This year has been a year of growth and raising the expectations of what Dexter can do. There have been a few tough moments, but over all, 2017 was a great year, for Dexter.
Here's his 2017, in review.
Dexter started school!
While we were a little anxious, Dexter embraced every opportunity. He loved it! He loved the learning, the activities and the other kids.
Previously, Dexter had tired easily and slept in the afternoons. We thought school would be exhausting for him, but it had the opposite effect. Dexter was so stimulated by the learning and the school activities that his energy level increased.
He learned the sounds of letters, so his 'talking' developed a much wider range of sounds. He had more to say, and became very vocal.
Dexter's vision improved. While he started wearing glasses for being short-sighted, Dexter's ability to understand what he was seeing improved. His cortical vision impairment is a result of his brain damage; the messages from his eyes to his brain get lost. Because he was spending so much time focusing on activities in the classroom, his vision improved.
He 'looks' more often. He finds objects faster and can maintain focus for longer.
Dexter still uses his eyegaze system, operating an iPad with his eyes. He has shown greater control with this system and uses it with confidence.
Dexter's grip has also improved. His fingers are more relaxed and open more easily. He can hold on to pencils and other objects for longer periods of time and is able to release these objects faster. Dexter enjoys writing. (He can't use his words to tell us what he would like to write, which frustrates him.) A pencil is held in his hand and his hand is moved, to form the letters, but Dexter recognises what he is doing. He enjoys writing his name. When Dexter writes things he is interested in, he writes with a relaxed hand. If he's not interested, his hand tightens up and the writing is difficult.
We've noticed that Dexter becomes bored in the holidays. He misses the stimulation of school. He has trouble falling asleep, because he hasn't been 'busy' enough. We're going to have to come up with some ways to stimulate his learning during the holidays.
(Kindy in review - post)
With school, Dexter went on his first excursions. He loved riding the bus, with his friends.
Dexter marched in his first ANZAC march, with his school. He proudly wore his great grandfather's medals, somehow understanding the significance of them. His dad pushed him through the local streets.
He loved joining his first athletics carnival. His mum helped him over the hurdles and his teacher made sure he won his second 100m race, in his wheelchair. This was a moment when his mum heard the crowd calling out to Dexter, cheering him on. The crowd support was heartwarming and we are grateful for the people who see the strengths in Dexter.
He joined the school Color Run, Easter Hat Parade and the Book Week parade.
At the end of the year, Dexter's efforts were rewarded with a Certificate of Excellence. And then, he received a special Citizenship Award.
We couldn't have been prouder.
Dexter loves school and will be very excited to return in 2018.
At his annual cerebral palsy review, we were told that Dexter would be needing further surgeries on his hips.
This shattered us.
At the meeting, his mum couldn't stop the tears from streaming down her face. Dexter has already had muscle release surgery and a femoral osteotomy. His hip has already been dislocated, the femur cut, twisted and screwed back into his hip socket. Dexter has already had a total of 11 weeks in leg casts, with his legs locked into position. Dexter has already screamed in pain, for a week, recovering from his hip surgery. And now... Now they are saying we have to do it again.
Already.
It shouldn't be needed until he is a teenager. But, he is going to need it very soon. And, he will need the surgery on both femurs. He has already been set back over two years in his progress with walking, standing and sitting. This will set him back even further.
We are not ready for this.
We don't know if we are strong enough.
We nearly lost him, last time.
We hate cerebral palsy.
To help us hold off on the surgery, Dexter was sent for botox injections. These went in to his hands and hips. The hope was to help his hands relax, so they can open and close more easily. It was hoped they might help his hips to stay in the correct position. His muscles tighten, so his leg pulls in the wrong direction. This leads to the dislocation.
Dexter sleeps with his legs tied into a special system, keeping them in a good stretched position, all night. (Or, until he can't take it anymore and calls out.)
We're careful about the way we position him in his chairs and wheelchairs, to help maintain good position and correct positioning.
Dexter has arm splints and wrist splints, to help his muscles stay in the correct position. We had to fight for Dexter to get arm splints. We often have to fight to get access to therapies or equipment.
In 2017, we started him on baclofen. This is a medication we have avoided, until this year. The medication relaxes his muscles, which is good for the muscles tightening and twisting his hips and wrists into the wrong position. But, it also relaxes the muscles that help Dexter sit. And eat. And swallow. And breathe.
The first time Lenice gave Dexter his baclofen medication, she cried. She apologised to Dexter, for giving it to him. He laughed back at her.
Dexter is still on melatonin, to help him fall asleep. His tight muscles and lack of control over twitching make it difficult for him to fall asleep. Even with the medication, Dexter will often be awake until 11 or 12 at night.
He was lucky enough to go to the snow, enjoying some time in a sit ski. He had to be carried, a lot (up a lot of stairs) but he had a fun time.
He did the local Color Run, with his family.
Dexter was on the ice skating in his wheelchair. This was fun! He was lucky enough to do this twice in 2017.
He made friends with a snake, which wrapped itself around Dexter and his wheelchair. Dexter loved it, smiling and showing such happiness.
