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 !