I started Jude’s blog back in March 2008 a few weeks after first learning of Jude’s diagnosis. Back then, we certainly had no idea what the next few years had in store. There was some pretty aggressive drug therapy in those early months to try and control his seizures and despite some encouraging results with ACTH (a steroid which was a very unpleasant experience for him and us) ultimately it did not work and he continues to have his seizures every day – small mercies that by and large they don’t bother him.
From May 2008 when Jude was experiencing some of the effects of the ACTH; the so-called moon face. This smile was a welcome respite from what was mostly screams and distress. Around this time we were persuaded that Jude needed to be tube fed – I became quite proficient at reinserting the tube when he sneezed it out!
We had reached about 1000 hits on Jude’s blog in April 2008 which I though was amazing – and we had picked up followers from across the world. Jude was getting his own fan club and it was much appreciated.
Summer 2008 and things have settle down a little and we take a holiday in Scotland with Rachel’s parents. The previous few months had been little short of hellish but we had finished the aggressive drug treatments for his seizures but it was on this holiday that we noticed the return of his seizures. I still remember seeing the first one on their return – although disappointed, it was resignation that was the overwhelming emotion. We would try the ACTH again but it would not work – although all the unpleasant side effects were out in full force.
A video of Jude a few days before his first birthday – and what a year it had been. Getting to his first birthday had been an achievement it its own right.
2009 started much like a lot of 2008 had been – in hospital with a chest infection.
February 2009 not long after his discharge from hospital with serious chest infection and we’re being told that Jude needs to be permanently tube fed as he is aspirating food into his lungs – not good for long term lung health and probably contributing to his repetitive chest infections.
So in April Jude gets his tube fitted into his tummy (a procedure that was to be repeated in June) and it is also around this time that he learns a new trick in response to any pain – breath holding. The breath holding days were not fun. June 6th was a bad day, Jude held his breath for about 4 minutes…there was a moment when we thought it was as serious as it could be.
Jude – November 17th 2009, his second birthday. 2009 was not a good year and it wasn’t about to get any better. A few weeks after this photo was taken Jude deteriorated rapidly with a chest infection, a collapsed lung and ended up on Intensive Care.
In April 2010, Jude had a fundoplication – an operation that deals with reflux. Despite some shaky moments with pain related breath holding, the outcome is good and we start to see real improvements in him. The smiles begin to flow freely as Jude, for the first time in his life, is free from pain.
Jude age 3, November 2010
In January 2011, Jude starts school (age 3 and a bit)
March sees two developments – his tonsils removed and his hair cut but by April Jude is back in hospital with another chest infection…
November 2011 – a relatively quiet few months and Jude is 4!
Another chest infection in February 2012 and in June, Jude has a Vagus Nerve Stimultor fitted to try and gain some control over his seizures. Both admissions relatively incident free.
In August work starts on Jude’s room…
And Jude gets dressed up for him summer play scheme prom…
November 17 2012 and Jude is 5
And by Christmas, Jude’s room is complete and he moves in
In May 2013, Jude’s blog went into meltdown and it wasn’t even a post directly about Jude. This post which came after Wolverhampton Wanderers were relegated again saw nearly 1000 hits on the blog in the space of a few days.
November 2013 – Jude is 6
Christmas 2013 wasn’t the best, Jude was unhappy and as we rolled into 2014 a partially dislocated hip was diagnosed which has started us off on a new journey. Minor operation throughout 2014 have provided him relief but we are faced with a 2015 consisting of one, maybe two, large operations to deal with his hip and his ongoing spasticity which makes his hips worse. But 2014 has been good to Jude, probably his best year yet. He has earned it.
November 17 2014 – Jude is 7. Happy Birthday my brave little man.
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