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Thursday, May 10, 2007

I LOVE WATER!!!

A very quick THANK YOU to Helen Brierley (a Postpal) - today Lewis and Samuel both received a package in the post - we love the juggling balls and Lew loves the collapsing donkey! I am sure we will blow up the balloons later! Thanks so much Helen xxxx
Lewis' favourite thing at the moment is spending time in the hydrotherapy pool with Kath. He absolutely LOVES it and especially as he has Marie and Janette to play with at the sides, floating balls towards him and being able to try really really hard to splash them! Usually, I go in the pool with Lew, but as yesterday was so quiet, I didnt go in (good job as I thought my swimming costume was in the wash so I only had a bikini to wear which was too frightening for all present!). Turns out my cossie wasnt in the wash after all, it had been washed and was clean and dry but too late now!!
As soon as Lewis realises he's going into the hydrotherapy pool, he's face lights up with excitement. And once he is in, he just loves it so much! He floats around on his back (with just the back of his head supported by Kath or me) and he tries so hard to splash his arms and his legs or to push or kick the huge beach ball!
Lew also loves having a bath and with a different lady every day to give him his bath, its no wonder really!!!
Yesterday afternoon we had a journalist who is doing an article for the Daily Mirror Health Section on Lewis. She spent a couple of hours with us, going through Lew's history, and a photographer is coming on Saturday for the photos. We'll let you know when we know the date it will be in, and hopefully with this national exposure, someone somewhere might know how to help our little Lew.
I also met a lady on an epilepsy community website who has a little boy (almost 3) with 95% the same symptoms as Lewis, except (I think) this little boy was born with the condition - undiagnosed just like Lewis - he has had all the same tests, he has the same abilities as Lew (can just move his head and smile) and like Lew he is ABSOLUTELY SCRUMPTIOUS! We are hoping to meet up soon as it will be great for both the children to meet someone 'like them'. And of course it will be great for James and I to meet his mum and dad as we have so much in common, with our both having gorgeous little men.
Samuel got some more birthday cards and presents in the post yesterday which I think eased the stress of it being his SATs this week! We also got a family gift from Wendy and Andrew, George and Anna - far far away in Australia - so that was a lovely surprise too.
Later in the afternoon, Denise and Oliver and Maisie were visiting and they made Lew laugh ALOT!
LEWIS WAS ON CALENDAR NEWS TONIGHT (THURSDAY) BUT AS HE WAS NOT IN THE HEADLINES AT THE BEGINNING OF THE PROGRAMME, WE DID NOT RECORD IT AND AS WE WERE BUSY DOING OTHER THINGS (GETTING WASHING IN, GETTING LEW READY FOR BED, MAKING TEA) THE FIRST WE KNEW THAT LEW HAD BEEN ON WAS WHEN WE GOT TEXTS SAYING 'WE JUST SAW LEW ON TV' ... so if anybody recorded the programme either on to DVD or VCR, please please can you give us a copy as we completely missed it and we are not happy. Thanks.

3 comments:

Anonymous said...

woah..so many updates its hard to keep up lol.

lovely photos,

enjoy the resta your week & hope you all have a good weekend
goodluck to samuel for any remainding SATS tests..although he needn't worry..there more to test the teachers teaching, than 'test' the children.

brill news re the national exposure re newspaper.

dublin sends its love LOL.
lawsey x

cheryl said...

fantastic photos of lewis in the pool. Have you thought about getting a pool installed in the garden!!!!

Will be taping calendar again tonite and hopefully he will be on tonite!

cheryl x

from leeds 8 said...

i saw lewis on calender news 2nite and remembered your e-mail just now, thought i'd check it out, sorry dont have a recorded copy of the calender news but must say it was very emotional somebody somwhere of some help will contact you, you must keep faith in that theres always hope, and thats what keeps us going, lewis is adorable, & your all very strong keep it up..p.s your website is brilliant it will definantly broaden your search for help, wish you all the best...

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!