the beginning, then without light) 22. Round vinyl tablecloths in yellow, red, or black to provide an uncluttered background creating visual contrast 23. Black tri-fold display board to provide an uncluttered background creating visual contrast (I can't remember where these ideas came from!) |
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