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Friday 16th March, 2018 This will always be an important date to me.  It is the date my courageous, beautiful daughter (I'm not talking about looks here but the essence of who Ashleigh is) had a section of her brain surgically removed by choice.  To her though, I don't think she felt it was a choice.  If she wanted a chance of a future that she had some choices and ability to plan for, without epilepsy taking over and getting in the way, then she needed to do it. Dr William Bingaman is the Neurosurgeon who completed Ashleigh's surgeries.  Ashleigh took to him straight away.  He is a joker and a confident man but he also really wanted to understand Ashleigh to see if she could cope with this.  He loves getting her fired up abut sport. Dr Imad Najm is the Epileptologist who the Director of the Epilepsy Unit here at The Cleveland Clinic.  He is who first accepted Ashleigh coming over here and has been in charge of her case.  He said they are ...

This is going to be a very short post and my apologies if I'm not getting this right with the blog - it's not something I've done before this experience. I can honestly say that the last week has been one of the hardest of my life.  Ashleigh was good for the first two days after surgery and it blew me away just how well she could function after what had been done.  She was off all epilepsy medication from Thursday morning.  Apparently it is completely normal not to seize for a number of days after electrodes have been implanted. From early Saturday morning (about 2 am) Ashleigh started experiencing pain.  There were periods she was good but then the pain would come again.  She talked about it being an 8 on a scale from 1 - 10.  She started seizing on Monday night and had 5 in 24 hours.  After 2 they put her back on her epilepsy medications.  On Tuesday they came and did a stimulation test to see what part of her would be affected by removing...

We arrived in Cleveland just before midnight on Friday 23rd February.  We had access to our permanent accommodation from Tuesday so had booked an apartment within walking distance of The Quicken Loans Arena as we planned on going to the Cleveland Cavaliers NBA game on Sunday together as a family prior to Ashleigh's admission on Monday.  We also went to Kid Rock on Saturday night (worthy of a blog all on it's own!).  Ashleigh didn't come - she needed some space after sharing a room with Joseph for a week, was tired and just needed time to herself understandably. The NBA game was an experience - there is always something going on for any breaks in the game.  Going to any event in America makes you realise how lucky we are in New Zealand.  There is full security including making you empty the bags, not touching anything themselves and top it off by going through metal detectors.  The Cav's lost and were a bit disappointing because they clearly dropped ...

Ashleigh saying goodbye to New Zealand. We left New Zealand at approximately 6:50 am on Saturday 17th February to head off on what is going to a life-changing experience for us all - no matter what the outcome of the investigations at The Cleveland Clinic may be.  At least at the end of all of this Ashleigh will no longer be in a holding pattern, waiting for the next test or possibility of help for this condition that is much more debilitating than anyone realises. So it is with excitement that we leave, even though we know there is the very real possibility of a brain resection (removal of tissue) in Ashleigh's near future.  We flew to Brisbane with a stop over for a few hours and then on to Los Angeles - arriving before we left New Zealand - just after 6 am on Saturday 17th February. In the States, check out of your hotel is later than at home so check in is later.  We picked up our rental car (another difference - you're not allocated your car but select...