Jude Marrey's Blog

Vagus Nerve Stimulation

ianmarrey — Fri, 11 May 2012 17:54:15 +0000

Jude’s been to see another doctor today and we’re looking at August surgery to insert the little device in his chest to stimulate the Vagus Nerve and possibly assist in the control of his seizures. Although I’m sure it won’t cause him any discomfort and may well prove to be beneficial…apparently I’ll be able to see and feel the device underneath his skin. I must say that sort of makes me feel a little but….like this.

Jude’s had another visit from Acorns Hospice at Home who provide respite care for a few hours once or twice a week after school. Jude really enjoys their company

Just like the old days

ianmarrey — Tue, 08 May 2012 20:30:53 +0000

Following on from the Jude yawn – then and now….the little pulled something else out of the bag tonight. Unfortunately the picture doesn’t do him justice but he got his head right up and was having a good look around, exhibiting some real head and neck control.

Poor kid, now I’m going to make him do it every day

Vote for London Mayor – Jude Marrey

ianmarrey — Wed, 02 May 2012 18:01:50 +0000

On 3rd May, London goes to the polls to elect its mayor.

While I was going through some of Jude’s photos I noticed something quite unnerving…

Boris Johnson – London Mayoral Candidate

Jude Marrey…err, my son

A reminder….

ianmarrey — Wed, 02 May 2012 07:31:11 +0000

A good day…..

ianmarrey — Tue, 01 May 2012 21:58:31 +0000

Jude had no seizures at school today and only two all day – this is particularly good for the little man and coincides with a change in his meds recently. Tonight there has been an increase in the new drug (carbamazepine) so fingers crossed!

Back in the early days of this blog I posted a handful of photos of Jude yawning…not a lot has changed

Update on the March to Molineux

ianmarrey — Thu, 26 Apr 2012 16:02:18 +0000

Wolves have just sent me this picture with Jude before the Albion game…..

Jude’s New Room…..

ianmarrey — Tue, 24 Apr 2012 21:18:34 +0000

…..is coming.

Veteran bloggettes will remember a few years back that we looked at converting our old house in all sorts of directions to provide a suitable living environment for him. A wet room, a hoist, all his equipment and access all proved too much for our house so we had to move.

Rachel did good and we found a great place with a downstairs extension which looked perfect and we moved in August 2010. The council provide a grant for the adaptations, agree the plans and tender for builders – it sounds such an easy process…it isn’t! But, almost 2 years to the day we moved in work will commence on Jude’s New Room at the beginning of August. It’s a big job, upto 12 weeks work (and disruption) but it will be worth it.

Jude will get his own entrance to the house, a wet room, ceiling track and hoists and (very importantly) improved insulation in his room so we can scale back the heating bills a little bit.

In other news, Wolves have been relegated. That made Nathan sad.

Jude’s Progress

ianmarrey — Mon, 16 Apr 2012 23:12:45 +0000

The little man has been doing really well recently. We’ve got on top of his repeated chest infections with a combination of suction, inhalers and physio and with winter drawing to a close hopefully we’re past the riskiest stage.

At his review meeting last week he had Carbamazepine added to his medication regime and his Ketogenic diet was tweaked a little. He’s also been referred for Vagus Nerve Stimulation surgery which is an interesting development. I think we’ve both come to terms with the likelihood that we will never get completely on top of Jude’s seizures but the possible benefits of VNS are that they will be less in frequency and severity – that alone is probably enough to make it worth trying.

A Little Wolves Fan

rachelmarrey — Thu, 16 Feb 2012 22:23:42 +0000

An emotional day for everyone on Sunday. A truly amazing experience meeting do many kind people, walking to raise money for Acorns Children’s Hospice. Jude was able to go onto the pitch with Nathan and Ian with the match ball, and the staff from the Molineux let us walk through the tunnel to watch proceedings from the side lines.

Into the lion’s den…

ianmarrey — Fri, 10 Feb 2012 23:17:03 +0000

Sunday is the Black Country Derby – when one team from the Black Country (Wolverhampton Wanderers) meet local rivals from Birmingham (West Bromwich Albion). I don’t know why they call it the Black Country Derby when only one of the participants is actually in the Black Country. If the nuances of the Black Country v Birmingham debate are something you are unaware of the relevance of this first paragraph will escape you. But. The Black Country’s ours.

Today, to publicise the March to Molineux on Sunday – I headed into the lion’s den to meet the press at West Bromwich Albion’s training ground. Wearing my Wolves attire in such an environment is not normally recommended but we were warmly welcomes by Albion staff and players alike.

The lass in the middle is Emma, her father Kieren is the driving force behind Sunday’s sponsored March to Molineux and we have already exceeded the £5k target and are heading towards £10k. Emma was diagnosed witha tumour on the brain and after surgery and lengthy chemotherapy she seems to be on the road to recovery and is certainly full of energy when she gets going.

Over the last few years we have been priviledged to get to know either in person or through the internet many brave and corageous parents and their children. Emma and her family are added to that list. It continues to inspire me to see what people can do, achieve and survive.

Here’s Emma with Albion goalkeeper Ben Foster – giving him the high fives.