Fish & Chips at the seaside - Yum Yum

My Dad and Sylvia came down on Sunday for a few days - it was lovely to see them again.

We introduced them to the Wii and had them playing ten pin bowling, golf & baseball - they said they might buy one when they return home ! I was chatting to my friend Denys the other day and she said her parents have got one and when they get together with her children they can't get any of them off the Wii - and the grandparents are the worst !

Today the weather was dry and bright so we decided to wrap up warm and go to Cromer on the north Norfolk coast for a walk and a blow. Quite alot of other people had the same idea - so by the time we wanted some fish and chips for lunch the queue at the shop was very long !!

Christmas Day

Our Tree

Ben helping Sam open his presents

And the tradtional wearing of cracker hats !

Sam's never stays in one piece for more than 30 seconds !

Even Phoebe enjoys Christmas !

Ice Sculptures

Today was not the best day to be trailing through Norwich city centre on the 4th annual Ice Sculpture as it was very mild and the sculptures were rapidly melting in front of our eyes.

As usual Ben didn't feel this would be an exciting use of his time, so he stayed in bed (after all he is a teenager !) Had he come with us he could have visited his favourite stall on Norwich Market, where he spends most of his hard earned money !

This is the first time I have been on the trail and it was very interesting - here are some of the sculptures that we saw :-

The Friar

The City Dweller

The Dragon

The Church & State

And my favourite - Norwich Cathedral Spire

Sam's 12th Birthday

Molly & Layla's Christening

Molly is my neice ,Jason (my youngest brother) & Amy's daughter and Layla is Molly's cousin.


I went up to Glossop in Derbyshire on Friday on my own, as luckily Sam had a respite weekend, and as Norwich were playing Ipswich (our local derby) on the Sunday neither Ben or Julian wanted to miss the match. (The christening had been postponed by one week already because it clashed with the Manchester United/City derby !)

I stayed at my Dad's and we went out for an indian meal on the Saturday evening with my Dad and Sylvia, my middle brother Alex and his partner Helen, my Dad's best friend Michael and my mum.

Sunday morning we all met at the Methodist Church in Glossop and joined the Brownies and Guides for their toy service and Molly & Layla were christened. They both wore matching outfits and were really well behaved. Molly was waving at everybody.

Molly with her favourite rabbit blanket

Proud parents Jason & Amy

After the service we all went over to Hadfield for a buffet. It was lovely to see most of my family all together. My oldest brother Greg only made it to the church as he was feeling quite poorly (something had disagreed with him !)

In the evening I went over to Jason & Amy's new house where Molly & Layla opened all their lovely presents.

A GREAT DAY - topped off with a beautiful sunset over Hadfield.

Blu Tac Art

Ben's school friends Rosa, Lauren & Fiona popped round today after school and produced a piece of art work on Ben's bedroom wall just by his pillow !!

It Snowed Today

Some photos out of our front window :-

Ben Is Poorly

Ben very rarely has a day off school through illness. But this morning he woke up with a stinking cold. So he stay in bed for a while then got up and had a duvet day.


Being a sweet, kind mummy I made him a lovely hot bowl of porridge with strawberry jam.

Ben's 14th Birthday

It's Ben's birthday today - 14 years ago he was a 7lb baby, today he is a 5ft 6 long haired teenager - but we still love him !

Birthday tea was Ben's choice - Gammon, Chips & Fried Egg - Yum Yum

Sorry no photos of the day

Feeding Time In Our Back Garden !

Meet My Niece ......

A Deer Rut

Today we decided to go along to RSPB Minsmere which is near Dunwich in Suffolk - as the RSPB had set up a viewing area with telescopes so the public could watch the red deer rutting.

I was hoping to take some lovely photos of the red deer - but when we got there, if you squinted really hard you could just about see some brown objects in the hedges which apparently were the red deer !




Looking through the telescopes was much better, but unfortunately Sam didn't get to see anything, but he did enjoy watching all the people around and lots of them spoke to him.


We saw a few foxes running around, loads of rabbits and of course the deer.

This is what I was hoping to see close up - but I pinched this from a website about the Minsmere herd , which is one of the largest herds in England.

Girlguiding's Big Gig

Today 2 coaches and 74 guides, senior section & guiders from Taverham, Costessey & Horsford set off in party gear for the annual girlguiding concert "The Big Gig". This year it was at the NEC Birmingham.

Can you imagine 10,000 girls screaming in a hot, dark arena with the majority wearing blue flashing bunny ears ??? It is very LOUD !! But great FUN !! This is the 5th time I have been with the Guides to the Big Gig and I have never been disappointed.

