Dexter's cerebral palsy is spastic quadriplegia and dystonic quadriplegia.
'Quadriplegia' means all his limbs are affected and 'Spastic' means his muscles can become very stiff and tight. The 'dystonia' means he has uncontrolled movements of his arms, head and legs.
Essentially, they give up on him.
We were told Dexter would be on a gastronomy feeding tube. That's the green tube you see going into the nose or mouth of babies. As a premmie baby, Dexter had one of these. We were told Dexter would never breastfeed, because he hadn't yet developed the sucking reflex. Man, that was a battle! We had to fight for the chance to let Dexter try to breastfeed. The medical staff were against it, saying he couldn't suck. They doubted Dexter. There were many tears and much frustration and hours of trying and persevering...
But, Dexter wanted to feed... and so, he did!
Dexter loves his food. He can be stubborn about who feeds him, but he loves food. He needs his food to be soft and mashed, but is getting better and better at eating. Unfortunately, he grinds his teeth. He doesn't have much in the way of molars, because of the grinding, so eating harder foods is difficult.
Drinking still poses some problems and we are very careful to monitor the amount of liquids Dexter drinks.
During chemotherapy treatments, Dexter's chewing and eating development suffered a huge set back. The chemotherapy drugs caused mouth and throat ulcers, and Dexter went back to eating pureed food. Many children undergoing chemotherapy end up on a gastronomy tube, but Dexter didn't.
So, we taught him how to roll over.
We push Dexter and help him be his best. We work every day on his physical development. And, his physiotherapist, Zoe, pushes Dexter. She adjusts her expectations each time Dexter achieves his little steps in the long road to walking and sitting. And, Dexter pushes himself. That little boy pants with exertion, he pushes himself that hard.
Dexter's hip surgeries caused significant set back in his development.
The specialists advised it might take six months for Dexter to return to where he was pre-surgery, after his muscle release procedure. Six months! And then, after the femoral osteotomy, Dexter would be set back at least 18 months.
Together, that was a two year set back! Dexter was four. That was half his life. That's a huge setback. It felt like so much wasted therapies. So much needless heartache.
Dexter had to learn how to roll over, all over again.
He had to learn to hold his weight, again. He needed to learn to take steps and to push forward with each step. He needed to rebuild his muscles and core strength. He had to learnt to hold his head high, again. He needed to learn to bear his weight and sit, again. He needed to start all over again.
It's just heartbreaking that he has to try so much.
Someone once said
'What a special needs child can do today was once a dream...
a hope, but is now a reality'.
We see this in Dexter.... And so, we continue to push and encourage and support and hope.
Dexter may have been classified as level 4-5 spastic quadriplegia and dystonic quadriplegia, but no one told Dexter!
Life's tough for this little guy (and that's not even considering the cancer!)
but he is a tough little guy and we'll never give up on him!
This poster has cerebral palsy information, and an explanation of Dexter in relation to some of the facts on the poster follows.
- At the moment, Dexter is non-verbal. He has communicated hunger a few times, and we've heard 'more', 'off',"Mum' and 'Dad'. When he's in pain, we do hear 'ow' - (ouch without the ch). That one's heartbreaking. We praise him for using his 'words' and hope he will find lots more words one day.
- We hope Dexter doesn't feel pain from the cerebral palsy. Some nights are bad cerebral palsy nights, but hopefully, he has been mostly lucky enough to avoid this. On the bad nights, Dexter cannot go to sleep and his muscles tighten until they are solid cords inside his little limbs. We have heard of children with cerebral palsy screaming in pain while driving. Dexter is lucky and travels well, apart from motion sickness.
- 1:2 has an intellectual impairment' - This is a little difficult to assess yet. Dexter's vision impairment and lack of words makes it tricky to tell..., but Dexter shows understanding. He has a fun sense of humour. He is cheeky. He learns instructions quickly and already knows that a kiss on our cheek will most likely see him getting his way.
- He does have a vision impairment. Cortical Vision Impairment. More here.
- He does have trouble sleeping.
- He does have bad saliva days. Some medications seem to make this worse, and his Bowen Therapy Massages helped to reduce his drool. While he is still in a spitting for fun stage, its hard to determine just how much control Dexter has over his saliva.