Lewis Jeynes's Fan Box

Lewis Jeynes on Facebook

Saturday, June 23, 2007

Fun in the Sun

Goodness its been a long time since a proper entry! Sorry about that, been very very busy!!
So what have we been up to since Nikhita's birthday on 10th June?
Well ....... I feel like Granny Murray off Me Too!
Nothing too exciting. Feeding the ducks round the lake, going to group at the hospital, missed music group because we were tooooo tired and tooooo lazy! Went to see the genetic consultant at Rotherham hospital which was interesting. He couldnt tell us anything new, but they are going to take some bloods to test when Lew has his surgery on 16th July. The general outcome of the meeting was that the likelihood is Lew's condition is unique and new which means nobody knows what will happen!
We visited with Olya, Illya and Natasha and Lew loved watching Natasha being a flying fairy!
We visited Lizzie and Mavrick. Lizzie is the super dooper (duper? sp) beautician lady who did my make up for our wedding and we've been friends ever since. Lizzie has damaged her back and so is not feeling too well at the moment (including a trip in an ambulance to hospital and an overnight stay) so please send your happy get well thoughts to Lizzie cos she needs them!
On 12th June it was Todd and Toby's 3rd Birthday so we had a cake and candles at Hospital Group! HAPPY BIRTHDAY TODD AND TOBY!!
Some pics of Lew at hospital group: We spent alot of time with Denise, Oliver and Maisie - mostly eating yummy food (Denise is a fantastic cooks) and drinking coffee, putting the world to rights, that kind of thing. We also had lunch with Susannah and Reuben this week which was lovely!
I took Samuel and Lewis to the cinema to see Fantastic Four - Rise of the Silver Surfer - and it was definitely FANTASTIC!!! Vue cinemas, at the moment, have this offer on called Family 8 - you can buy 8 items from a particular menu (including drinks, hot dogs, nachos trays, muffins, chocolate bars) for £6.96 ... now bear in mind that a hot dog is £3ish and a tray of nachos is also £3ish ... you can get 4 of each for £6.96 under this offer! You can only have up to 4 of any one item but who needs more than 4?! So me and Samuel had a hot dog each, a tray of nachos each (I again made the mistake of getting the salsa and not the cheese - when will I learn?!), a drink each and a kit kat each. For £6.96 from a cinema is a BARGAIN! So grab the offer while it lasts!
On Friday evening I was very lucky to have my colours done by Jane of Evolve Image & Colour Consultancy (http://www.evolveimage.co.uk/) (thank you sooo much Jane for the superb freebie - I needed it!). It turns out I am a Winter which means certain colours suit me alot better than others and I finally can settle on a particular hair colour rather than ending up all shades of brown, blonde and ginger because I just havent known where I want to be! Its great, well worth the money (£50 for a colour analysis workshop), gives you some 'me time' and is a real boost as well, and definitely helps when shopping, particularly with all these bright colours around at the moment.
A random but gorgeous picture of Lew in bed!
On Saturday we had some lovely visitors - Karen, William, Elisha and Emily. Joe had stayed home, and Bethany had gone to a party I think. Lew loved seeing the children, we had some great laughs and will definitely do it again (but this time Karen will be brave enough to get a taxi so she can stay for dinner and have a drink!). In the evening, Steve and James prepared another Indian feast for Vandanna and I which was delicious!!!!
Sunday was Father's Day - we hope all you dads had a great day and were spoilt rotten just like we mums are on Mother's Day .. hahaaaaaaa! James joined Steve in the pub for a quiet pint - a family tradition for Steve so I think James will probably join him next year again and make it his tradition too!
On Monday we had a lovely day at Tiddlywinks nursery which is held in the Church Hall at St Francis of Assisi Anglican Church in West Bessacarr. Lew made a sunshine cake and also did some sticking as well as joining in the music game!
We then spent the whooooooole afternoon at Fundays Funcastle (St Sepulchre Gate) where we got a Bookstart pack for Lew and then Barbara (Homestart) spent a couple of hours with Lew in the ballpool enjoying interracting with the other children there while I put my feet up and read a book! We also met Denise, Oliver and Maisie and bumped into Wendy and her two children too. It was a great afternoon, but we were all very tired by the end of it!
