22 days to go

22 days to go!  Shane Jeffery Phillip Butterfield Kate Davies
Today I want to tell you about Corey's spine.  
Corey has spinal cord compression at the very top of his spine.  
In medical terminology they call it a 'craniocervical abnormality with significant narrowing of the spinal canal at C1/C2'.
C1 and C2 are your top 2 vertebrae, under the 'peg' which your skull sits on. Your spinal cord is protected by surrounding spinal fluid in the spinal canal. In Corey these 2 vertebrae aren't formed properly and are pushing into the spinal fluid canal not allowing a big enough gap for the spinal fluid to flow through and are therefore too close to his spinal cord.
If your vertebrae touch / compress your actual spinal cord then you could suffer with temporary or permanent paralysis. Because it's the very top of Corey's spine it would mean paralysis from the neck down.
To prevent compression of the spinal cord, our neurosurgeons can perform an operation which would shave some bone off and fuse together the vertebrae - C1 and C2 which would stop them from pushing into the canal any further. This would prevent growth and turning of the head. IF they were to perform this operation now, Corey would need to wear a 'halo' - a frame around the head which sits on his shoulders which acts as a plaster cast for the spine whilst it heals. 
Corey is monitored closely with annual MRI's and 6 monthly clinic visits and any changes are flagged up, hence why he had an MRI yesterday.
Corey is not allowed to trampoline, do forward rolls and any activity which could cause a whiplash type injury or jolt his head / spine.
Despite this we try to ensure Corey is as active and participates in as much as possible but occasionally you may hear me screeching at him to stop or get down or him being upset that I've told him he can't do something!
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