He's got a couple of choices...
Surrender to the cerebral palsy, and live a limited life on the sidelines, or push and work and strive to push the boundaries and enjoy everything he can access.
Dexter's choice has always been to fight.
If he's so determined, we need to step up and keep pace with his determination.
It's not easy... and it takes a lot of time and money, but we'd be letting Dexter down if we didn't keep reaching forwards.
A typical day for Dexter
When Dexter wakes, he's pretty hungry and milk is needed pretty quickly. While he's 'non-verbal', he's not silent! This little boy lets you know when he's hungry... unfortunately, it's with whingy-whining, not words! (We're working on the words.)
Dexter needs to be hand fed everything. He's eating pretty well, considering there was talk of sending him home on a gastro feeding tube. His food is getting chunkier, and his chewing and biting is developing.
Because of the cerebral palsy, eating can take a while.
The amount of liquid Dexter drinks each day is monitored, in an attempt to prevent further bowel issues. Last time he suffered bowel issues, he had an emergency helicopter flight to Sydney! Because water is difficult for Dexter to drink, without choking, he drinks diluted juice. He drinks from a bottle, which has to be held for him, though he has shown beginning signs of wanting to hold the bottle himself. Being non-verbal, Dexter does not ask for drinks throughout the day, so it is important that we remember to offer them to him.
Dexter did suffer from very severe reflux, until he was two years old. He still throws up his breakfast some days, but not as often as he did. We need to be ready for this, as he does not have the words to tell us when he is sick, and he cannot move himself out of the way, after being sick. Sometimes, he will use noises to call out to us, knowing we react to his attempts to 'use his words'. After breakfast, Dexter usually goes in his standing frame for up to two hours. Post his hip adduction surgery - to release and stretch the muscle in his leg, Dexter was back to only 30 minutes. He's spending more and more time in his frame each day, building back the strength and muscles he needs. Using the standing frame helps Dexter with his toileting, too. When he's in the standing frame, Dexter is developing his hand strength, and learning to use his hands to play and reach for items. He now loves to throw his bowl to the floor, and all his toys end up across the room. For a little boy whose thumbs were locked inside his fists, this is an amazing development. Dexter's hands now find us, and hold on to us. This feeling is priceless. By the time Dexter is out of the standing frame, he's ready to be fed morning tea. |
With the standing frame therapy done, Dexter gets a little play time, before the rest of the home therapies take place. These alternate, depending on the day, and any other events and appointments taking place. He is starting to get back into his walker, and is very slowly re-learning to use his feet to move it. Before his surgery, Dexter was making great progress, but we are back to the beginning with the walker again now. He'll get there... He just needs to build up his muscles again, and remember that he is in control of the movements. |
Dexter has his fully modified bike, which he enjoys, as we still pull him around on it. He was starting to flick his ankles as the pedals moved around, showing signs he was developing awareness of his ability to move the bike himself, but again, surgery set us back. When we put Dexter on his bike, we take him around the block and through the neighbourhood streets. |
Dexter has his theratogs, which once on him, help him to 'feel his muscles' and learn to better use them to move and sit. When he is in his suit, Lenice helps him with sitting and crawling, kneeling and standing exercises. We were seeing notable improvements in his movements, as a result of wearing the theratogs, but he was not able to wear them while he was in his casts. He can wear these under his clothes, which will be possible now the weather is becoming a little cooler. (Read more about his theratogs here) |
Dexter is starting to realise he can make his floor surfer move, too. It moves most easily on the kitchen tiles, but the room there is quite small. We are using the roller sideways at the moment, as that works best for Dexter. We're teaching him to bend his knees and kick off the ground, while reaching forwards with his hands... and keeping his head held high. And sometimes, just for fun, we put Dexter on his back on the roller, and push him with his legs. We chase his sister, who laughs and runs away from him. Dexter should probably wear a helmet, as we go pretty fast, but it's nice for him to chase his sister, and its good for her to be running from Dexter. She knows Dexter is different to her. She knows he works really hard, but isn't able to do the things she does. (Read more here.) |
If she's doing the stretches correctly, they will hurt Dexter a little. He knows this... he's patient (mostly) and works with Lenice.
The exercises are to help him learn to move... crawl, kneel, stand, walk, and move from a kneeling to standing position.