Tuesday was Teresa's birthday - HAPPY BIRTHDAY TERESA! I wont tell you how old Teresa really is now, but I will tell you that her son Luke says she is in 9 years old so she's doing well!
On Wednesday we went into town as I had an appointment at the opticians. Lew went for a walk around the Frenchgate Centre with Jayne (Homecare) while I had my appointment.
On Thursday we got up late and went to the library for Storytime at 2pm. We met Karen and Craig, Heather, Daniel and Stephen there for a lovely story and some colouring activities then we had a quick wander round the town before heading home again.
Not much to do with all this RAIN!
Friday we went back to the opticians to order some glasses and that was pretty much it!
At school, Samuel made a celebration cake! It was brill and believe me, it tastes gorgeous!
We have spent alot of time walking round the lake feeding the birds this past couple of weeks - there are lots of babies this time of year (ducklings, cootlings (sp!), etc) and we have been prepared -ie. rain coats!!
Today (Saturday) we had a lovely morning at home relaxing and then went off to the 'Summer Fest' at The St Francis of Assisi Church in West Bessacarr where the Tiddlywinks nursery is. It was a fantastic afternoon - the rain tried to spoil it, but the sun broke through and warmed us all up! There was a bouncy castle, sumo wrestling suits, gladiator games, a balloon race, a DJ and activities, a gunge tank, a tombola and some bric a brac. Oh ... and some GORGEOUS home made cakes!
Lewis had a fantastic time watching all of the activities and towards the end of the afternoon when it had calmed down a bit, we had a quick go on the bouncy castle!! Lew was very happy to see his good friend Tobey, and it was lovely for me to catch up with Lesley while Kevin (her husband) joined the menfolk and Callum (Tobey's brother) played with Samuel. We got to meet the Vicar of the church and he was lovely so if you want to try out a new church either for a bit of a change, or as a newbie, you should give his church a try. We certainly are going to have a walk up there one Sunday as its a beautiful walk for us through the farm and the lush greenery of West Bessacarr.
Now, have you heard of Camelots? Its a night club in Doncaster. Do you know that every 3rd Saturday of the month they hold a special night called Loaded? (http://www.myspace.com/donnyloaded) Well this month's Loaded night was a charity event with profits being split between Oxfam (Darfur) and The Lewis Jeynes Fund. We are very very pleased to let you know that £170 was raised for Lewis' fund which is fantastic, thank you so much guys! We are sorry we couldnt make it on the night, but we will definitely try to get across another Saturday!
A quick THANK YOU!
Thank you Rachel for your cheque towards The Lewis Jeynes Fund. It was a lovely surprise and it will definitely go a very long way!
And now some REMINDERS:
An article about Lew should be in the Daily Mirror on 11th July
Lew is going into Sheffield Childrens Hospital (S1) on 16th July for his surgery (we will probably be in all week)
AND DONT FORGET:
Our Fashion Show in November -it may seem a long way off but there is a fantastic line up for the night, and we are hoping (fingers crossed) to present you all with a VERY SPECIAL celebrity guest so please do let us know if you would like to book your tickets as they will go very quickly! You may have spotted Catherine of SEEN (previously Homeboy) either on Mary Queen of Shops or on Richard and Judy this week. As well as Catherine's support with Lew's fashion show in November, Catherine is also a great supporter of The Bluebell Wood Childrens Hospice. This week her fundraising for Bluebell Wood involved offering customers the choice of having discount off their purchases or using that discount to buy a ticket for Jack's Lottery (the Bluebell Wood monthly prize draw). By purchasing a Jacks Lottery ticket, each month you could win £1,000!!! And you dont have to be in Doncaster to take part! You can download an application form from the website (http://www.jacksjackpot.co.uk/) or telephone 0870 050 5892 to sign up!
And dont forget the Gents Evenings in November too! I know the tickets for these two events will sell very quickly. As far as I know, already around 150 tickets have been sold for the Tuesday event so dont miss out! The event in May was a SELL OUT so get your ticket before its too late!
*******************************************************************************8
Now for the depressing bit. Not everybody who meets Lewis realises that he has only been poorly for a year. He used to be able to do all the stuff other children of his age could do.
Lew used to be able to drink from these cups:

