Sunday, April 26, 2015

23 days to go

23 days until we have to lean over the edge of a cliff at 80 ft and abseil to the bottom!  Shane Jeffery Kate Davies Phillip Butterfield
I'm actually afraid of heights but have renewed energy to face my fears today! Corey had an MRI scan under general anaesthetic but before that he had a trial in the scanner, awake! 
MRI scans are annual affairs for Corey to check his brain and spine to see if there have been any changes, but due to some behavioural changes this one has been brought forward to 5 months. 
He has to have general anaesthetic as you're not allowed to move during it and the scan takes approximately 45 minutes. As Corey is a high risk anaesthetic due to narrowed airways and possible complications caused by MPS, these are always done at  Bristol Royal Hospital for Children.
We went to a pub for a carvery dinner tonight (after hospital visits Corey has free reign to do anything he wants!) He said he liked it there but didn't like hospital. I asked if he was scared at hospital and he said "No, I just don't like it when they pull my skin off" meaning pulling the plaster off and taking the cannula out before we can come home!
So, if he can do everything he's done today and not feel scared and still have a smile on his face, I'll be smiling my way down a rock face thinking of how amazing he is and that I'm doing it to raise money for The MPS Society who will eventually find a cure for this disease that puts my child through so much.
Please donate at www.justgiving.com/mpsabseil

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