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Tuesday, November 25, 2008

November

So November is almost over ... and its nearly time to put the Christmas decorations up!!! Just over 4 weeks until the big day! Lewis has been okay until just this last week when his seizures have increased hugely - Lewis normally has one or two seizures every few months, but with autumn and winter taking their toll and the additional bugs spreading around, he's had several a day for the past few days with temperature spikes, clamminess, increased twitching and lots of crying which, if you know Lew, is very unusual, so we know he's feeling rubbish, we just dont know how to make it better aside from lots of love and cuddles and calpol! So we're lucky enough to be able to spend a few nights in the Bluebell Wood Childrens Hospice which is where we are off to this afternoon. Lewis' friend from school, Matthew, is also going to the hospice this afternoon so we'll have some good company over the next few days along with Matthew's mum Debbie and Matthew's scrumptious baby brother Ethan! Lewis loves seeing Matthew and Ethan so it will help to cheer him up!
Thank you so much to Lewis' Postpals (http://www.postpals.co.uk/) for his super Horrid Henry blanket and also to Valerie and family for the postcards and the tiny bead fairy!
Yesterday I went to the Royal Mail to pick up a delivery for Lewis - WOW! Thank you to Katen and everybody at Love Quilts for putting together the fantastic patchwork quilt for Lewis! It is beautiful and Lewis and Samuel spent a long time looking at each of the squares and where they had come from - not only England, Scotland and Ireland but also Spain, Italy, Germany and USA! You can see on the photographs where each piece came from and if anyone is interested in contributing towards a quilt for poorly children like Lew, please do take a look at the Love Quilts website - http://www.lovequiltsuk.com/.

Sunday, November 09, 2008

Christmas is Coming - Reindeers and Elves wanted!

Post Pals brightens the lives of seriously ill children (most of whom are fighting cancer or going through transplants) and their siblings by featuring them on the website www.postpals.co.uk with their own page, with their story, interests and a forwarding address. Members of the public from around the world can log on and send cards, letters, emails and small gifts to brighten the child's day and let them know someone cares. Post Pals does this all year around but at Christmas they run some special schemes. Reindeers (volunteers) are assigned to a young child and during December they send a card from each of Santa's reindeer, talking about anything from loving it when carrots are left out or how full the sleigh is getting. Its great fun to use your imagination and the children really enjoy it, one boy was so relieved as it meant santa definitely knew he was in hospital at Christmas and another girl thought the reindeer wrote to her as she was good in helping her mum look after her disabled brother. The elf scheme is another project, a little like the Shoe Box appeal we all know. You're assigned a child and you have a read their page to get to know them. Then you gather up gifts to the value of £15 and send them off to the child in December. Post Pals needs to find 240 volunteers for this so please spread the word about how to make a difference this Christmas. A picture of little Aled with his elf box can be seen here http://tinyurl.com/64pq5b and a picture of Nikita with the bear she was sent can be seen here http://tinyurl.com/6mq9rj (sadly she passed away on Christmas Eve, a couple of weeks after this picture was taken). You can also send christmas cards or little gifts to any child, just log onto www.postpals.co.uk click on "News" to find out how to volunteer and see how a simple gesture can make a big difference.About Post Pals;www.postpals.co.uk - Post a Smile on a Sick Child's Face Winner of Queens Award for Voluntary Services 2008Supported by Princes Trust and Children in NeedPatron Fearne CottonPost Pals on the BBC http://news.bbc.co.uk/1/hi/england/southern_counties/3673782.stm

Thursday, November 06, 2008

No internet for 3 months! Back now!

In July we went to Hayling Island for a holiday. Here is Lewis with Katie, Aime and James! We have had a very busy time these past few months, but not many photographs and no internet! Thank you to everybody who sent us information or kind words after Lewis appeared in the Daily Mail. We have looked into the suggestions and discussed them with Lewis' medical team. Unfortunately we are still in the same position - we dont know what is causing Lewis' condition. But we will continue to search and hopefully one day soon we will have a miracle!
Here is Lewis with Katie, Aime and James again, with the toys they won at the arcade!
Lew enjoyed watching James playing in the arcade.We also went bowling as the weather was very poor! It rained all week!
Here is a very cute photo of Lew!
In August Lew was very poorly. He had suspected pneumonia and a strep infection. He spent a week in hospital and recovered well.
Now we have the internet back, I will take lots of photographs and update more regularly.
We are getting ready for Christmas ... only 7 weeks to go!!

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!