When there's a chance, therapy is also done for his vision development, which can possibly be improved until he is about eight years old. (Read more here) The board with the coloured strips of fabric is constantly used. Dexter is currently looking at two colours on a solid background. (He was looking at just the one colour, but Lenice has pushed him on to looking at two. The colours were being changed daily, but with two colours, they are staying on the board for a week before being changed.) He also has braille books and his home made 'feely' books, which can be read to him. |
It's important Dexter learns to play. After all he endured in his first two years, and with the difficulties and challenges of cerebral palsy, he can be a serious little boy. His cerebral palsy limits the movement and strength in his hands, so he needs help to hold toys, press buttons to make noises and to actually play with them. He loves music and dancing... yep, dancing... he moves a little differently when good music comes on, and that's dancing. |
Because of his cerebral palsy, Dexter usually has trouble sleeping, and also because of his age, he rarely sleeps during the day... though he is usually put in his modified bed for some resting time during the afternoon. This is Lenice's one chance to rest. Because he often doesn't sleep during the day, he sometimes falls asleep while he is in his walker, or while he is eating dinner. That makes things more difficult and frustrating. His bed is a hospital bed, which can be lowered and moved to best suit Dexter and his needs. |
Dexter needs to be fed lunch and dinner. Meal times are used to teach Dexter to speak: more, hungry, yum, drink, no. They are also times where chewing and biting are taught and reinforced. Some days, Dexter is taught to hold his spoon. He has become much better at doing this, and knows to put the spoon in his mouth. Sometimes, his head moves too much, and that makes it very difficult for him to try to feed himself. He cannot feed himself, but with the ongoing home therapy he receives, he is making tiny progress. On his best days, he only needs his wrist to be supported, and can then put a modified spoon, full of food, in his mouth. |
After dinner used to be the time when Dexter was sat on the toilet. He needs to be held, so Lenice cuddles him (and the toilet bowl) to help him. He was having great success, until this routine was stopped because of his hip adduction therapy. Now, Dexter's routines are all over the place, and we will need to work on getting him back to being able to use the toilet. We've looked at modified toilet/shower seats, but knowing they will be thousands of dollars, we'll have to keep holding him (and the toilet) for now. |
in the lounge room, using a bowl and a wash cloth. Now, he's back in the bath! Because his sister eats faster than he does, she is ready for the bath before him. Once Dexter hears the bath water being run, he will usually stop eating, and move around in an attempt to get out of his chair.
He's desperate not to miss out on a bath!
Bath time is a chance for more therapy. We try to teach Dexter to kick off the edge of the bath, and slide up the length of the tub. He's learning to kick off... slowly. We also use this time to slide him up and down the length of the bath, for fun. He's pretty tall now, so his legs are bent up and we use them to push and pull him. Dexter doesn't realise that while he is having fun, he is learning to bend his legs again, after them being straight for so long in his casts. |
This is when Lenice goes to her checklist, and ticks off the exercises and therapies she has been able to fit in to their busy day.
On the days Dexter has therapy with Zoe, Lenice can have a rest day... A day when she does not have to worry about being a therapist.... A day when she can just be a mum. Dexter and Zoe respect and trust each other. If you're in the Kiama area, and you need a physiotherapist, we couldn't recommend her highly enough. If we were rich enough, we'd have Zoe and Dexter working together every day. Though, Dexter is starting to get a bit cheeky, and whinges at Zoe. Luckily, she loves him and she pushes him. She forgives his whining and whinging and helps him be the best he can be... and for that, Dexter loves her. |
On the weekends, and sometimes with Zoe, Dexter does hydrotherapy. (...Even though specialists in Sydney recently said hydrotherapy would probably not work for someone like Dexter. Dexter's is one of the worst classifications of cerebral palsy. Sometimes, that limits people's expectations of him.) Dexter loves the water. He loves swimming. He splashed and kicked so much during one of his hydro sessions in Sydney that the therapists couldn't see, for the water in her eyes. (Hydrotherapy is no good for someone like Dexter - whatever!) |
The next day, they wake up and do it all again! Dexter's life with cerebral palsy is very tiring and difficult. But life with Dexter, is beautiful. He stills laughs most freely when Andrew blows raspberries on his tummy. He loves us all... and works hard to show us what he can do... to make sure we are proud of him. And we are proud of him. Constantly. |
I write the words that tell Dexter's story.
Carol