A flood to a trickle…

When Jude was first diagnosed and throughout those first few years this blog was my place to come and dump our story, his story. It was really meant for friends and family so I didn’t have to say the same things over and over – when Jude was going through something this was the place to find out what was going on and how he was.

Then facebook took over and Jude’s many and varied troubles subsided and coming here became less and less frequent and, to be honest, less important.

Jude is in Nottingham tonight, some 70 miles from home (my American friends will think that is just around the corner). Tomorrow he has an operation called a Selective Dorsal Rhisotomy – it should be fairly straight forward and we are optimistic that it will benefit him and us. This operation was only available privately – in the UK we are used to our medical treatment being free at the point of delivery (paid for by our taxes, nothing is really free….except for love). Finding out how much it really costs opens your eyes – but it also created another wave of support for Jude and over the past few months we have been inundated with offers of help to the point that we raised the money and set in motion a plan to raise more in his name (more details on that at a later date).

With that in mind I wanted to come back to this blog and record my thanks in this place, the place where Jude’s story first took on a life of it’s own. I am not going to name check everyone (not least because I don’t know everyone) but this is my thanks to everyone who;

Sang, laughed, ran, walked, swam, ate, joked, gave, cooked, made, worked, played, bought, came, danced, helped, smiled, cried, organised, sold, talked, shared, loved, did all those things, some of those things and some other things I have forgotten.

Thank you

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We’ll be back….

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We are in Nottingham, which is a new hospital for Jude. He’s had a Baclofen test with the drug going right to the sweet spot in the spinal fluid. Or something like that….

The purpose of the test is to see the effects of something more permanent. It only worked for 5 or 6 hours, most of which I missed, but Rachel said words to the effect – if he could be like that all day everyday….

That assessment is enough, we’ll be back.

I hate putting Jude through all this – he has to put up with more than he deserves but this really does look like something that could have a real positive impact on the quality of his life.

Apparently the procedure we’re going for has brought great benefits to children with Cerebral Palsy, particularly those for whom walking is a struggle and painful. Jude will never walk but he can be more comfortable and in its own way, that will be a step forward.

Pre-Xmas Hospitals….

We have spent more time than we would choose in hospitals around Christmas – it’s not fun. Jude makes his debut in a new hospital this week with Thursday’s admission to Queen’s Medical Centre in Nottingham.

It has been suggested to us that he may benefit from surgery to assist with his tone. As he grows, his tightness puts pressure on his body and ours. On Friday he will have Baclofen injected directly into his spine (where it has the most effect) so that we can get a idea about how surgery would leave him. It should only be a three day stay (Thursday to Saturday) but Jude’s been known to misbehave.

If we like the outcome then we are faced with a choice between a Baclofen Pump and Selective Dorsal Rhizotomy. The former available free of charge on the NHS, the latter….not. With Jude’s history there are greater risks associated with the Baclofen Pump which is inserted underneath the skin and pumps the drug Baclofen into his spine. The risks are mainly related to infection…and Jude is red flags when it comes to risk. Selective Dorsal Rhizotomy is a treatment that has shown good results in reducing spasticity and for Jude this primarily relates to his positioning and to help us with manual handling.

I guess if the results are really encouraging from this test then the decision will be made for us – there are very few things that can be done that make a marked improvement on Jude’s quality of life so anything that does crop up merits serious consideration. If there is nothing much to report, we tried, we move on.

Hope they serve decent coffee….

Happy Birthday and a potted history

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.

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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.

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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.

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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.

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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.

p_2048_1536_C3D71C99-5791-4A26-8BED-FF50EBE76E37.jpegIn 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.

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Jude age 3, November 2010

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In January 2011, Jude starts school (age 3 and a bit)

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March sees two developments – his tonsils removed and his hair cut but by April Jude is back in hospital with another chest infection…

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November 2011 – a relatively quiet few months and Jude is 4!

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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…

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And Jude gets dressed up for him summer play scheme prom…

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November 17 2012 and Jude is 5

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And by Christmas, Jude’s room is complete and he moves in

20121223-201855.jpgIn 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

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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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 55,754 views of the blog and still counting

One in the bank….

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Today I put a half marathon in the bank for three reasons. To set a PB as it is the furthest I have ever run so by default a personal best, it gives me something to aim for. As insurance in case anything happens in the next few weeks to prevent me running the Birmingham half marathon. And finally, because I could.

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One of the aims of my fundrasing effort was to get information about Acorns “out there” by asking people to donate and share. Unfortunately, my idea coincided with the ice bucket challenge which went wild on social media. Ho hum.

Acorns provide Jude (and us) with much needed respite – both at their Selly Oak centre and also at home, but they also provide other valuable support to families.

