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Thursday, December 07, 2006

Thursday, rain, santa, more rain and a tornado haha!

Hello! So today ... well Lew had a bit of a lay in which was nice. I took advantage of Aunty Nicola and had a shower and washed my hair so looked half decent today! At around 10am, beautiful sunshine, blue skies ... gorgeous! So off we trot (me, Lew, Nicola and Evie) to Asda on the way to the HomeStart christmas party at the Salvation Army church behind the Dome. We feel some spits of rain but as there are no clouds and just blue skies, we assumed (doh) the water was coming off the lake!!! Anyway, we had a look round Asda, Nicola bought me the most scrumptious jumper dress cos I am soooo poor!!! And then we came out to walk to the church for the party. Well ... you can see the Salvation Army church from the road .. but it is not clear how to actually get there. So we walked down Booth Road (Lane, whatever) past the Dome and we walked all the way around the Dome and we walked over the little bridge and we came to a gate into the Dome car park and so we went through it ... by now it was SLINGING IT DOWN WITH RAIN!!! We walked round the Dome car park to where we thought the entrance to the Salvation Army church was .... hahaaaaaaaaaaaaaaaa a FENCE!!!! So we had to walk all the way back round the Dome, then round the little lake at the Dome along the tiniest little path, through the muddy grass in the wind and pouring rain .. and we finally made it to the church 25 minutes after setting off from Asda. Please bear in mind that from Asda you can see the Salvation Army church across the road!!! When we arrived I was in kind of a bad mood! The first comment we had was 'oh was that you two we could see over there walking around?' - if that woman had DARED to laugh I think I might have thrown in the lake!!! Second comment was 'oh has it just started raining?' ... JUST STARTED???? Whaaaaaaaaaaaaat? We walk in like drowned rats and its 'just started'? Not best pleased! Anyway, thinks improved immensely! The party was fab, we got a seat, the children were given plates to decorate with stickers and crayons and then a christmas card to decorate. Then we moved to an adjoining room for songs then we came back through and the main room had been transformed for us all to sit down and enjoy the food that had been laid on. Then we went back through to the adjoining room and Father Christmas arrived with presents for all the children! Lew and Evie were soooooooooooooo impressed that Father Christmas had presents for them! Lew got a super book which makes sounds and Evie got a gorgeous Hamleys teddy. The event was amazing, so much effort and preparation had gone into it, and the most amazing part is that it was all free - and HomeStart is all volunteers and they were fab! So thank you so much HomeStart, for everything! We delayed leaving until the rain had definitely moved on and we managed to get back home again without getting soaked although the wind was so cold and strong that we had face and neck and head ache when we did get indoors and we couldnt wait to just chill on the sofa! Lewis and Evie had gone to sleep on the walk back so we let them carry on sleeping. Jessica and her colleague arrived from occupational therapy to make sure Lew's bath lift was fitted properly. And then I went to Asda (again ... but in the car this time!) with me mother and bought two bottles of Asti (proper Martini stuff, only £4 a bottle bargain!) and mum bought some salad and stuff. We had an adventure as we used the 'self serve' till where you 'beep' your own shopping and then you have to insert your money into the slot and its soooooo cool! I want to get a job at Asda now on the till, I had a great time beeping!! Anyway, what about this tornado eh? When we had to get the train up to Royal Free Hospital (when I lived in London and had to take Samuel cos of his haemophilia) the train used to go through Kensal Green so I kind of feel connected somehow in some distant way because I went through a train station called Kensal Green and the tornado was at Kensal Rise and so ... well six degrees of separation and that lol! Lew had his second bath tonight in his bath lift seat thingy. I took some pics and will add them to the gallery on the right. We got Evie to come and play with him in the bath this time, so he enjoyed it alot more. Evie didnt get 'in' the bath, she stood at the side next to me and we both ended up soaked as she does enjoy playing with water!!!! It was great fun and of course it helped to remind Lew that having a bath is fun and so lets hope the trend continues tomorrow night and the night after and after and after and .... on and on! Lew is in bed now, after his pink milk and a story. His milk is pink not because I give him strawberry milkshake (!!) but because I put his medicine in it. He doesnt like to take his medicine anymore and we have to get it down somehow! So each morning he has his sodium valproate (the pink bit) and his multivitamins/fish oils stuff, and his lactulose stuff in a bottle of milk and then in the evening he has the same minus the vits and fish oils as he only needs that once a day. We have to give his chlobazam separately so that we can make sure he has the lot but we have to trick that in by squeezing the syringe into the side of his mouth while his bottle is in!!! Lets just say Lew is alot better at avoiding swallowing it than we are at sneaking it in his mouth! Well, going to have a bath and then go to bed soon (after put new photos on) as got to get up early tomorrow for our appointment with Dr Mordekar at Sheffield tomorrow morning. Our appointment is at 9.40am. We have NO IDEA what he will say to us. He may have some results for us, he may not. We'll have to wait and see, but one thing we must make clear to him is the severe decline in Lew's condition since we last saw him a month ago. So, fingers crossed, wish us luck, etc. Oh and I just HAVE to mention .... the old man with grey hair off Tikkabilla ... Catriona saw him today in Burger King (or KFC or Macdonalds) .... and he spoke to her! I was well excited to hear about Cat's brush with fame!! I hope you are too!

6 comments:

laura said...

Hey

Just wanted to say, i shall be thinking of you 2morro... goodluck.

And, glad the Xmas party was good :)

Laura

Smnth & Co said...

Aww thanks Laura, it means alot to me that you have remembered us!

I will update tomorrow (or at some point dependent on what is said) so dont forget to check back.

Samantha x

laura said...

the sites in my faves now so i'll be checking back.

Take care, thinnking of you all

Cat said...

Another brush of fame...my sister lives two streets from the tornado!

Cat
xx

laura said...

Seeing as we are discussing FAME..and brushes with fame..

who wants to meet lemar?! haha

he's my "Pal" lol x

Smnth & Co said...

Oooooooooooh lots of famous people!!!

So Laura how come you are pals with Lemar? I saw him on your website!!

And ... Catriona - phew thank goodness your sis doesnt live any closer or her house might have been in Kansas by now! Is her name dorothy?

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!