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Monday, May 14, 2007

Rain rain go away, come back another day!

Where has all this rain come from? Has an iceberg melted in the sky? Has the ocean turned upside down somewhere? Cant be that - it would be raining fish too!
On Friday, Janette (Physio) came over to give Lew another fitting in his Monkey Stander! It helped that we put A Night at The Museum on the DVD for him to watch which Samuel got for his Birthday from Ian!!!!
So what else have we been up to this weekend? Well Saturday we went to Tesco to get some shopping. In Tesco we bumped in to Cheryl, Bradley and an INCREDIBLY grown up Natalia! The last time I saw Natalia, she was playing with My Little Pony!! Now she's a beautiful young woman! Scary how fast time passes when you are getting older!!! We were home for 2pm in time for the Daily Mirror photographer to come and take some pics of us for the newspaper article. We were very nervous about having our photos taken, but the photographer was great, he made us feel so relaxed, he was very professional, and you know ... we actually felt kind of normal!!! It was great! And the photographs are AWESOME!
Then it was BUSY BUSY BUSY in the kitchen for James and Steven for their delicious indian meal extravaganza! We were joined later by Teresa, Richard and Luke; Van (Steve's wife), Nicky and Jay; and Lynda, Craig and Callum. Samuel missed out, but he was very lucky to be taken for a meal, cinema (Spiderman 3!!) and bowling by Lesley and Kevin and their children and he had a great time! The meal was fantastic, as expected! Lots of wine and beer was drunk and absolutely piles of hot spicy food, yummmmmy! Lew slept through it all, even Nicky having a go on the karaoke, and the boys playing in the lounge with all the cushions on the floor not touching the floor! I remember that game from when we were kids! Sunday morning started out quite pleasant. I had planned to drive across and see Yolanda and Stephen, etc, at Bottesford Church (Scunthorpe) but as you will have seen from the last blog post, Joel was admitted to hospital on Saturday so they were unable to go. Lew and I didnt get out of bed until late anyway!!! We popped to Argos around midday to get an in-car DVD player as we are driving down to London soon (just for the day to drop off Samuel at my sister Tania's for half term) and we thought it would be nice for the children to watch a film on the long journey. Then it started to rain, just as we set off for Col and Jackie's bbq!!! Still, we are British after all and the rain wont stop us! So we had a great afternoon with all of James' footie mates and their wives/partners and children, despite the wet weather. Lots of lovely food and of course FOOTBALL on TV .. yawn! We stayed until around 6pm and then had to come home because of Lew's bedtime at 6.30pm, but Lew had a great time being made a fuss of, got some kisses from one of the girls, and Samuel made friends with Megan (one of Col and Jackie's children) who is 13 (again last time I saw her I think she was 7 or 8!!!). Samuel had a go on an xbox 360 (he was having withdrawals from not being on his own at home for an hour or two!) and we also got to watch Megan's punk pop group DVD (she sings in a band!) and AND she also plays for Doncaster Belles! But she was too shy to let me take her photo ... work that one out lol! Lewis' favourite kiss! We are trying to encourage Samuel to make very good use of the electric guitar he got for his Birthday for Aunty Lucy so he can maybe get a place in Megan's band which is called No Fears (www.nofears.co.uk) - check it out! Today, we went to DRI for my blood test appointment - while I did that, Marie took Lew to the Childrens Hospital to say hello, and also up to Ward 31 as we havent been for aaaaaaaaaaaages (fingers crossed dont want to tempt fate with that comment!). We also had a lovely long chat with Margot, Sue and .... I cant remember the last name ... Yvonne? who are volunteers at the hospital and they are our friends now - Lewis loves them! I bought a balloon and a card for Joel in the WRVS shop then we drove to Grimsby (via Karen's house to drop off a pregnancy test but I'll let Karen share the news about the results of that!). It was horrible rainy weather all the way to Grimsby, and in fact all the time we were there it was miserable miserable miserable weather! But Lew was soooooo excited to see Joel and Joel was sooooo excited to see Lew and especially to get a Noddy balloon as Noddy is his favourite! Joel is feeling much much much better so hopefully (please God) he can go home tomorrow and his poor mum can sleep in her own bed! We drove home again and close to home (on M18) the petrol thing beeped and the garage where we got the car had told me specifically that when it beeped, it meant you had around 50 miles left of fuel so as I was close to home, I carried on driving .... not long after, in the fast lane .... THE ENGINE PACKED IN!!!!!!!!!!!!!!!!! Thank goodness I was able to coast into the hard shoulder!! Me and Lew got out of the car and sat up on a grass verge - I tell you it is so scary being at the side of the motorway - you realise just how fast the vehicles go! Me and Lew sat on the grass verge by the side of the M18! The offending vehicle and a huge great lorry zapping by!! Very scary! Thank goodness the RAC were quick coming and were gentle with me (blonde moment, young child, etc) and it was all over in a flash (well about 30 minutes!) So we drove straight to Asda, filled up with petrol (wont make THAT mistake again!) and drove to the outlet for a de-stressing smoothie and some chocolate at the Thorntons Shop at the Yorkshire Outlet. Got home just after 6pm, Lew had a quick cuddle with Daddy, then it was time for his bed!!! One thing we have noticed about Lew - we are trying soooooooooo hard to enourage him to use his limbs which is very very difficult for him as he has no control over them, so if we are playing with him in the bath for example and we encourage him to 'hit' a ball or similar, and he tries sooo hard and his hand or arm moves just a little - we give him such a huge amount of praise, and his face is sooooo proud! In the car, if I have to break harder than normal, his head falls forward onto his chest and he cant lift it back up again, so I encourage him 'you can do it Lewis' etc, and I can see him smiling, and if his head does manage to fall back into his seat, I cheer and clap for him and he is sooooo happy and proud - its just great! Also, he loves to taste .... at the bbq I was eating a sausage in a bun and it had ketchup on. He was looking so longingly at my sausage, so I put a tiny bit of ketchup on my finger and I just rubbed it on his bottom lip, and as it soaked into his saliva and he got the taste, he was so happy! So we are going to try very hard to get him tastes of stuff to help him to feel involved and 'normal' if you like. Well, he's in bed now fast asleep! And the sun has come out, wahey! SO maybe MAYBE I can put some washing out????!
And finally ... Lewis got a surprise present in the post today from John Lewis ... it was a gorgeous fluffy cuddly bunny but it doesnt say who it is from ... so whoever you are .. THANK YOU SO MUCH!! Lew loved feeling the super soft fur of the bunny and it will join his 'bedtime' teddies xxxx ... HAHAAAAAAAAAAAA the mystery has been solved! Thank you to all our friends at Postpals for the luverly cuddly rabbit! And for any of you who havent heard of Postpals, please please please check out the website ... www.postpals.co.uk
Thank you also to Clare Sherbourn (sp?) at SOLACE who bought Lewis a really cool CD which has been personalised so that all the songs have his name in!! How fab is that?
Thank you also to Matty Sugars (is that really your name?!) for your donation to Lewis' fund of £10. It was very nice to meet you on Sunday at the indoor bbq and we hope you enjoy Lewis' fundraising tonight tomorrow (oh yes, some of the money is for Eden Grove too!).
Also (its like the Oscars!) thank you to one of Lewis' biggest fans Sandra Bailey for helping the website to reach ALMOST 10,000 hits now since it started in December!

