So, what did Mum and Aunty Carol make us do?
Go and have a picnic! It was so windy! We had to hide behind some bushes.
But, that was a nice way to fill in a day when Dad had to work!
Wow, today was windy!
So, what did Mum and Aunty Carol make us do? Go and have a picnic! It was so windy! We had to hide behind some bushes. But, that was a nice way to fill in a day when Dad had to work! Today was my first ever book parade! I dressed up as Clemmie and her rocket ship. (This is from Rebecca Elliot's book 'Just Because'.) Clemmie's little brother tells a story about his sister, who is in a wheelchair and can't talk. He doesn't know why, just because! This book is a lot like me and my sisters. My class got to lead the book character parade! I really liked the clapping and the music! Then, we had a picnic lunch and I got a lunch order! And, I got to go home early! My teachers dressed up and did an awesome job. I like my school! You can read more about Just Because - the book about Clemmie here. Or, you can visit Rebecca Elliot's website. #cerebralpalsy #nonverbal #wheelchair Here's a photo of me and the book Just Because, from a while ago. It's a great book! They Want Octopus Arms
Little Fingers Reaching Something to Say But No Words to Say It And Then, They Whispered about Me When Wheelchair Stops Being a Dirty Word Stuck in a Rut Embrace the Lion I’m a Kindy Kid! 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 What a beautiful day it was today!
I'm ending it by reading my story book, about walking to the beach. My Vision Australia therapist made it for me! #cvi #cerebralpalsy **Thank you for your support and kind words, following our bad news week. The friendship really helps. We're sad, but we won't give up. You can read the post here. Read about Ron's Rainbow Hair for Dexter here. Last week, Dexter was in Sydney for annual cerebral palsy related appointments. He had seven appointments in one day. His mum planned it so he could have oncology related bloods taken, before the meetings. She planned to have Dexter's 'cancer-checking' scans the following day. (He never got those scans... He developed high temperatures and was sent home, with instructions to see his doctor.) We waited a few days to write this post. We waited, because if we had written it after the appointments, this post would have been filled with anger, resentment and hate. And, we try really hard not to do that. We try so hard to find the positives. About this, we're still looking for positives, but we are a bit calmer. If we had written this post after the appointments were done, it would have been written through streaming tears and gut wrenching sobs. It's been one of those weeks. Every year, Dexter's cerebral palsy is reviewed. He spends a day in the hospital, going from one specialist to another. We sometimes get some good news, or some helpful advice. Usually, we get another form of cerebral palsy or movement disorder thrown at us. (Another diagnosis to learn about.) Usually, appointments end in frustration, with specialists not always 'seeing' Dexter, instead, trying to fit his diagnosis into the right box. Dexter has never followed the 'rules'. He's always done things his own way. Usually, these days end in tears. As harsh as it sounds, Dexter is not seen as a success story. He's not walking. He's not talking. He's not smiling. He's not sitting. He's not self feeding. He's not a success story. (To some people... To the people who speak in 'can'ts'.) To us, Dexter is an incredibly tough, extremely brave, amazingly patient and determined little boy. He's brave and kind, loving and caring. And, he is doing so, so well. He has been kicked down, so many times, but he continues to get back up and start fighting, again and again. But, this year's appointment made me wonder how many more times Dexter will have the determination to keep fighting back. I wondered how long it might be before Dexter stops trying, because we keep setting him backwards. We keep doing things that hurt him. We keep allowing procedures, with many leading to him needing resuscitation. This kid deserves so much, but has dealt with such incredible difficulties and life-threatening complications. Cancer was just one of them. (See, even after a few days, there is anger and frustration!) So, what actually happened at this year's review? A good thing... We finally sourced someone to make Dexter's hand splints. The people who wanted to get it done, couldn't. The people who could get it done, wouldn't. And so, despite 'early intervention', Dexter was unable to get hand splints made. (His wrists are starting to turn in on themselves. This will make it difficult for him to hold pencils, spoons and toys.) We've waited about six months since being told that Dexter couldn't get the hand splints. Hearing that they would finally be made was great news. (This photo shows Dexter's turned in wrists. Without the splints, this turning in will become worse and it would be difficult for Dexter's muscles to remember to keep his wrist straight.) Another good thing... Dexter's new ankle foot orthotics (AFOs) will be made. He grows so fast and the last pair were getting too small. Also, his new sandals and another pair of shoes were measured and will be fitted with the wedge, to even his leg length discrepancies. **In this photo, Dexter is having a cast put on his leg, so his AFO can be made. And, see his other foot? See the colour? Dexter has terrible circulation. He always has. I can only imagine how much pain he must feel. We hate cerebral palsy and the way it brings such pain to Dexter. Dexter was getting sick. His temperature kept rising. He was complaining. But, he needed the measurements