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Tuesday, October 02, 2007

12 weeks until Christmas!

****NB. FASHION SHOW, 9TH NOVEMBER - ONLY 25 TICKETS REMAINING**** What a hugely busy month September has been, and already it has gone!
Samuel went back to school and is enjoying it immensely, particularly because at upper school he is allowed to go out at lunchtime into town! Very independent and growing up fast!
Lewis is also growing up fast - he is so tall, but of course as we can never see him actually standing up, we just comment on how long he is! But he's in 5 year old trousers so he's definitely getting long legs!
James and I had our first wedding anniversary meal (a month late) at the hotel where we were married last August. It was a delicious meal, made even more enjoyable by the fact that it was free! So a great big thank you to the Danum Hotel (http://www.danumhotel.com/) for a lovely evening.
Lewis and I went to visit Rachel and Heidi and gorgeous George (the puppy) one rainy Friday and we had a lovely relaxing time! Lewis loved having stories read to him by Rachel (always nice to have a change of lap and voice!) and he enjoyed having George trying to give him kisses! He loved spending time with Heidi, and getting to watch some kids TV into the bargain!
Lewis and I went to an event run by the Doncaster Direct Payments Support Group, at the Salvation Army Lakeside Citadel. It was a very informative day and we got to meet some interesting people, and even bumped into Chanelle's mum and dad Amanda and Shane which was great! We gave them a lift home and got to say a quick hello to Chanelle and Chloe who had just arrived back from a walk with grandma. Chanelle is growing up so fast!
We had a visitor from the south as well in September. James work colleague and my friend Andrea who works for SOLACE Enterprises came to visit and we went out for a girlie meal to Central Park in town. It was lovely for Andrea to finally meet Lewis as she had only seen him when he was still in my HUGELY FAT tummy! Andrea has a little girl called Daisy who is just a few days younger than Lew and we are hoping to be able to get down to the seaside later this year to visit them.
We had a lovely afternoon with Lesley and Tobey and Lesley's husband Kevin made us a delicious vegetarian lasagne, yummm! Lew loved seeing Tobey and enjoyed watching him play!
A big day for us in September was our visit to Sandall Wood School, here in Doncaster. Sandall Wood is a school for children like Lewis who need a different kind of support at school. We have been avoiding going to have a look, almost as a kind of denial that Lewis needs to go to a school like this, but we gave in to our curiosity and took Lewis along. The school was awesome, and we could see very clearly that Lewis would flourish there with the right kind of care and support and equipment and expertise. So it was a very hard visit for James and I. The selfish parts of us want Lewis to be with us at home, but the sensible part says 'this is a fantastic opportunity for Lewis' so we have asked if Lewis could start in January 2008. He will only go for perhaps half a day to begin, gradually increasing to full time when he reaches 5 years old. Its normal school hours, 8.45 am to 3.30pm I think. Its nerve wracking and scary, but exciting at the same time. What if Lewis could show some kind of improvement in his communication abilities just by spending half a day a week at the school? Imagine the possibilities when he is 5 and starts full time. So we'll let you know about the progress on that.
In the meantime, Lewis has had a couple of taster sessions at a local nursery called Little Learners which is located within the Doncaster School & College for the Deaf. The nursery has an excellent reputation and is becoming very popular as more people hear about it. When Lewis starts there properly, he will have one to one support from Lynda, who Lewis knows from the playgroup he used to attend at the hospital, and he will go for two 3 hour sessions a week. We hope he can start in the next couple of weeks but until assessments have been done and the staff have been given some training on Lew's care, I have been taking him just for an hour or so once a week to get him used to the environment. He has already made lots of friends, particularly girls!
On Sunday we were very lucky to be invited to Samuel Firbank's christening. Here is the VERY FAMOUS Alison and the gorgeous Samuel too!We have not been to a christening before so it was a new experience for all of us! Here is a photograph of Samuel and Alison and the new and proud Godparents! It was a lovely, emotional ceremony, but it didnt phase Samuel at all who enjoyed exploring the church while the business side of things went on! We had a delicious meal afterwards and it was great to meet Alison's friends and family. Alison is the superwoman (!) who is arranging (single-handedly!) Lewis' fashion show in November!!
