On the Campaign Trail

Jude in the news highlighting the March to Molineux

 

The March to Molineux

Wolverhampton Wanderers and West Bromwich Albion – two football clubs seperated by 10 miles of tarmac and generations of rivalry.

On 12th February these two teams meet for a lunch time local derby and fans from both clubs will be walking from West Bromwich to Wolverhampton before the game to raise money for Acorns Childrens Hospice.

This was an idea put forward by an Albion fan whose daughter uses the respite facilities at Acorns – as does Jude so I didn’t think twice about volunteering. And then I worked out that I had to walk 10 miles in 4 hours and perhaps I should have volunteered Rachel instead.

Donations to the cause can be made here….

See what Acorns does by clicking their logo.

 

Sigh 2012

I guess it was only a matter of time, Jude is back in hospital. I didn’t think I’d be back at the blog again so early this year.

We’ve been managing his chest for a while now, using a combination of nebulisers, suction and occasional antibiotics we’ve kept Jude relatively well but never quite fully well.

A week or so ago we had some tests done on Jude and it turns out he has Pseudomonas some nasty bugs that are resistant to many antibiotics. Last night he was not too well and this morning he exploded at the other end in a way that words could not to justice. He was listless and pale so Rachel arranged to get him to the Children’s Hospital where he has been admitted. They are rehydrating him and have started him on a more aggressive antibiotic to hopefully kick the Pseudomonas into touch.

Jude January 2012

About Time Too!

Ok, May was our last blog post! Sorry everyone. So many things have happened since then Jude finished his first term at school and is progressing well. He’s now up to 1 hour in his prone stander, such a clever boy. We’ve had a holiday in Ireland in June which we all enjoyed, Jude loving the sea breeze. We then went to a cottage in Herefordshire in August and had lovely weather. Jude’s elder brother – Joe has started secondary school and Jude has started his second term at Pens Meadow School.

His seizures took a turn for the worse, we are trialling a cycle between clobozam and clonozepam and things didn’t seem to be working that well. Jude then came down with a nasty chest infection a few weeks ago. All good though now.

His eldest brother – Nathan is in The Royal Orthopaedic Hospital at the moment having his femur cut and plated, so Jude is on ‘holiday heaven’ at Acorns Children’s hospice until tomorrow. He is having such a great time and they have his bedtime routine totally sussed after three days. I tell you when we are going home I am implementing everything they do.

Ooh Jude had a birthday too Have tries to upload photos but something’s not right so will add later.

Come on You Wolves

A good day in the Marrey household yesterday, Jude is doing real well at the moment and is very happy. School ate very pleased with his progress saying how well he is doing and how much hrs developed since he’s doing full time at school. I think the picture below is fab

Dare I Say It ……

We are home, at last. Jude came out of hospital yesterday after I managed to reverse into a car on the car park!!!! So tired, and yes so blonde.

The Marrey 5 are sleeping under one roof tonight, thank goodness. And only one more day of double dose co-imoxiclav for Jude, so hopefully only one more day of tummy aches for him.

Happy days are here again … long may they continue.

Hospital … AGAIN

Ok it’s getting beyond a joke now. We came out of the Royal Orthopaedic with Nathan on Monday afternoon and on Friday night 7.30pm were back in another hospital -Birmingham Children’s A&E with Jude, so
Not funny! He has a nasty chest infection and has needed oxygen since Friday lunch time.

I left and 1.40am to relieve Ian’s mom as she was looking after the older two and Jude was allocated a bed at 5.20 AM !!!! It’s an eye opener A&E on a Friday night in Birmingham

Big Bro

I know that this is Jude’s blog but it’s been a pretty big week for Nathan this week … Jude meanwhile has been in respite (or as we call it ‘holiday heaven’) at Acorns Children’s Hospice.

Yesterday we had much pain and a few tears but Nathan managed to walk with his frame to the bathroom and back ( which is quite a distance ) and then to the teenagers room to play a bit of x box. I am SO very very proud of him for doing SO well.

I love proud mom(my) moments like this

My Boy

Well Nathan underwent surgery yesterday to correct a femoral retroversion. He’s being very brave and now the pain block is wearing off is in quite a lot of pain. But that said is being brave and coping very well.

I’ve come to see Jude who is booked in for a five day respite with ‘Acorns Children’s Hospice’ a truly amazing place. We are currently in the sensory room – a very very relaxing room

His hair was a bit long…

…and he looks so grown up and good looking like his dad with it short.

Jude has bounced back from his operation and will be back at school tomorrow – which means he can start reducing his daily TV intake. Because we’ve never been sure what Jude can see and because he’s never shown much interest in it Jude has never been exposed to children’s TV but in recent weeks it has become more and more apparent that he is transfixed by something – the sound definitely but I just feel that he’s seeing something in those magical moving pictures that is stimulating him.

Another thing he’s mastering is the art of side lying. This has always been a comfortable position for Jude and in the dark, dark days I would often lie him on his side and we’d both lie in a fetal position trying to comfort him. Now, he seems to be liften himself up and flipping himself over – of course he hasn’t mastered flipping himself back which can irritate him a little.

The council have finished off the plans for Jude’s room and extension and they will be in to start building either in July this year or sometime in 2012. It’s a bit grrr and a bit raaah and I bite my tongue and say nothing – it’s great that the government will pay for these adaptations but do they have to be sooooo slow.

Onwards and upwards, or any direction…not that fussed as long as it isn’t backwards.