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Wednesday, October 10, 2007

Very Special Children

If you havent already visited, and even if you have, please please take another look at www.postpals.co.uk. At this time of year alot of the children will be particularly poorly (like Lew is starting to be now) with the change in the weather and the cold/flu season beginning. One particular little boy on Postpals who really really needs as much love and affection as you can provide is Jack B. Jack's parents raised funds to take him to America for some ground-breaking treatment, unfortunately it has not worked out and Jack is now back at home. Please please visit his webpage on Postpals http://www.postpals.co.uk/pals/Jack+B. I can guarantee you will be touched by him and his story and hopefully you will want to send him a card or a letter or a gift at this time when he and his family need smiles the very most. Another special child is Nathan Bovell. Nathan had an appointment at GOSH today to check if he has any sight. Fantastically, they have now been able to show that Nathan has some sight (not much, but more than expected) which is absolutely fantastic news! You can read more about Nathan at www.caringbridge.org/visit/nathanbovell. The third special child is Declan Kelly. Declan has lissencephaly. He's not very well at the moment, horrid winter weather getting on his chest, and an increase in his seizures. He is such a gorgeous brave young man with a very courageous and positive family around him. You can read more about Declan at http://www.postpals.co.uk/pals/Declan+K. Here is a photograph of Declan having a 'duvet day' - he had to come home from school as he was quite poorly. So what has OUR special child been up to since the last update? Well ...
He has a fabulous new indoor chair!
With the weather being not very good, we have spent a couple of days indoors, watching TV (sooooooooo bad!) and doing activities like playing musical instruments, building brick towers (which Lew can knock down!) and reading lots of books. On Wednesday it was Denise's birthday and she brought us over some GORGEOUS cheesecake! We then all went over to Mun's house and Lew loved watching the children (Livia, Maisie and Oliver) play. On Friday we went to baby massage which was great! Lew loved having his arms and chest massaged and we are looking forward to going again this Friday for back massage. On Saturday James and I had a very busy day and Lewis got to watch Mummy and Daddy being industrious! James painted Lews new room blue (it looks so fab!) and I sorted out some rooms upstairs and filled James car with stuff for a car boot sale! It is so liberating, getting rid of stuff! Lews room (before it was painted blue!) On Sunday we had a very very lazy day as we were sooooooooo tired from all the hard work on Saturday! On Monday we went with Mun and Livia to visit Olya, Natasha and Illya in their new house. Lew loved seeing the children, especially when they were running around and around the furniture! He was trying very hard to keep up with them as they zoomed around! On Tuesday Lew had some physio with Janette and he was sooooo good! After Janette had gone, Lew enjoyed playing with Jo (from Bluebell Wood) until it was time for Jo to go home.Today (Wednesday) has been super busy! We were meant to go to Musical Minis this morning but 9.30am was just too early a start for us so we had a lie in! We met Karen, Craig and Heather in town for a coffee, and I bought Lew and Samuel their smart outfits for the Awards which are LESS THAN TWO WEEKS away! They both have smart trousers, a smart shirt and a tie to match, very cool! This afternoon, Lew had his first session at nursery with Lynda. I stayed around as they havent had their epilepsy training yet, but I was able to leave them to it most of the time and Lew had a great time being surrounded by blonde ladies!!! The children got to have half an hour in the sensory room at the nursery which was great! He also had a go in a foot spa with lots of bubbles and the other children enjoyed this special treat too! We were going to visit Debbie and Matthew (Matthew is 5 years old and is undiagnosed like Lewis) but Matthew is not well so we will have to go and visit them another day. We hope Matthew feels much better very soon.
A photo of Lew in front of some of his Postpals postcards, letters, cards and pictures.

1 comment:

Anonymous said...

SO good to read your update! Lew's room is amazing! We will have to come by some time and have a look :)

Joel has been down with the dreaded tummy bug (just like his sister had) a lot of this week. NOT fun. Getting better now, though. Been off nursery since Wednesday. His asthma has been pretty non existant and we see the consultant next week! Hoping he might stop some of his meds. We'll see! Well, you all take care and we are sending you lots of love as always! Yolanda

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!