On Monday we finally got to meet up properly with Debbie and Matthew! We first met Debbie and Matthew at the Civic Theatre last January when we had gone to see The Wizard of Oz. Matthew was sat in front of us, and he had the same chair that we were waiting for Lewis to get (his current wheelchair) and I had taken Lew in his giraffe chair! So we got chatting, but then the show started and we didnt really get chance to talk properly or make any future plans. Well then it turned out that we had mutual friends and so through them we exchanged numbers and texted for a bit, but didnt get around to actually meeting up properly until just this week! It was great! We piled into the Thorntons Cafe at the Lakeside Village, Matthew in his (larger version) wheelchair and Lewis in his big wheelchair, and we chatted for ages! It was so great to talk to someone who knows exactly what you are on about and what experiences you are having in life! I hadnt realised that Matthew, like Lewis, was fine when he was born, but with Matthew, his condition became apparent around the age of 10 months. He is now a strapping 5 year old, scrumptious and cheeky and, like Lewis, completely normal in all his tests and undiagnosed. We are looking forward to seeing Debbie and Matthew again very soon.
Just today, we got to meet up with our friends from the hospital, the ladies who volunteer as helpers at the gate 4 main entrance. We used to see them every Monday when we went to group at the hospital, but as we dont go to that anymore, we havent seen them for ages, so we arranged to go to Stringers Garden Centre in Conisbrough for a cuppa and a chat. We had a lovely time, Lewis loved all the gossip and the laughter, and of course all the attention from the lovely ladies, and he was given a present of a Winnie the Pooh bath mitt which will get plenty of use!!
Later this month, we are going to London for the Wellchild and Best Magazine Childrens Health Awards 2007. As you will probably already know, Lewis was nominated for and won the Best Brave Child aged 2-3 years, so we are very excited about going to the Awards ceremony which is being held at Lords Cricket Ground. We are very lucky as Lewis' aunty Lucy has paid for us to stay in a hotel so that we can stay overnight and the day after the awards we are going to London Zoo with Nathan and Anna and Andy! So we will finally get to meet Nathan! Hooray! Oh and HAPPY BIRTHDAY NATHAN, 3 TODAY!!! Fancy mummy not reminding me!!!
Sadly, we wont be able to meet up with Declan on this trip as he is not well at all and so cant travel to London, but we will definitely be arranging a visit to Luton in the next month or two to visit Pylon Pants (his nickname from his mum Caroline!) to collect all the kisses he owes me! You can read more about Declan on Postpals (http://www.postpals.co.uk/pals/Declan+K) and on Declan's very own website (http://www.declan-kelly.com/).
Lew and I are going to start going to massage again on a Friday, hooray! We missed the last couple of blocks because of Lew being in hospital with his PEG surgery, but we have been invited along again so we are very exciting about that! Lew does love his massage, and he loves also to watch all the tiny babies who come along too! We have also been told about an art project which is on a Friday afternoon so we are hoping to get along to that as well. Its called DARTS and its at The Point in Doncaster, so if we can find it, we'll give it a try!
We have started going to Musical Minis again, and although Lew cant really join in, he does love to be with other children, and it can get very loud which he doesnt mind at all!
Later this month we are going to an open day at the Bluebell Wood Childrens Hospice. There are a number of open days which anyone can attend (although you do need to ring and book a slot). These are taking place Tuesday 30th October to Friday 2nd November and then Monday 5th November to Friday 9th November, with slots at 10am, 11am, 2pm and 3pm. Late slots are available at 6pm and 7pm on 31st October, 2nd November, 6th November and 8th November. If you would like to book a slot to go and take a look round the new building, please contact opendays@bluebellwood.org or 0845 108 1579.
If you are interested in helping to raise money for Bluebell Wood while dressed as Santa or Rudolph or some other Christmassy character, there is a 3 mile Fun Run taking place on Sunday 9th December around Lakeside, contact Greg on 0845 108 1579 or greg.oldfield@bluebellwood.org for more details or to register your interest.
THANK YOU to Postpal Helen for Lew's Smile Certificate and his Gold Medallion! Awesome, you are sooooo talented and Lew loved them!
Lewis' new bedroom - what used to be our garage (and full of junk!) is now a fabulous new bedroom for Lewis! The building work is pretty much complete, just got to have the floor put down and then its a case of putting in the necessary equipment (bed, bath, hoist) and decorating, putting curtains up, and Lew can move in! Cool!
Finally, Lewis' Fashion Show. Tickets are still available, but are going very fast! Its only 5 weeks away, and an absolute bargain at £5.00 for a fabulous fashion show, live band, Celine Dion tribute act and a dance presentation as well as the opportunity to bid for fantastic auction items, and to purchase raffle tickets for some amazing raffle prizes. 9th November, 7.30pm at the Holiday Inn Warmsworth (previously Moathouse).
And for any football fans, dont forget the Gentlemens Evening on Tuesday 13th November at the Keepmoat Stadium (the new home of Doncaster Rovers), 3 course meal, guest speaker (some footballer bloke!), comedian and sports memorabilia auction.
PS. Did anybody watch The Worlds Greatest Elvis on BBC1? The man who won it, Shawn Klush, was AMAZING!!! If you didnt catch it, check him out here http://www.shawnklush.net/

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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.

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!