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Tuesday, June 05, 2007

Stranded on a desert island?!

Stranded on a desert island? .... Seems that way when your internet decides not to work anymore and you have no idea why! Turns out our adsl router had (for some reason!?!) gone back to default settings and was therefore not working ... okay .... fine!
So here we are, back again! Different font trial not sure what to have for a change.
I think I like this one ... we'll see how we go.
So been slightly busy since our last, very miserable post. Got to stay positive though, and we have received emails and texts and comments on here helping us to stay positive and to get through this difficult time.
So what have we been up to since 1st June? Well ...
On Saturday Samuel came home from staying with Aunty Tania, Uncle Nathan, Daisy and Millie. We had a good chat with Nathan, while he re-charged his batteries ready for the drive home, and we were very happy to see Samuel. Lewis was so excited to have his brother back! Samuel had got a super cool present from Nanny Val of a wireless tablet which allows you to draw freehand on the computer screen, its very cool! When Nathan had left, we decided to go for a walk to Asda - the weather was beautiful on Saturday so we wanted to make the most of it by getting outside! But instead of going to Asda, we ended up having some beers at Jon's house while playing with Oli and Maisie, and then walked to to the Doncaster Racecourse Funfair with Jon, Oli and Maisie and Simon, Jane, Georgia and Isaac. We met Granny and Grandad there and we had a great time. Lewis had another go on a ride which he enjoyed very much - this one went up and down on its own so I didnt have to lean forward and press a stick to get us 'off the ground' !! Lew loved watching James zapping round on the bumper cars as well. Granny won Lewis a ball on the 'Hook a Duck' and Daddy won Lewis a huge octopus creature on the football game!
We finally managed to pop in to Asda on the way home and then it was straight to bed when we got in as it was past 7pm!
On Sunday we went to Tesco to get some ABIDEC (fish oils for Lew) and some curry sauce (for James) ... and we forgot BOTH!!!! We got some other stuff though (whoops!). Then in the afternoon we went to Denise and Jon's for a bbq which was lovely! Lots of scrumptious food, some more beer (a very beery weekend!) and some of Denise's absolutely unbeatable raspberry cake! It was almost a full turn out of neighbours which was great! The kids loved playing, and even when the sun went in and it got very very overcast and grey looking, we were still smiling and having fun and eating!
On Monday it was back to normal for everybody. Back to school for Samuel, back to work for James, and me and Lew were back to our normal 'filling the day with exciting stuff'!
At 9am Marie came round to give Lewis his bath. Then we went to Tiddlywinks nursery again as they were having an open day so Lew had a play with the children, enjoyed getting jelly in his hair (!) and did some sticking and made some paper chains. After nursery we came home to meet with the SENCO people to talk about Lewis going into nursery with a helper. Lew enjoyed making eyes at the ladies! Barbara (Homecare) arrived shortly after the SENCO ladies so Lew was surrounded and didnt know what direction to bat his eyelids in first! He was spoilt for choice! Barbara spent the afternoon playing games with Lew in the garden which he enjoyed thoroughly, while I tidied up a bit round the house (gosh it was a shock to my system!).
After putting Lew in bed, I had a quick power walk with Teresa and Vandanna and then met Marion at The Dome for our first Belly Dancing Class! Goodness me it was very very hard work, but I think I enjoyed it!
So that brings us to Tuesday. This morning we had group at DRI and Lew loved seeing all his friends again. He did lots of activities and tried a 'taste' of lemon mousse for lunch before we set off for Musical Minis. We had a long chat with Alison at MM - Alison is arranging the Fashion Show in November to raise money for The Lewis Jeynes Fund (see separate box for details). Alison's son, Samuel, is so gorgeous and cute, always laughing and smiling, but today I didnt recognise him as he has had all his hair cut off! Because he's so gorgeous, though, he totally gets away with it and he is even more scrumptious than before!!! His personality is a bit like Lewis - you just cant help but love him!
After such a busy day, Lew and I came home and watched Chucklevision on TV for a couple of hours before bed. We are going to see The Chuckle Brothers on Saturday at The Dome so we were enjoying 'catching up' with them before we go!
Tonight, Denise and I were meant to go pole dancing in town (its an exercise class!) but Denise has hurt her hip and I am just toooo tired - I think that should tell us something, ie. we are too old (well I am anyway!).
Hope you enjoy the photographs.
OH AND BY THEY WAY ...
Not sure if I mentioned before that on Thursday we went to the Bluebell Wood charity shop in town with Lesley and Tobey and popped upstairs for a cuppa with Lynda Lee and co who are busy running things behind the scenes while the Bluebell Wood Hospice building is being finished off. Please please do take your unwanted items to the Bluebell Wood charity shop in town. And dont forget to check out their website as they often have events to help raise money for this very worthy cause - www.bluebellwood.org
Oh and last Friday we started baby massage again too - Lew loved it so much and we made a new friend - Micki (mum) and her beautiful daughter River who is just a few weeks old! Micki does Reiki so we are hoping to get together so that she can have some time with Lew. And .. and ... while Samuel was down in Twickenham, he went kayaking with Uncle Jason, Uncle Lee and Daisy, and he had the best time!!! Unfortunately, he also had a bleed so had to inject himself, but did well on his own WELL DONE SAMUEL!
And last but absolutely not least, some big THANK YOUS.
POSTPALS - thank you for Lewis' wonderful soft, cuddly hug blanket/cuddly teddy thing! He loves it, we take it everywhere with us, and it gets lots of comments, its so soft and touchable!
GIFFORDS - thank you so much again for the proceeds from your tuck shop! We hope your teeth are not rotting from all the sweeties you are buying to help raise money for Lewis' fund!
SHELAGH WOOLISCROFT - dear Shelagh, thank you so much for thinking of us. I was so touched when James told me about your incredibly generous donation to Lewis' fund. Dont know what to say, but if you ever want to say HI to Lew, just let us know and we'll arrange a meet up!
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Lew peacefully sleeping-->Lewis and mummy on the trampoline-->

