Lewis Jeynes's Fan Box

Lewis Jeynes on Facebook

Sunday, December 17, 2006

Moving (purely in a spiritual sense)

Hello everybodies! Well what a very tiring and busy day! Lew had such a good sleep last night, not much twitching at all, perhaps the keppra is starting to work. Also, Lew is starting to verbalise again - he sounds like a new baby who is just finding its voice - gurgles and sounds as he tries out moving his mouth around. Its wonderful, it feels like he's 'starting over' if that makes sense. Well, we woke at 9.15am and so it was a mad panic to be ready to get to church on time! I got Lew and I dressed, left a note for Samuel who was still zonked in bed (!) and we managed to set off around 9.50am. I was incredibly impressed that I managed to find Bottesford Baptist Church again so quickly, its only our second visit!! And we arrived at around 10.15am, in plenty of time for the 10.30am start! Yolanda, Stephen, Naomi, Joshua and Joel arrived not long after and we went in for the service. It was so great, we sang christmas carols, had some lovely readings, and it is such a totally awesome atmosphere there, I was moved in many different ways. Being there gave me the strength to look inside myself which was scary; I felt so very uplifted and greatly moved by the love and affection and hope I felt in the room. The pastor is the probably the most wonderful man I have ever met, he is so happy and confident and hopeful and so full of joy and belief and faith and .. well he's just great. Thank goodness he's on the side of the goodies, thats all I can say! Lew loved the story of Harvey Slumfenburger's Christmas present, complete with actions, as did all the children, particularly Joel I am sure! We had a wonderful lunch with Yolanda and Stephen and children (and arrgghhhh cant remember his name .. David?) after the service - everybody had brought along some food and we had a wonderful buffet! Lew enjoyed making eyes and blowing kisses at the ladies, especially Yolanda!! Watch out Stephen! Now I have to do a special mention for a very special young lady who will be 10 years old on Monday ... (double figures - gosh her mom must be ANCIENT!!). Naomi will be 10 tomorrow so we hope you have the best day Naomi! And Joshua, have a great school christmas party! Synjj (stephen, yolanda, naomi, joshua, joel!) also gave us some lovely christmas gifts and a card (love the NTM calendar, thank you so much!) and also some cards from their friends and colleagues at New Tribes Mission in Grimsby. We were particularly touched by the card from Samuel which also had a letter in it to Lewis. I am hoping to write personal thank yous to each of them very soon, especially to Samuel who is 10 years old and who's parents must be INCREDIBLY proud of him! The drive home was very pleasant - multimap took us the pleasant residential route, rather than being stuck on motorway most of the journey - and I did quite well reversing my directions so that left was right and right was left ... hmmmm ! When we arrived home, James took Lewis to see the new football stadium (they had an open day) and I sorted out all my photographs on the laptop as there are so many that were junk and needed deleting or filing. So I've now managed to put together a CD for Dr Mordekar (Lew's neurologist) so that next time he 'presents' Lewis to his colleagues at a conference, he can have some photographic and video evidence to back it up! I think the shock of seeing the changes in Lewis in the past 8 months gives everybody who sees it a jolt. Let's hope someone out there has a miracle cure for our little boy! But in the meantime, thank you to all who have held Lewis in their prayers and for those who maybe dont pray, but still hold Lewis close to them and wish and hope for some good news for us all. So Leona won X-Factor ... that girl is going to be soooo huge, she is amazing and I am so glad she has won. And Strictly Come Dancing .. now I thought that was between Emma and Mark. I forgot about Matt! So Emma is out (cant believe it!!! as I thought she would win) but Mark surely will win as he is truly a natural!!! So how many days now until Christmas Day? 17th, but thats today so it doesnt count! 18th, 19th, 20th, 21st, 22nd, 23rd, 24th - 7 days!! Cos you dont count Christmas Day!!! 7 days ... sounds like The Ring haha! You know the problem with this blog thing is forgetting stuff. And if you forget stuff, its bound to upset someone, so I have to wrack my brains to think of anything I might have forgotten! And I have forgotten two very important things! This last week, Lewis has received 2 packages in the post! The first was from Aunty Tania, Uncle Nathan, Daisy and Millie and it was some christmas presents which have gone under the tree! The second was a huge package from Reuben and Louis. Reuben is a fellow postpal and he and his brother sent through for Lewis a huge box of brightly wrapped christmas presents for Lew to have on Christmas Day! The box was a gift in itself - it was covered in fabulous stickers which we have kept as Lew LURVS stickers! Inside were lots of pressies, one of which was losing its wrapping so Lewis opened this one - a gorgeous cuddly giraffe. As Lew's favourite film at present is Madagascar, we have named he giraffe Melman and he comes everywhere with us!! He did miss church today but he sat in the car! If you havent already, please do check out the link for postpals (see useful links below) and please do think about emailing a pal, sending a postcard or a letter, or a gift. It means so very much to the children on the site, and to their families, to know that someone somewhere who may not know your child personally thinks enough of them that they would spend some time writing or choosing a gift - I know because having received Lewis' gifts and letters from Reuben and Louis, well it was just so wonderful, and we hope to return the happiness very soon, especially as it is Reuben's birthday on Saturday! Tomorrow Lewis' nursery are having their annual nativity so I will be taking Lewis along to sing with his friends! I will hope to post some photos tomorrow evening! So to coin a phrase .... merry christmas to all and to all a good night (although I think I'm supposed to say that on Christmas Eve ... but ho hum whats a week between friends, eh?!)

1 comment:

laura said...

Yep - GO LEONA!!!!

And yep, post pals is a FABBY site x

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!