One thing we didn't realise, when we brought Dexter home, was how much research we would do. When we first heard he had cerebral palsy, we googled it.
And since then, we have become researchers.
It seems, after every appointment, we are given a different cerebral palsy diagnosis, or a new medical term.
It's frightening, to be surrounded by words you do not understand.
It's intimidating, when you do not understand the diagnosis your child has been given and have no idea how to best help and provide for them.
We are so lucky that we are well educated and feel confident in our ability to research and learn.
We hear about new treatments and have to learn about them, to decide whether they might help Dexter.
There is so much equipment and technology available It's important we know about these, so we can best help Dexter.
When we started researching Cortical Vision Impairment, there was almost no information. We want to help change that. It motivated us to raise awareness, so families like us, just starting their journey, may be able to find information.
After five years, we have found that many of the confusing medical and diagnosis terms now fall easily from out tongues. We feel much more confident about Dexter's cerebral palsy, vision and medical terms. We've had enough hospitalisations that procedures and tests are now familiar.
Being able to understand what is happening and what might happen next, is very reassuring, even when the procedures might be frightening.
So, today's challenge...
Research these terms and try to use them in sentences during the day:
- peri ventricular leukomalacia
- spastic dystonic quadriplegic cerebral palsy
- coreo athetoid
- cortical vision impairment
- CT scan
- femoral osteotomy
- adductor release
- calf lengthening
- botox (in regards to cerebral palsy)
- oxygen therapy
- conductive education