For now, Mum and I are enjoying quiet time (but secretly we both miss Daddy and my noisy sisters!).
Thanks everyone, for thinking of me. xx
I'm still in hospital, but am feeling much better and even a little bit cheeky! Because of the bug my blood is growing, I will be here again tonight and probably tomorrow night, but we will find out more later.
For now, Mum and I are enjoying quiet time (but secretly we both miss Daddy and my noisy sisters!). Thanks everyone, for thinking of me. xx I like moving around. I like it a lot!
See the green mat? I was on that, facing the other way. Mum was cooking and my sisters playing. So... I went exploring. Some people still don't think I can roll over... I might not crawl in the conventional way and it might take me a bit longer to get somewhere, but nothing can stop me moving. I head in the direction I want and I am getting much faster. I would not have been able to keep moving like this in the old house... there would not have been enough room! Now, there is no stopping me! #nevergiveup My brain damage was found when I was 30 days old. Here's what Mum wrote: A week ago today, our world once again turned upside down. After coming back from our first day away from him, we were informed the doctor wanted to have a chat with us. We were taken into a special room with two doctors and a nurse. We were sat down and the doctor attempted small talk. Our nerves were frayed and tension was high. Dexter had had a routine head ultrasound on his four week birthday, just checking for any abnormalities or concerns. Unfortunately, the doctor advised us that they had, in fact, found something in the white matter of his brain. He called it Periventricular Leukomalacia, or PVL, or in more simple terms... brain damage. When he said those two words, our world stopped. Thoughts, questions, anger, blame, guilt... all rushed through our minds, with the biggest, unanswerable one being: Why? Four years later,... we've been through so much together. We've had incredible lows and gut-wrenching heartbreaks. But, there has always been love. Always. So. Much. Love. Being surrounded by so much love and hope and determination has the most amazing impact on me. I know they believe in me. I know they feel heartbreak, but they continue to chase the rainbows and sliver linings. They continue to try, and they celebrate every little achievement. And so, I continue to try. I'm proud and determined. And I love them. So Much. I'm a very lucky little man. Thanks, Mum and Dad
My Birth They Want Octopus Arms Little Fingers Reaching Mum. Love Her Time With Dad But, Where Can Dad Go? I Didn’t Tell Dad I Love Him Dexter's 2013 Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtub We have had a big week! I go to school three days a week now! I'm tired, but I will get used to the three days. And, next year... I will be going to school five days a week. I also had my bi-annual Cerebral Palsy review, which made Mum feel very sad. She hates hearing about my limitations and my tightening muscles. She does so much therapy with me, that these days really hurt her. She was told she looks exhausted. She is. Mum is up at 5am and does not stop until .... well, she doesn't stop. At least one of us will wake her a few times each night. She's exhausted, but she is incredible. I had another swimming lesson. I love the water. I try so hard to keep my head in the water. I'm learning to put my face in the water and lift it out again. I love swimming. I love that my swimming teacher recognises my strength and is happy to continually push me to do a little better. It's been a busy week! But on Tuesday, we did something super special thanks to the Starlight Foundation. We were invited to go and see the Dora show in Sydney! There was lots of singing and dancing. And I got to sit up in the chairs, just like everyone else! That was fun! Thanks Starlight! What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word Classifications – CP & Dexter It’s A Good Time To Have CP Dexter’s Days Dexter’s Darkest Days Dexter's Fun Plans Dexter's 2013 Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube Today was a bit of a 'blah' day for us.
I had a Cerebral Palsy review done. That's where they measure arms and legs to measure my range of movements, and see if I am still growing. It happens every six months. It's hard to hear that my muscles are getting tighter and that I have increased spasticity. It's my reality, but it's so frustrating because of all the hours we spend on therapy. Mum does sneaky therapy on me all the time. If we are cuddling, she gets me sitting on my own; things like that. And then this afternoon, we found out that despite us waiting for close to six months for me to have surgery, I haven't actually even been on a wait list. Mum has been trying to contact the hospital for ages, but they never got back to her. And so, we have to start our wait all over again! I'm so lucky Mum stays on top of these things. So... today was a frustrating day and a day were we really don't like cerebral palsy. Today, we drove up the mountain and went to the Illawarra Fly Tree Top Walk. It was so beautiful and green up there and you could see so far! My Noisy Sister said it was 'very colourful'. Mum is a little bit scared of heights, but she acted very bravely when she was up on the bridges. My noisy sister isn't scared of heights! She climbed to the top of the tower with aunty Carol! I liked being up in the trees! It was fun at the Illawarra Fly Tree Top walk. The Noisy Sister enjoyed climbing the tower steps! The view was amazing! Find out more about the Illawarra Fly Tree Top Walk by visiting their website here.
