All for a good cause….

 

On June 1st I will be running 8.5 miles for Jude’s friend Alfie’s charity Friends of Alfie Johnson who help children with disabilities. Alfie and Jude go to school together and it was the idea of doing something for charity rather than giving to someone else who was doing it that drove me to lose weight and get fit. 3 stone lighter and now running 10 miles regularly and I am counting down to the Great Midlands Fun Run next month.

Unfortunately there are no on-line donations for this but please pledge a donation to me by email (ian.marrey@gmail.com) and if I have any energy left I will track you down after the event. 🙂

Buoyed by my efforts in recent months I have also signed up to do the BUPA Birmingham Half Marathon in October, this time running for Acorns Children’s Hospice who provide Jude and our family with so much support so apologies in advance as I will be asking again later in the year.

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Hip! Hip!

The effects of Jude’s hip injection a couple of weeks ago are….mixed. His knee which was pulled up and the sign of a problem has come down and is more like it was but he is still not quite right. Is it pain or is it behavioural but we cannot get him to settle in his pushchair which makes going out a chore.

Back in the old days, when all Jude did was scream, we rarely travelled far but over the last few years we have had relatively few problems but now even driving into town is a major event. After an uneventful 2013, this year is proving that even the simplest tasks are magnified – and we may not be finished.

The surgeon is still contemplating the more significant surgery which will require Jude to be in a hip splint for 6 weeks or more – I dread to think how he will react to this. As a family, even this relatively minor set back of the last few weeks is having a major impact on our day to day lives. Going out together is no longer the norm, it is the exception.

We have increased some of his medication, Baclofen, to see if it improves his muscle tone and they are also considering a Baclofen pump, a small device implanted in his abdomen which would send the drug direct to his spinal column. With that pump under his abdomen, his Vagus Nerve Stimulator under his chest and his GI tube into his tummy Jude risks becoming more machine than boy 🙂 RoboJude.

And to cap it all off he has a loose tooth. I can’t even bare to look at it. I have feeling we may well be finding it in his nappy which will make the tooth fairy shudder.

Happy New Year

When I rule the world I will scrap January.

Jude’s up and down Christmas looks like it was due to a partially dislocated hip – not wind, stomach pains, tooth ache or any of the other maladies we thought it might be. An admission to hospital and x-ray last weekend confirmed that the ball was coming out of the socket and surgery is required. After completing a year without any hospital stays in 2013′. Jude looks set for surgery in 2014 followed by a lengthy period of recovery.

Looks like the blog is in line for a workout in the next few months!

Jude is 6

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Six? Hard to believe at times when this young man seems to have had a lifetime of experiences already. Jude might not have understood what the fuss was all about but he definitely knew there was a fuss and that he was at the centre of it. Friends and family came around and all of them in one way or another have played their part in getting from there to here.

Then there were those who weren’t there but appeared on Rachel’s Facebook page, people we have met on the way – sometimes only fleetingly – who sent birthday wishes. Jude may have had his challenges and he will have more to come but nothing brings more pride to a parent than knowing your child touches the hearts of others, that your child can bring out the very best in people. Jude has done that time and time again.

In the past I have recoiled when children like Jude are described as ‘special’ – I always heard ‘different’ – but I think I am beginning to get it. Jude isn’t special because of who he is or what he has to face, Jude is special because of how he inspires others, because of the joy and happiness he brings so effortlessly. These are qualities that so many aspire to and my son makes it look easy.

What a fortunate family we are.

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I’ll protect you from the hooded claw, keep the vampires from your door

Spare a pound?

http://gogetfunding.com/project/luis-living-life

I am a parent governor at Jude’s school, every term I get to go and spend some time in a lesson, they are inspiring times and I always leave feeling so positive and it reaffirms our decision to send Jude there. 

This term I was in a class with one of Jude’s old class friends Luis and we spent an hour building things – or I spent an hour building things, Luis knocked it down. 

Luis’ mom is raising money to buy equipment for Luis that will be life enhancing. Play equipment that is a few hundred pounds for most kids runs into thousands for our kids. Just a little from many people will make all the difference – so if you have a spare pound knocking around in your bank account..