6 comments:

cheryl said...

Beautiful photos of Lewis.Hope you werent waiting too long on the motorway!

Do you know when the article is being published in the paper?

Cheryl xx

Smnth & Co said...

Hello! We dont know when the article will be published, but they will let us know beforehand (they said ... better start getting it delivered just in case lol!) x

Lucy said...

Gorgeous GORGEOUS photos! You all look so lovely.

Good luck for the big event tomorrow, I hope it goes really well.

How is the sponsored slim going by the way?!

Lucy xxxx

Anonymous said...

Those pictures of lewis are really nice :) he is so handsome! im at school obviously and thought i would spend this time to look on yours and jaes blogs :) havent really got much to do at the moment... cant wait to see you and everyone at half term, did my mum mention that me and samuel and jae could go kayaking? im sure sam will love it :)

anyway, better go and do some work... :( love Daisy xxxxxxxxxxxxxxxxxxxxxxxx

Anonymous said...

ok, i know i only posted that last comment about 2 minutes ago, but...i really do have NOTHING to do.. so ill write some more :)
i think i have a stalker..but not the kind that follows me lol..shes called lauren and she WILL NOT leave me alone.. HELP! she took my jumper and said it smelt good..that seriously creeped me out :S and then charley started crying so ill have to sort her out..I think samuel fancies charley :S youll have to ask him lol by the way..charleys a girl if you were wondering..I have to do my art project all over again..the teacher said the faces were too small...dont really like that teacher that much..
All the chavs are havinga go at eachtoher..they are sooo annoying.. aa well.. I HOPE YOU ARE WELL :D i really should do something now..i might go and sort some folders out or something..have to research hampton court for the trip im going on :l Boredom Awaits!
Lots of Love..Daisy xxxxxxxxxxxxxx

(Ps) i wish i had the money to buy the sensory equipment that you need..but i have like..a pound.. :S but im still on the case to do that charity for lewis at my school.. :D xxxx

Smnth & Co said...

Completely bonkers .. who are you anyway? I am sure we dont know anyone called Daisy ..

hahaaaaaaaaaaaaaaaaaaaaaaaa just joking! Do some school work!

Love you, see you Saturday
xxxx

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!