Dexter's pram (wheelchair) was easy to push along the Illawarra Tre Top Walk. He didn't go up the main tower, but was able to enjoy everything else. There was a steep section of hill between the entrance and the walk. We were able to push Dexter up and down this. We recommend a visit! Well today was a bit fun! Mum packed up my beach wheelchair and we took it to Jamberoo Rec Park! We got a lot of looks and comments about my chair, it was a bit funny! Lots of people said my beach wheelchair was very cool! It was so much easier, having the chair there. I liked being able to 'run' through the water fountains. I really liked going down the slides, and we even went on the tube ride! Dad is away at the moment, so we bribed Aunty Carol with coffee! She came with us. Mum couldn't have done today on her own. And, we also couldn't have done it without the great Jess. Jess is a Camp Quality volunteer, who always helps us out and takes one of my sisters. She's really patient and helpful. Thanks Camp Quality for a fun day! I love these two cheeky girls... even when the littlest one sits on me! The water was a little bit cold, but I was really trying hard to get out of the beanbag float! I wanted to get in the water. So, Mum put my neck ring on... and, I was off! I loved the fountains. We loved our ice-creams to end the day! We were all asleep as soon as we left the car park! What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word Camp Quality Canberra Camp Quality Canberra 2 Trains Camping Fun Convoy 2014 Luna Park Fun Fun Day 2015 Dexter's 2013 Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube Dexter is doing so well. He’s happy. He’s chatty. He’s getting stronger and stronger. (He still has cerebral palsy. He’s still non-verbal. He still has a vision impairment.) But, he’s doing so well! The new home would be part of that. Everyone is relaxed and happy. Dexter is surrounded by the chatter and laughter of his sisters. He has so much more area to move around in. It could be that the impact of Dexter’s chemotherapy treatments and the femoral osteotomy surgery have finally faded. It could be that his body is feeling stronger. Or, it could be that Dexter has started to take medication for sleeping.
It is common for kids and adults with cerebral palsy to not produce melatonin. If this is the case, they need the medication. We were told Dexter may not have to stay on melatonin, and that his body will hopefully start developing a good routine. The medication should hopefully encourage his body to start producing it.
We gave it to Dexter and, an hour later, he was in a very rested and happy place. There was the most gorgeous grin on his face and he was soon asleep. He was asleep hours before he would usually have fallen asleep. He was asleep without the whinging that came when he was over-tired and had been in bed for an hour or so. We’ve been giving Dexter melatonin for a couple of weeks, now. He’s eating breakfast. And morning tea and lunch and afternoon tea and dinner! He’s eating really well! (We’re still having to make sure he drinks enough.) He’s so much chattier. He rarely sleeps during the day and no longer falls asleep half way through dinner. He is more active during the day and doing really well with his home therapies. There was one night episode of Dexter’s constant crying and whinging, which he occasionally does. We call these ‘cerebral palsy nights’. He works himself up to a very agitated state and we cannot bring him out of it. These are bad nights, and we hate them. Dexter had the start of one of these episodes… but it didn’t last long. We weren’t sure whether the melatonin was causing Dexter to have a reaction, but there hasn’t been another one of these episodes. That little melatonin bottle was pretty pricey! We went in a little doubtfully… a little reluctantly… but now, we’re seeing some great results. We’re seeing a cheekier, chattier and more determined little man, who is doing so well with his eating. He’s still grabbing for the spoon, too! If you are like us… fighting using sleeping medication for the first time… If you have a child like Dexter, who needs some help to relax and fall asleep… We are finding melatonin to be really helping Dexter. It's World Cancer Day. Many kids are still fighting cancer. Some are like me; cancer clear. Recently, I reached three years cancer clear. Mum and Dad are about to remember the anniversary of the day my 'cancer cords' were removed, and I no longer 'looked' like a 'cancer kid'. That was a great day! Because my cords were gone, I was allowed to get back into the water and swim! The tape that held the cords down made my skin red and I got so many rashes. Many kids have lost their fight, and things will never be the same for their families. Lots of adults are fighting, too. Imagine if World Cancer Day was no longer relevant...... Research and international conversations between oncologists helped me beat my hepatoblastoma. The scars are still on my body, but... my eyelashes have grown back. The scars will forever be on Mum and Dad's hearts. #hepatoblastoma #research #worldcancerday #childhoodcancer Thanks, Mum and Dad
No Egg End of Chemo – 1 Year Anniversary Hepatoblastoma Surgeries Chemotherapy Finding Out & Starting Treatment Cancer in Photos Dexter’s Hepatoblastoma Dexter’s Cancer Story Done! See the Cancer? Lizard and Cheeky Hair Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube This post is a shout out to our local friends. (And by that, we include the people who follow me and support me from afar.) Over the holidays, we noticed how many people were staring at me. We’re not talking about the a-little-bit-longer-than-normal glance… or a double take. We’re talking about the almost-crashing-into-the-telegraph-pole stares… the ones where people cannot take their eyes off me. They don’t say hello. They just can’t look away… We noticed these stares because our community is so good. So many people know about me. So many people know much more about cerebral palsy. So many people know that, cerebral palsy and a vision impairment aside, I’m just a cheeky kid. We want to thank you for that! Thank you for letting me go to the park; to ride the swings… Thank you for letting me go to the beach; to ride the waves. Thank you for noticing me and not staring. Thank you for not pointing... (some people point at me for a long time!) Thank you for treating me just like all the other kids. Thank you for saying hello and giving us a smile of friendship; not pity. This is why we keep sharing my story. We open our hearts over the ‘bad stuff’ and excitedly share the ‘good stuff’, so people will know that I am more than my vision impaired gaze and cerebral palsy stricken body. I’m Dexter, and you guys see that. Thank you for being such an awesome community! Why Lifting Me Up Feels Like Letting Me Down
But, Where Can Dad Go? My Sister Knows Equal Love Trying for a Family Photo It Takes Energy to Stay Strong Out of the Mouths of Babes Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Who is Dexter? Return to Home page Find me on: facebook twitter instagram pinterest youtube |
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