At Halloween, Dexter dressed up as Hank (a goalie with the New York Rangers ice hockey team) and loved being pushed through his local streets, trick or treating. He was calling out, using his words and loving the fun atmosphere in his neighbourhood.
He loved Christmas, this year and got lots of noisy toys.
Because of school, Dexter was invited to a lot of birthday parties. It was so touching, the way so many parents contacted us, making sure Dexter was included in as many activities as possible. So many people catered foods he could enjoy and made us feel so welcome. Dexter loved the parties. He loved being with his friends. He loved hearing them call his name.
And, Dexter's favourite song is the birthday song... it means cake!
Dexter also enjoyed another Music Makers' concert. He loved dancing on stage, even making his mum let go of his hands, so he could dance all by himself. He was exhausted by the end of it, but had such fun.
2017 was incredible in one particular way. (*almost!) This year, Dexter had no unplanned hospital visits (*until the second last day of the year!). He had no ambulance rides. He had no overnight hospital stays! (until the second last night of the year!)
This year, a pretty powerful flu bug went around. We all got sick.
Dexter didn't.
He got a runny nose and a cough, but was otherwise ok. He did get the flu vaccine, which must have helped.
*EDIT - On the 30th of December, the second last day of the year, Dexter went to hospital! We were so close!! We wrote this post one day too soon.
Dexter had a cluster of seizures. His whole body shook and his breathing was 'off'. People with cerebral palsy often suffer from seizures, so they have always been in the back of our minds; a dread, something we worried about.
Watching him have these seizures was awful. We spent the day in Emergency, where Dexter was feeling strong and cheeky, again, and tests were being run. Blood results showed there was no infection, which means the seizures are most likely something related to his cerebral palsy. This means, we may be facing a future of seizures. Our hearts are broken. Again.
But, we will dust ourselves off, collect the shattered pieces of our hearts and keep going, ready to face whatever comes.
This Christmas, we asked Dexter's friends to help us collect iTunes and google play cards or movie vouchers. We were able to collect $1,500 worth of vouchers. These were taken to the Wollongong Hospital's Children's Ward and NICU, to be handed out over the Christmas period. Thank you to everyone who supported this idea.
Dexter continued to work with his physiotherapist, who he adores. She believes in him and he absolutely trusts her. Most days, he works hard to do all of her exercises. Some days, he is stubborn and settles in for sneaky, cheeky cuddles. She's like family and we love her. All money donated to Dexter is used for physiotherapy.
Dexter has loved his swimming lessons, too. This is hydrotherapy and has given Dexter his only male therapist. At first, watching Dexter in the water was frightening. He had already had several hospital stays, recovering from pneumonia. Sometimes, the pneumonia was because he swallowed saliva or fluids into his lungs. We remembered these times, when Dexter put his face in the water. Now, Dexter is confident and strong. He has learned so many important skills and loves his swimming time. The water at the Shellharbour Swim Academy pool is warm and Dexter swims with almost no one else in the water.
Dexter and his swimming teacher have also enjoyed some time surfing.
The Hair Colouring day was fun, too!
This year, Dexter finally got his therapy spa. We had hoped to get him a therapy spa for a long time. He has always loved the water, but getting him to a local pool wasn't easy. Because of the likelihood of him aspirating water into his lungs, he can't really have a lot of people splashing near him. The water at our local pool was too cold for him and we felt constant stares whenever we went swimming. So, we planned for a therapy spa. The water is excellent for his muscles and, in the water, Dexter is able to feel freedom from his cerebral palsy stricken body.
This summer, Dexter swims most days. He needs constant supervision, but the joy is so easy to see.
Dexter has thrived, this year. He has had a big growth spurt, so we are looking at having to replace his wheelchair, walker and his standing frame.
He has put on a little weight, too, which is awesome.
During 2017, Dexter lost a bunch of teeth. We are not sure how many, as most have been swallowed by him. They fell out before we even knew they were lose!
We're not sure whether Dexter believes in the Tooth Fairy... he rolls his eyes when we mention Santa! But, maybe he's happy to play along with the Tooth Fairy, so he can get more money! Dexter's cheeky like that!
This year, Dexter met some beautiful young people. So many people at school saw him for his strengths and his personality. They casually slung an arm over his wheelchair, had conversations with him and held a hand on his arm.
Dexter loved that. He also loved having people saying hello to him, wherever he went.
In 2017, Dexter has felt very loved.
The family need to build a ramp and some decking to finish the therapy spa.
A new van will also need to be purchased. This will be a massive cost to the family. The van will need to be purchased and then modified, to allow for wheelchair access. This will be at least $100,000.
So... if anyone knows a car company, who need to donate a car for charity deductions, we would love to talk to them!
(Or, you know... anyone who has a million billion dollars!)
Dexter will also likely have surgery. We're hiding from this, right now.
Whatever happens, we are sure 2018 will bring some heartache and a whole lot of fun and adventure.
Thank you for supporting Dexter, this year.
We hope you all have a wonderful 2018.
Carol
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
Stuck in a Rut
Embrace the Lion
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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