PS I just ate a huge back of crisps while updating this website .... whoops!

PPS Have had a nightmare with my mobile phone this last week or two so if you have texted me and I havent replied, either I didnt get your text, or I replied and my phone didnt send it!

12 comments:

Anonymous said...

Sounds like life continues to be busy for you all! Hugs and love to Lew and also Samuel. Brave boys! When can we see you?!?! We are away next week but perhaps the following one? If it's easier I can come over your way. Will text you. Thinking of you LOTS. Love, Yolanda

Smnth & Co said...

Hey Yolanda!

I am so useless at texting at the moment! I forget everything! I walk into a room and I forgot why I am there. I walk out to the car and forget what I wanted from it! So unreliable, please forgive me everybody!

I will go and text you right now! Got a date in mind!

Love to all mwah mwah mwah

Samantha x

Anonymous said...

heya,
another busy entry from you all! Lovely pics to! lovin the text fonts - changing half way through, lol. Was funny.

Tell Samuel i said HI please
Take Care, Thinking of u all as always
Sian XxxX

Anonymous said...

Hello from Karen and Joe and William and Bethany and Elisha and Emily and the mice !

xxxx

cheryl said...

THE MICE!!!!!!

Anonymous said...

Hi Sam!
Haven`t heard from you for ages! Hope it`s the phone to blame!

As I always said you are a mum in million, and your boys are very happy kids. Always remember that and PLEASE don`t ever get depressed.

Take care
Olya

P.S. Definitely interested in fashion show xxx

Anonymous said...

fabby blog update n piccas!

hope your all ok and such like...

have a good remainder of the week & enjoy those chuckle brothers!

take care,

lawsey!

Smnth & Co said...

pmsl Cheryl!!!! I dont think I'll ever forget about your mice! It was so cool to see Holly (Hollie?)and Phoebe (sp?) and of course you lol! I ended up staying for lunch and tea with Karen and co, it was great! Poor Karen, I think she thought she had a lodger!

Olya - I only saw you Sunday and its Wednesday now! Did you get your yellow belt in TKD? See you Sunday at Nikhita's birthday party!

Hi Sian, hope you and Jamie are ok - our wall is looking bare - need some more lovely home made pics to put up in Lew's room!

Laura - we cant wait for the CBs!!! Sooooooooo excited. You know, they come from Rotherham which is just up the road from us!! Wiggles tomorrow though, in Manchester!

Cheryl and Brad said...

It is Holly and Phoebe or (Feebie) as brad spells it!!!

Good to see you too and Lewis looking really well and alert!

May see you on Saturday as thimking of taking Brad to see Chuckle brothers!

"To me. To you"!! lol!!

lawse said...

Wiggles ?

.....Is it 'wrong' that i work in childcare and don't know who the 'wiggles' is/are ?

Smnth & Co said...

Cheryl - it would be fantastic to see you Saturday. We are going to the 5pm showing and we are on the flat floor, middle at the back. Dont book online - there is a ridiculous booking charge - go into the Dome and pay by cash and there is NO booking charge!

Laura - because you are a GOOD childcarer, you dont stick the children in front of the TV! The Wiggles are a fab 4 from Australia who have been around for years and who are absolutely fab! We loved them! (PS thank you so much for the box of Somerset fudge - I HAVE EATEN THE WHOLE BOX!!!)

lawse who now kinda knows who the wiggles are!!!!!!! said...

Saw your update on the postpals site re

-

'We are seeing Lewis’ surgeon on Friday '

^

shall be thinking of you all 2morro...

take care,

and glad you and lew enjoyed the wiggles!! & that you liked the fudge!

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!