Tomorrow, we say goodbye to Cameron. A young lad who was at school with Jude. Just a teenager, he passed away unexpectedly a week or so ago. He and his mom have been looked after by Acorns over the last week with Cameron at rest in Acorns prior to his funeral. Acorns provide support in life and beyond, to children and their families. They rely on donations and fundraising to provide this valuable support which is why I ask again to please make a small donation and share with your friends.

From Great Oak Trees Come Little Acorns…

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12 months ago I looked at lot like the left picture, 15 stone and truly unfit. Apart from some vague ambition to “get fit” I didn’t really have any aspirations. Now I am a few weeks out from my first half marathon at the age of 44 (and a bit).

I remember most of my landmarks – the first time I completed 5k (in about 40 minutes), the first time I broke 30 minutes for 5k, the first time I ran for an hour continuously, the first time I did 2 hours (which was also the same time I did 10 miles) – absolutely no doubt I got the bug for running. I got the expensive running shoes (good decision), the phone app and even a pair of running tights which I have not yet had the courage to wear outside so take my word for it….sexy. 

When the opportunity came to run for Acorns I knew I had to do it. Signing up was actually quite easy, a few mouse clicks, type a few words and submit. I guess the 13 something miles might take a bit more effort. I have friends who have run half marathons and marathons and I have admired them from afar, marvelled at their dedication while questioning their sanity. Now it’s my turn.

Many years ago I spent some time at Acorns Children’s Hospital in Birmingham, not long after it had first opened, as part of my training to be a mental health nurse. I was early 20s at the time, I found the experience difficult. The words hospice and children together were not something that sat comfortably together for me. When it was suggested that Jude went there I revisited that same discomfort again – but my preconceptions and fears were soon dispelled.

When he was first referred to Acorns, Jude was not a well little boy. Our whole world seem to revolve around him (it still does, but in a nice way now). We never left him while he was in hospital – we would leave him with friends and family but were never far away. Now they were asking us to leave him with them…and we were OK with that because first impressions were so very, very positive. And nothing has changed since.

Over the years we have moved from having one day respite to Jude being in for long weekends and occasionally longer when we’ve needed it. Jude is looked after and we get time to do things that we struggle to do normally – from doing absolutely nothing to weekends away (both of which are very difficult with Jude).

So on 19th October as I take to the streets of Birmingham for my first ever half marathon I do so to raise money for Acorns. Every penny helps so please support my “Give £2 and share campaign” (it was Give a £1 but the justgiving minimum donation is £2). Tell your friends, share, retweet….I want to hit 500 individual donations but I am less than 1/10th of the way there.

Thanks, Ian

 

Acorns Children’s Hospice

To be honest, I don’t really know how we came to be involved with Acorns Children’s Hospice. It was one of many things that were happening to us in the darker days of Jude’s early years. I had actually visited their Selly Oak hospice (where Jude goes for respite weekends) not long after it opened as part of my nurse training but my perception was that it was a place for terminally ill children providing care at the end of life. Our visit there with Jude was one with some trepidation.

Acorns does provide end of life care and has an excellent reputation for the support they provide families at such a difficult time. However, their services are also for children who have life limiting conditions. Getting involved with Acorns was the first time I had understood that phrase – life limiting. Jude was just…Jude but we were beginning to understand how Jude’s complex health needs were going to limit his life. And ours.

As much as I try to avoid it, I compare Jude to other children. I compare him to children his own age who are healthy and well and I compare him to his peers at school who have a range of different needs and there is no escaping the fact that Jude’s problems are complex and numerous and I guess that’s why we were referred to Acorns and there’s no doubt that it has had an incredibly positive impact on our lives.

Jude is fortunate to get a number of weekends in respite every year – two can be booked in the diary at any time. This has meant myself and Rachel have been able to spend some time together, take the boys out somewhere, attend family weddings….or just do nothing. The type of things many families take for granted we are indebted to Acorns for.

Acorns also provide a couple of evenings respite at home each week – 3 hours an evening where Jude is cared for and often spoilt but people who love what they do

Then there is the dedicated support they provide to Jude’s brothers Nathan and Joe – meeting regularly with other siblings and going on days out.

Acorns keeps giving to us and families like us but 2/3rds of their funding comes from donations which is why I am running the Birmingham 1/2 Marathon this year. I am regularly asked to donate to good causes and I know others are too. Rather than set a monetary target for my fundraising I have decided to go for individual donations – 1000 individual donations in fact.

Donate a Pound and Share

The internet is awash with viral campaigns, some more successful than others, some more useful than others. I would like you to donate a pound (or a dollar or a euro or whatever currency you deal in) and then ask your friends to do the same. A small donation multiplied many times to make a difference to so many lives.

Thanks

Ian & Jude

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