Smith-Lemli-Opitz Syndrome (SLOS)

I would like to help spread the word and raise awareness about Smith-Lemli-Opitz syndrome (SLOS).

The estimated incidence of SLOS is between 1 in 20,000 to 1 in 40,000 live births, but this may be higher.*

This syndrome is a genetic and is caused by the body being unable to produce cholesterol.

Babies born with Smith-Lemli-Opitz syndrome (SLOS) have issues linked to autism, feeding, vomiting and constipation.  Severely affected children have birth defects such as small heads, cleft palates, scoliosis, life threatening heart defects and learning disabilities to name just a few.

There are no effective treatments and no cure so much more research is needed.

Action Medical Research for Children are trying to fund more research into this syndrome.   They need our support to continue.

Alex, Daniel and their mum Victoria

Read Alex and Daniels Story here

 Watch the video here.

I would encourage you to share this blog as I am a true believer in the best way to spread the word of mouth.  

Lets raise awareness together and get sharing!

*Source  – www.cafamily.org.uk

2014 fitness update – Week 2

2014 fitness update – week 2

This is the 2014 fitness log – week 2

week beginning: 20/1/2014

Weight: 13st 5lb – no weight loss this week

Age:  39 years and 30 weeks

Activity this week:

Wednesday 22nd Jan – Session 4 – Warm up walk, followed by 3 minute jog, 3 minute walk x 4 reps = 24 minutes

No heckling from work colleagues as they left from work today, thank goodness.

Change of route down through Ladygrove along the yellow brick road. Under Cow Lane Bridge and back up Edinburgh drive, which has now been renamed Hamstring Hill.  

Jesus, this hill was HUGE.  

But I did it, not quite from the bottom of the hill but from about half way up. I didn’t stop and kept going all the way until my 3 minutes were up.  IT WAS HARD!

Crossed over The Broadway and  walked up to Wessex Road and then started on the last lap home which seemed quite easy compared to the hill section!

Though I did get lots of apologies from Julie and Suzanne aka good cop, bad cop.

BUT I did it and it was good.  Its amazing how you feel after you have finished. I still feel a bit of a whimp and that I should be able to do more but the plan ramps up the end of the week!!

Friday 24th Jan – Session 5 – Warm up walk, followed by 3 minute jog, 3 minute walk x 4 reps = 24 minutes

No Julie tonight just Suzanne and I.

After borrowing a loan jacket from Julie we headed out in the drizzle.  It wasn’t to bad it stopped shortly after we left.  We did the same route as Wednesday.

Down to the Ladygrove, across yellow brick road to Cow Lane.  Cross Station Road and UP HAMSTRING HILL!  I think we sped up the said hill faster than Wednesday.  

In my head I was just thinking get to the top and then its just a few steps more and that section would be done. I am sure that it would have been if we were working on distance and not time! Therefore reached further up the Broadway than we did on Wednesday.

Surprised at the image in my head as I hacked up that hill.  A large rope that came from the roundabout at the top and each swing of my arm was a pull up that rope until I reached the top.  I am quite good at visualising or I have a mental imagination!

No stopping us and another run down.

Now its time to ramp it up even more Holy cow.

Plan was to go out on my own on Sunday and do the next run on the Shand Plan which was 4 minute run and 2 minute walk for 4 reps.

Sunday was a FAIL. Hail,Snow and rain so run was abandoned.  Weirdly felt annoyed for not doing it.

Monday night was the night come hell or high water I was there.  It was blinking cold about 3 degrees when I left the house.  No rain, no hail and no wind.  Perfect!

Warm up walk was shortened as it was cold and I wanted to get going.  forgot to set my run-meter off! Set my timer on the iPhone and off I trotted.  Its very hard to pace myself I think this is what I am really struggling with but a Shand Mantra of ‘the slower you go the longer you can go’ kept bouncing round my head.

Timer sounded and realised run-meter wasn’t activated so swore for a bit and set it off whilst doing my 2 minute walk, 2nd rep was so much harder.  Was it harder due to the fact it was cold, it was upped from 3 to 4 minutes or I was by myself?  Possibly just because I wasn’t in the best mood and tired. However, I didn’t stop I kept on going and completed .  When I had completed this stage I suddenly felt more empowered and in control so reps 3 and 4 weren’t quite a breeze but they were more comfortable.

Ramping up again Wednesday so time for a rest.

 

 

 

Conversations with the boys! Just a taster of what is to come .

Legs is 8 and some of the conversations we have are quite bizarre here are just a few for your amusement.

L = Mum, do you know that when your dead your body still keeps moving?

Me = Legs are you sure who told you that?

L = Well mum (letting out a big sigh) its obvious, the world is always spinning round so when your dead the world doesn’t stop does it?

Note to self:  Have I told him that the world keeps going when something bad has happened?

 – x – x – x – x – x – x – x – x – x – x –

L = Mum, why do some mummies  give their babies to Nanny to look after?

Me = Nanny is a foster mummy which is sort of like a temporary mummy  or an auntie to look after babies or children  that can’t be looked after by their own mummies.

L = But why, do they not love them?

Me:  I am sure that they do love their babies very much but some mummies and daddies just can’t look after their babies or might need help to look after their babies and that is why they come to Nanny.  That’s why its important that we give them all our love and cuddles so that they don’t miss out on a minutes worth of love.

Note to Self:  Never really thought about the boys wondering why babies arrived at my mum’s house.   I wonder if the next question will be can we keep a baby?

– x – x – x – x – x – x – x – x – x – x –

L = Mum what happens to your skin when you get put in a coffin? Does all the fat melt away and all the skin just go all crispy?