for his AFOs. He needed the hand splints. He had to stay. Lenice was told to go to the emergency department and check Dexter into hospital. She knows Dexter, though. She knows what a hospital admittance looks like, when it comes to Dexter. She knew she had to get the appointments done. She knew Dexter would be ok. And, so, the meetings went ahead. And then, Dexter's hips. The surgeon said Dexter's hips are much worse than they should be, especially considering Dexter has already had two surgical procedures to correct them. Essentially, Dexter's hips are dislocated. Again. He said Dexter needs to have both hips operated on. Both. Again. Last time he had this procedure, it was a single femoral osteotomy. This time, Dexter needs a double femoral osteotomy. Both femurs need to be cut. Both femurs need to be twisted into the correct position. Both femurs need to be screwed back into place. This will mean an even longer surgery than before. Dexter will be back in that dreaded brace, for a minimum of six weeks. Last time, the procedure shortened Dexter's leg by two centimetres. Last time, the procedure set him back two years in his progress with walking, sitting and standing. (He's still not caught up.) Last time, pain medications caused Dexter to code blue. He overdosed. A medical team came running, with crash carts and emergency equipment. Dexter was worked on, before thankfully coming back to us. Lenice and Andrew watched, helplessly. Last time, it was so, so hard. And now, we have to do it again. As soon as I heard this news, I worried. I worried for Dexter - for the pain he must be feeling and for the challenges that are coming. I worried for the work he's done with his therapies and how he will lose all the strength and muscle he has worked so hard to build up. And, I worried for Lenice and Andrew. I worried because I'm not sure whether Lenice is strong enough to handle the heartache. I don't know whether she can carry the guilt of Dexter needing more surgery. Her brain tells her she's not guilty, but every other part of her body feels that guilt with such intensity, it sometimes overwhelms her. She couldn't carry Dexter to term. He was born before he was steroid ready, resulting in his under-developed lungs. She is the one who positions him in his wheelchair and high low chair, his standing frame and walker... She is the one we turn to for advice. None of us blame her. Never! And, her brain knows that. But, her heart... It's just not strong enough to bear the pain. Her heart has been broken again and again. I never even considered the post traumatic stress triggers the surgeon's words would bring her. Lenice's immediate thoughts after hearing the surgery words, was of Dexter dying... Code blue. Resuscitation. Overdose. While Lenice was in tears, the surgeon continued to talk, explaining why the double osteotomy needed to happen. Dexter had another X-ray, which just confirmed that his hips were dislocated and that surgery was necessary. Through her sobs and tears, he listened while she explained that Dexter had already been through this, and it had failed. Already, Dexter has had a muscle release procedure, usually done when a child is 4 or 5. Six months later, he had the femoral osteotomy. This should not have to happen until the teenage years. At the age of six, Dexter was needing it. Again. The surgeon listened. He considered Dexter. After lots of tears, he agreed to trial Dexter on medication first, but wants to see Dexter again, in six months. Our hearts hurt with the sureity that Dexter will need the surgery. We know the surgery will be another major set back; both legs will be shorter, the right side even more so, because of the previous surgery. Rehabilitation will be huge. Dexter cried for a week straight, last time, Dexter almost never cries! So crying for a week straight... I can only imagine the pain he felt. The medication option isn't much better. The medication Dexter will be taking is used to help decrease muscle tone, so his muscles arent tight. Unfortunately, this will impact on all his muscles.... His sitting muscles, his standing muscles, his walking muscles, his rolling over muscles and his swallowing muscles. We have worked so long and so hard to rebuild these muscles after the last surgeries. We have cried while watching him try to step. We have walked away from him in frustration. We have held his hands while he cried. And, for what? It will all be gone. Everything we have worked on... All therapies... will have been wasted... Lenice cried a lot, last week. She cried all across the hospital... in the appointment rooms, waiting rooms and corridors. She cried all the way home. Her heart aches. She is suffering from post traumatic stress. And, she has been running on about three hours sleep, for about... six years. She is exhausted. Lenice is Dexter's biggest strength (after his own determination). I worry that she might not be strong enough to climb yet another mountain. I worry for Andrew and Lenice, because their life is so difficult. We hate cerebral palsy. We hate what it has done to our lives. We hate how broken and hurt we have become. There was a lovely moment, last week... Dexter's classmates and teachers were thinking of him and missing him, while he was away. They made him a beautiful card and everyone signed their name. And, one of Dexter's classmates asked his mum to send Dexter a message, because he missed him. This week was hard. It was awful. We will be ok... But, it might take us a while to find our rainbows and silver linings, again. And, when surgery happens... we're going to need some time. Carol. Dexter’s Femoral Osteotomy