We were entertained with The Sugarbabes, Leon Jackson, Sam Beeton, DJ Ironik, Alphabeat, Avenue, The Saturdays, The Script, The Hoosiers and finally Scouting for Girls.

Eggy Bread Wednesday

I feel ashamed to admit that this was my idea - the silver balls are cake decorations - there were left over from Guides last week and Ben has been eating them like sweets this week.

But combine them with eggy bread and tomato sauce and the result is 0/10 !!!

He said it was absolutely disgusting so scraped them all off. I wont be doing that again me thinks.

Goodbye Pear Tree

Take one 40 year old pear tree,

one 13 year old boy

and one hand saw (later followed by a chainsaw)

and the pear tree is no more.

Shame because we now have no where to hang the bird feeders.

Genetics Clinic

Today Sam had an appointment in the Genetics clinic at the Norfolk and Norwich hospital (N&N). The geneticists from Addenbrookes hospital regularly hold clinics at the N&N.

We have waited 3 years for this appointment, we were told at the last meeting in 2005 that new tests would be available in the next few years and we should wait.

So we have waited and waited.

I went along today hoping that we would finally be able to get a diagnosis for Sam. I don't know why I bothered going though.

As Sam hasn't lost any skills (can't say he's gained many either though !), and he doesn't have any dysmorphic features (both consultants had a good look at his fingers !) they really don't think they can do any more testing at the moment. But they did take a few photos of him and said they would discuss him at a team meeting.

Guess we are going to have to wait some more !!

Our Pear Tree Has Died !

I noticed the other week that our pear tree seemed to be leaning over - I originally thought it was straining under the weight of fruit on its branches - but no.

Yesterday I suggested to Julian that he could try and prop it up - but this morning we woke up to this :-

Which our cat Phoebe found much more accessible !

Pelizeaus Merzbacher Disease - PMD

Today Sam & I have been to Bedford to attend a PMD support group. (Ben & Julian have travelled to Barnsley to watch Norwich City try and play football !)

The PMD group meeting was organised by Peter - this is the second meeting, unfortunately we couldn't make the first one. It took us almost 2 hours to get there but we had a good time chatting to families whose children are affected by PMD.

Sam hasn't got PMD, but it was thought he may have it a few years ago - he does have a severe lack of myelin in his brain, but all the genetic testing for PMD has come back negative. So he has some sort of leucodystrophy, but we don't know which one yet !

Leucodystrophy is a genetic defect (a problem in the genes) affecting the myelin, the protective covering around the nerves in the brain and spinal cord. The myelin acts like the covering around electrical wires. It helps the nerves work and send messages from the brain to the body at great speeds. When the covering around the nerves is damaged, the brain and nerves are not able to send the signals to the body very well. There are 10 different chemicals that make up the myelin. And there are many different types of leucodystrophies. Each kind is related to how only one of the chemicals in the myelin works.

Eggy Bread Wednesday

Inspired by Ben's interest in music.

He is constantly plugged into his ipod or has music blasting out of his room

A simple design but it only earned me 5½/10

Snow Tubing

Tonight Sam has gone off to Squirrels for respite this weekend - hope he enjoys himself.

Julian and Ben were invited to the local ski-slope in Norwich to do Snow-Tubing. I went along armed with my camera, but due to the speed they came down the slope and the lighting my photos where dreadful ! So I only have a few.

It was a cold evening but I think everyone enjoyed themselves. I was hoping Julian would chicken out so I could have a go, but it didn't happen !

Farewell To Jenny

Sam and I went to Thorpe Marriott Guides tonight to say goodbye to one of their leaders, Jenny, who was leaving to do a course in Cambridge which will mean she can become a minister. We all wish her the best of luck.

The girls all played lots of old fashioned games like musical statues and pass the parcel. They had a great time.

Home from hospital

Julian stayed at the hospital Friday & Saturday night and I relieved him during the day.

Saturday morning Sam had the drain removed from his back. The plan was to put a bag over the wound so any more blood/urine could drain into it, but the nurse thought a plaster would suffice. A couple of minutes later she replaced the plaster with a pad - this soaked through rather quickly. I mentioned the bag again, she said she would contact the SHO - she came back and said it would dry up in a couple of hours (in his last 2 ops it has taken about 24 hours and he comes home with the bag attached !) I humoured her and left it - soon the bed was soaked with urine/blood, this happened twice before she agreed to stick the bag on.

We could have come home Saturday evening but Sam decided to start weeing large clots of blood which didn't please the Doctors or nurses !

We finally escaped by late morning today.