Me = Erm, I don’t really know I suppose it would  go like a skin on a mummy like in Egypt. Lets google Egyptian mummies.

Note to Self:  Don’t try to google what happens to skin it is not an easy subject to read about, best off fluffing round the edges.

 
I know there are many many more maybe I should keep a diary of them.

My blog has become mobile!!

Just checking through the App Store and I found WordPress App.

Do you know what this means? A whole new world of blogging adventures from my phone as I am out and about.

Watch this space!

Cocktail Sticks – How many uses are there?

Cocktail Sticks

I am in awe of the person who invented cocktail sticks.  The uses for them are endless, aren’t they?

Cocktail Sticks

Cocktail Sticks

Food and drink:

  •  1970’s style Cheese and pineapple /onions hedgehogs
  • sausages on sticks
  • olives in martini’s
  • cherries in cocktails
  • Mozzarella and basil on sticks
  • holding together club sandwiches
  • holding together burgers
  • pinning  together stuffed meat or leaves
  • Making Sweet Trees

Party Games :

Other Uses:

  • To make holes in potting compost when planting seeds
  • use as a split for poorly plants
  • Resetting technology – tiny little holes in the back of calculators, routers and other electronic devices
  • holding things together whilst glue is setting
  • making a structure to build people etc out of icing
  • making trees or flowers for junk model gardens
  • cleaning out the dirty that gets caught in the back of rings -yuck!
  • toothpick

How many more can we find? Post yours in the comments section below.

Elaine

My Top Ten Treats for when your on the Weight Watchers Plan

These are my  top ten treats whilst I am on the Weight Watcher plan

  • Jaffa Cakes (1pt)
  • Party Ring (1pt)
  • Meringue nests , crushed up with low fat (Or no fat) Yoghurt and fruit (3pt)
  • Huge Flat mushrooms topped with chopped up courgette, red onions, garlic, few peas, balsamic vinegar and topped with a little bit of grated cheese. (3pt)
  • Low calorie Jelly
  • Glass of Cava (3pts)
  • Black Pepper Ryvita thins and Mini extra light Philly pot (1pt per slice and 1pt per mini tub)
  • Vodka and 7up Zero (1pt)
  • Sorry I ate the rest 🙂

 

 

Corporate Speak and Jargon

There are so many phrases  or abbreviations that are banded round at meetings or during the work day that really get my goat.  So just to get them off my chest I thought I would share them with you

  • DE
  • AE
  • AH – thats me!
  • QM
  • SuperQM
  • Smartsheets
  • Phased roll out
  • Blue sky thinking – bit dated but its there
  • COMPLIANCE, compliance, compliance – so many rules it makes you paranoid
  • CAR PARK – that one is just a bloody cop out.  I don’t know the answer, no one had even thought about it so we will car park it!  Car park is currently a bit like Meadowhall Shopping Centre in December!
  • Lets be honest and open
  • My door is always open
  • KPI’s
  • Stats
  • Budgets or Bodgets as I like to call them
  • Framework
  • Standardisation – strongly believe that no one actually knows what this is as nothing is ever the same or you can just adjust  them to fit – removing the whole idea of standard
  • Due diligence – this phrase just makes me laugh everytime

I think this blog is just going to be a rolling list that I will update as I see fit.  Though if you have any to add please share them with me.

2014 fitness update – week 1

This is the 2014 fitness log – week 1

Star Date: 19/1/2014

Weight: 13st 5lb

Age:  39 years and 29 weeks

Activity this week:

2 sessions of interval training to get me back out in my trainers.  Motivated along by my friends Julie Shand and Suzanne Fowler.

Wednesday 15th Jan – Session 1 – Warm up walk, followed by 2 minute jog, 3 minute walk x 4 reps = 20 minutes

Feeling a little bot apprehensive I rammed myself into my joggers and trainers.  Walked from Julies house up to the next road as a warm up then we started.  Would I being going to fast or even too slow to even get to the end of my first 2 minutes.

First rep was ok in that I mean it wasn’t too bad and definitely not as hard as it was when I tried to go alone. The  2nd rep was harder and the 3 rep completely lost my breath and took longer to get back breathing normally.  4th rep I was struggling and thought I wouldn’t make it BUT I DID! Whoop whoop. my running mantra just jumped back into my head…….. ‘Swimming, swimming, just keep swimming, what do we do we swim, swim’.  Just got to love a bit of Dory singing to get you through.

The following day I felt fine until about 4pm then I did feel some twinging in my thighs.  That evening I had spasms in my back enough to dream that I was going into labour in a pen of penguins.  Strange but true.

Friday 17th Jan – Session 1 – Warm up walk, followed by 2 minute jog, 3 minute walk x 4 reps = 20 minutes

Walked from work towards Julies house with Suzanne and met up with Julie.  Tonight’s Joglet as we like to refer to them was so much easier than Wednesdays I really felt like I was getting back into the swing of it.  We are still doing the 2 minute Jog/3 minute walk until Wednesday when it ups to 3 minute jog/3 minute walk.

After Friday’s joglet I did feel very light headed so I need to make sure that I eat something before I go out next time.

My plan was to go out this weekend or if not latest is Monday evening so far its 6pm Sunday evening and I haven’t been out yet.

Plan for park run at the end of February. I need a Park Run t-shirt that’s my next goal.

I think these are my results from Park Run in 2012

Elaine POWELL (2 parkruns)

Park runs 2012

Event  ↑ Run Date  ↓ Gender Pos  ↓ Overall Pos  ↓ Time  ↓ Age Grade  ↓
Abingdon parkrun 28/07/2012 39 102 41:58 36.06%
Abingdon parkrun 21/07/2012 37 87 43:29 34.80%

Event Summaries

So this is what I aim to beat!