We Nearly Lost Him Today, I Just Want To Be A Mum Something to Say But No Words to Say It And Then, They Whispered about Me Brain Damage – Finding Out Mum, Dad & Ten Years Mum was Crying in the Ball Pit My Walking Goal What a Dollar means to Dexter Stuck in a Rut Embrace the Lion Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Return to Home page Find me on: facebook twitter instagram youtube My Ron is awesome. He has a big heart and long hair, that I like to grab on to. Ron is going to colour his hair like a rainbow. He wants to raise money for me; to help me with my walking and swimming therapy. My sisters and I love our Shellharbour Swim Academy teachers. All of the people who work there always say hello to me. They really do care for me. They see me; cheeky, determined Dexter. They don't see my disability. My Ron is an incredible man. He helps so many kids learn to swim. He cares for all of them. They love him! I love, that for half an hour on Fridays, he's My Ron. We do laps of the pool, talk boy stuff and do boy things. And, we swim. I love him. Head over to the Shellharbour Swim Academy's facebook page and check out what Ron's doing. Thank you, Ron! Thank you to the Shellharbour Swim Academy and thank you to anyone who supports Ron's fundraiser. People are great! **You can read more here** (Every cent donated to Dexter is spent on Dexter. Money raised through Ron's hair colouring will be spent on hydrotherapy (with Ron) and physiotherapy.) #cerebralpalsy *Ron is Dexter's first male therapist. They are beautiful together. When Dexter is with Ron, we feel that he is wrapped in love, by a man who sees his potential and strengths. We love the cheekiness they share. We love that Ron takes time to hear what Dexter has been up to, during the week, so they can talk about it, in the pool. We love the confidence Dexter has gained. We love seeing Dexter splash and kick. Sometimes, wonderful people walk into your life. This is a photo of Ron and Dexter, after they went surfing together. Walking Until It Hurts
How a Dollar Looks, for Dexter Brain Damage – Finding Out And Then, They Whispered about Me Dexter’s Femoral Osteotomy Hip Surgery Needed Surfing with Ron Answering Questions – Non Verbal I’m a Kindy Kid! Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Return to Home page Find me on: facebook twitter instagram youtube I didn't get my 'cancer' scan, today...
I got sick and got sent home. I'm ok, but we are exhausted, so we will post more about today later. Today was a big day... I had my annual Cerebral Palsy review. I had to have a blood test and an X-ray and then had to see a social worker, physiotherapist, occupational therapist, rehab specialist and an orthotist! We will get a report in a couple of months, but, unfortunately my hips are worse than they should be. So, I'm going to need to have a review tomorrow, with the surgeon. This scares us a little. We are hoping he will say I won't need surgery and can have Botox instead. (I think Mum should see if they can sneak some into her, to get rid of her wrinkles!) We have another big day tomorrow, but more on that then! It was really cool to finally meet Mums friend, today! xx For now, I'm 'sleeping' in the big bed at the Ronald McDonald house! (Not really sleeping... I'm trying to hit Mum and being very cheeky!) I've already had surgeries on my legs, because my bones were not in the right places and not growing the right way.
Those surgeries were huge setbacks and the thought of having to do them all over again is just awful. Dexter’s Femoral Osteotomy Hip Surgery Needed Hurting Hips We Nearly Lost Him Taking off the Brace Brace Pain For the photo version of my stort, you can check out my instagram page.
@lovedexter3 I'm on facebook, too! And, there are videos on my you tube channel. Have a great day! #cerebralpalsy #cvi #nonverbal #wheelchair #childhoodcancer #survivor #hepatoblastoma #love 100 days of school!!!
Today was a fun and special day... we all celebrated our 100 days of kindergarten! We had lots of fun activities. There was paint and necklaces, stickers and pictures. And, icing! I love school! #cerebralpalsy Remember when Mum was told not to bother about me getting glasses? Well... guess what? Thanks to the awesome team at the Eyestore in Kiama... I have a brand new pair of glasses! It's going to take me a little bit to get used to them, but I really like them! As soon as they were put on me, I looked at Mum. Thanks ladies for all your help! The Kiama Eyestore is on facebook or you could visit the Eyestore website. You can give them a call on (02) 4208 3028. Learning to See
My Vision Impairment A Lightbox To Teach Me To See Eyegaze - Cracking Eggs What a Dollar means to Dexter When Wheelchair Stops Being a Dirty Word I’m a Kindy Kid! Dexter's First Month Dexter's Vision Dexter's Cerebral Palsy Dexter's Cancer Return to Home page Find me on: facebook twitter instagram youtube |
Popular Posts
I'm a Kindy Kid! Would you like some cake? We Nearly Lost Him Equal Love When I Was Tiny See The Cancer? I Just Want to be a Mum Who is Dexter? Learning to See And then, they whispered about me Dexter's Comm. Bank account details are:
Dexter Heffernan BSB # 062562 Acc # 10234461 Extra therapies for Dexter. Thank you xxx Our Charity Fundraising:
#DEXTERSMATES for Camp Quality $11,595 raised Dexter's You Tube
Surfing Cancer in Photos Beach Dash Stand Up Paddle Premmie First Month in Photos Dexter's You Tube Books & characters with disabilities here
Find a Beach Wheelchair near you Buy a Yabby beach wheelchair here. "I am tired, I am having a bad patch and I am unsure if I want to scream, get drunk or most likely just pull myself together and get on with it." Kelly Dugan
Archives
June 2020
|