A Mad Dash to Brownies & Guides

It was the first night back to Brownies and Guides today after the summer holidays. As Sam was still in hospital I had arranged for his respite carer Lynn to sit with him from 4.30 - 8pm, and Julian from 8pm till I got back - I couldn't really cancel both meetings on the first week.

Brownies was as usual very loud - how can 15 - 18 young girls make so much noise ???

Guides was much better - we had a discussion about what they wanted to do this term - and it would appear they quite like dressing up and having parties - this seemed to be their most popular request ! So we have arranged one party at the end of October and another on the last week before Christmas. Other activities included scrap-booking, glass painting, ice skating, Wide games and Christmas crafts.

We finish Guides at 8.45pm, and as I hadn't had much sleep last night I was so ready to go to bed (albeit at the hospital !) How come when you have to leave promptly you always get one parent who is late and hasn't got their mobile phone switched on ? He finally arrived at 9.15pm !!!!

Eggy Bread Wednesday

This was awarded 4/10 - I think it is a cat, can't be sure as Julian designed it and drawing was never his forte ! I was in hospital with Sam so I take no responsibility for this mess original design.

Sam's Operation

Sam had to have another operation today to remove yet more kidney stones from his right kidney. I so hope this is the last time they have to do this.

We arrived at 7.15am as requested, but didn't actually get called down to theatre till about 1.30pm. We finally arrived back on the ward at 5ish - so a long day.

The consultant show me what they removed this time - he said it looked like a large mass of something that had started to calcify, so he was sending it off to be analysed.

Sam had quite an unsettled night, whinging but not crying loudly which is something to be thankful of when you are trying to sleep in a hospital bay !

Wheelchair Services

Shock Horror - we only had to wait 2 months for an appointment to have Sam's wheelchair reviewed - Amazing !!

It took 2 of them almost 2 hours to take the seat apart and move all the bits to make it bigger for him, and put it back together again.

He only got the chair in January, but has had a big growth spurt since. I was hoping this chair would see him through for a few years but it is now almost at the it's limit for growing. So glad we didn't contribute to the cost this time !

Sam has an Ottobock Discovery base with large rear wheels and a Gill III seating system.

They have now added a harness because if he was tired or unwell he would sit in his chair like this !!


I was told by the OT that issued the chair that he would learn to sit up straight in it - Yeah Right !

Blood Donors Today

I completed my 28th blood donation today. It started off smoothly - then decided to slow down, several of the blood team commented that I needed to squeeze my hand harder, so I SQUEEZED harder & faster. After what seemed like an eternity they had collected enough of the red stuff.

So they deflated the blood pressure cuff, removed the needle and gave me a cotton ball to put over the hole and apply pressure to for a few minutes. And then every time they came to remove the cotton ball and apply a plaster I continued to bleed - this went on for about 15 minutes !!

It stopped in the end - but that must have been the longest time I have ever spent donating blood.

Eggy Bread Wednesday Returns ...

After the summer break Scouts has started again so it's time again for Eggy Bread Wednesdays

So todays master piece was inspired by our recent holiday and Ben's favourite past-time - texting. He has been trying to educate me in the art of text speak, but I think I prefer just to spell out the words properly.

I scored 8/10 not bad !

Tomatoes & Razor Clams

As we have been away for a week - you can guess what the greenhouse was full of again .....

TOMATOES - ARGHHHHHHHHHHHH

Out came the roasting tins again, halve all the tomatoes, crush some garlic, mix it with olive oil, drizzle over the toms, and then roast for about 45 mins. This is delicious on toast for lunch, but any left over is pushed through a sieve and frozen in smallish quantities for use in pasta sauces etc etc.


After eating some toms on toast we loaded up the van and set off to Hunstanton as it was low tide and we were after some clams.

When we arrived the lifeboat was just going out, but we missed as it took a while to get Sam out of the van and Julian and his mate Jeremy donned their wellies.

All ready, we set off with our buckets and pots of salt and headed for the low water line.

Clams are burrowing mollusks which are found just above the low tide mark, and can be harvested by hand by pouring salt into their burrows. This causes them to pop up from the sand, as they confuse the salt with the rising tide.

They were quite alot of people on the beach digging for white ragworm - some come from miles away because apparently it is a much sought after bait for anglers. They use garden forks to dig the sand up and collect the worms.

After about an hour the wind suddenly whipped up, the skies darkened and the tide started to come in with great speed - it started to rain - Sam was not too impressed.

But we battled on and weathered out the storm and the blue sky reappeared. After collecting enough clams for 4 people we headed back to the car park. Sam was much happier on the way back.