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Sunday, April 29, 2007
off to London
well in about an hour we'll be on our way to London to stay overnight ready for our appointment at Great Ormond Street Hospital tomorrow.
This appointment has been a long time coming (we've been waiting since January!) and although we are all super nervous and apprehensive (and more than just a little bit stressed and scared) we also know that this is just the start for us.
The appointment tomorrow is a 2 hour assessment with Professor Robert Surtees. He will decide if Lewis needs to go back (we are assuming the answer to that will be YES!) and what tests Lewis will need doing. So this is the first visit of many to GOSH we are sure.
Please think of us at 2pm tomorrow when we start our 2 hour appointment. Lewis will be prodded and poked, but all in a good cause!
Who knows, this Professor may be so totally amazing that he takes one look at Lew, says feed him brussel sprouts 3 times a day and he'll be fine!!! Ho hum!
We will text those whose numbers we have after our appointment and we will be back in Doncaster on Tuesday.
Our very good friends are staying in the house to feed the cats, the grass and the plants (haha) so please do say hello if you spot them!
Thats it for a few days from us.
xxxx
Wednesday, April 25, 2007
Extremes
Thank you to all our postpals who have sent Lewis cards and letters - I am sorry I havent had chance to thank you all personally yet - but we will when we get ourselves sorted out!
It is quite amazing, the extremes of emotions one person can feel, and in such a short space of time.
We are exciting about going to London on on Sunday for our appointment with Professor Surtees on Monday at Great Ormond Street, but at the same time we are terrified. It is proving to be an incredibly difficult week with huge ups and downs. I am just thankful that our friends are such good friends that they understand the stress we are under and that if we are quiet or a bit miserable or distant, there is a very good reason why.
Again, its been a busy week so I'll just show you the photos!!
Maisie and Oliver enjoying chocolate ice cream!
Lewis having a lovely time with Mandy - he does LURV blondes!
Being wheeled round town today by Maisie!
I'd also like to send our love and hugs to Gill and Wayne and all of Gill's family, as Gill's dad very sadly passed away this morning. He had been ill for a little while and I know that Gill is comforted to know her dad is no longer suffering, but even so, its a very fragile and difficult time for them and we hope that fond memories will soon replace their sadness. We love you Gill and Wayne xxxx
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At the farm and in the garden with Maisie and Oliver
Very sorry to Lewis' loyal fans for the delay in updating the website - I hope to be more organised once we have GOSH behind us!
Samuel and Jodie by the lake
Mad Charlie cat!!!
Gorgeous Lew waking up with a smile which he does alot lately! He's such a happy young man!
A rather blurry photo of our good friend Olga
Lewis at West End Club with Jodie and Angela
Lewis feeding the goat creatures at Wentworth Farm!!
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Tuesday, April 17, 2007
Tractor Tom!
Hello again! Well its been busy since the last post! Its all go go go here!
Lew has been a bit under the weather but he's still managed to smile and enjoy himself alot and we've been doing lots of activities and seeing lots of friends! There are sooooo many pictures so I will cut out all the talking on this post and just let you enjoy the photos!
We went to Isaac's 2nd Birthday Party BBQ on Sunday afternoon and today (Tuesday) we went to Lesley's farm and fed the lambs and had a tractor ride!!! Tuesday afternoon we took Jane and Joseph to Musical Minis and then came home for a relax in the garden!
Enjoy!
And a quick thank you everyone at Gifford (http://www.gifford.uk.com/) for their very generous donation of £622.71 with which we have purchased Lewis a Jenx Monkey Stander! Lewis' uncle (Andrew Pettifer) has recently emigrated to Australia with Aunty Wendy and cousins George and Anna (you can read more about them on their blog (http://thepettifersdownunder.blogspot.com/). Gifford was Andrew's workplace here in the UK and the money raised was his leaving present money and he asked that it be donated to Lew's fund so thank you to Uncle Andrew as well and of course to Aunty Wendy, George and Anna.
Thank you also to all those who have donated to Lewis fund so far. We are waiting for Lewis downstairs room to be finished (it hasnt been started yet!) and then we will be able to use money from the Fund to purchase sensory equipment so watch out for more info on that in the next 6-8 weeks!
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I have mentioned before, but I MUST mention again (!!) my friend's website http://www.annmarieveitch.co.uk/. Annmarie is an awesome photographer with a VERY special talent AND .... if you look on her website you will find some photographs of US as well! So please take a look!
PS this is my pic of the lake, not Annmaries! If it was, it would be much better!!!
Saturday, April 14, 2007
Summer has arrived whohoooo!!
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- December 2006 (17)
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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.
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.
Useful links
- Post Pals - great site for helping poorly children smile
- Bluebell Wood Childrens Hospice
- The Mighty 'C' - my brother's amazing blog
- Kirsty A - a very special lady
- Nathan Bovell - scrumptious dude!
- Declan Kelly - gorgeous boy!
- Parents of Kids with Epilepsy
- My fantastic photographer friend
- Samara's video - please please watch
- Natalie Robinson - Lewis' LURV!
22nd October 2005
Lewis checking our supermarket receipt!
April 2006
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Colchester Zoo, just before Lew stopped walking
August 2006
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Lovely ice cream yummmm!
September 2006
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Ward 30 - just after Lews first major seizure
October 2006
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Doncaster childrens assessment unit - 'm on the phone!
October 2006
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In DRI childrens assessment unit blowing up rubber gloves!
30th November 2006
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Ward 31 - Blowing kisses to Daddy! Mwah!
30 November 2006
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Ward 31 - Playing cars!
1st December 2006
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Frankie & Benny's - just discovering cant eat very well
7th December 2006
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My arm doesnt work but my tongue still does!
7th December 2006
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Playing with Evie and mummy on the sofa
7th December 2006
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Lew in the bath with Evie providing entertainment!
7th December 2006
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At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!
December 2006
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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
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January 2007
Lewis and his cousin Evie
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February 2007
Lew and his cousin Anna
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February 2007
12th December 2006
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DRI Christmas Party - meeting Father Christmas!
30th December 2006
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Lew in Ward 31, not very well
5th January 2007
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Ward 31 - playing with my lovely balloons!