Lew used to be able to eat with this fork and spoon:

Lew would sit in these chairs:

And bounce on this trampoline:

Now he cant do any of these things.

That is why we are fund raising to buy Lewis equipment that he can use and can get enjoyment out of, like bubble tubes and spaghetti fibre optic lights and a touch screen computer, etc.

A huge thank you to everybody who has helped us so far with our fund-raising.

Wednesday, June 20, 2007

Sorry for the delay!

I know alot of you like to keep track with Lewis' day to day goings on regularly, but this past couple of weeks I've been a bit slack with updates! I will do an update this week, probably Friday evening.

Friday, June 15, 2007

No photos, just a quick entry

Just had a major panic. Went to check on Lew and his plaster that holds his tube onto his face had come away and so his tube had become slightly dislodged. I dont know how long it had been like that, but thank God it had only become slightly dislodged. If I had not noticed, and if it had worked its way further out of Lewis' nose (which it does if its not stuck down), the milk that is pump-dripped into his stomach through his tube all night could have started dripping into his lungs. How long until I would have noticed? Would he have started coughing or choking? Or would it have just slowly drip drip dripped into his lungs until he drowned? This is why we have chosen for Lew to have the surgery to have a tube fitted directly into his stomach. Because every single night brings this same worry.
Ok I calmed down a bit and took a photo - after I put ANOTHER plaster on! These arent the 'proper' plasters we are meant to use, but the ones we are meant to use last 1-2 days before they peel off so we have resorted to 'real' plasters in desperation!

Monday, June 11, 2007

To me! To you!

So happy!
What a busy time we've had!
On Wednesday we had such a lie in! We were both sooooooooooo tired! Jayne actually woke us up at 10.30am otherwise I think we might have stayed in bed all day!!! So Jayne gave Lew a bath while I got showered and stuff, and then we went across to visit Karen and Joe.
When we arrived, Cheryl was there with Holly and Phoebe and Lew loved having a cuddle from the dogs! Karen made me a delicious lunch (she always does! I am so cheeky!) of piri piri chicken, rice and garlic nan bread, yummmmmm! Joe had sneaked some extra chillis in so it was extra hot and Karen and I had tongues and lips on fire!
Soon it was time for the children to come home from school, and Lew was soooooo excited to see them! He especially had eyes for Elisha and sat gazing at her for ages! He had lots of cuddles and kisses and loved watching the children bouncing around on the trampoline in the garden. Bethany had some special home work to do so we were all kicked out into the garden so she could concentrate! I had some lovely cuddles with the children, especially William and Bethany who were in my class when I was working at a school in Balby years ago! We arranged for Karen and co to come to us for a very special indian meal soon (super hot lots of chillis!) so we have that to look forward to!
As we were having such a great time with the children, we didnt get home until gone 8pm so it was straight to bed for a very tired, but very happy Lew!
On Thursday we had to get up EARLY EARLY EARLY because we were driving to Manchester! At 8am(ish) I was outside Denise's ready to load the car with car seats and children. Maisie was sooooooooooo cute! She was stood at the pavement all ready to go and sooooo excited! It was a loooooooooooong drive but with the Madagascar DVDs on in the back, the children were happy. On arrival in Manchester we found a great parking space and popped into Sainsbury's for some sweeties and a drink! The area was packed with young children all very excited to be seeing The Wiggles! Unfortunately, the seats we had booked were no good for Lewis in his wheelchair and it was not practical for us to leave his chair and to carry him/hold him on our laps, so Denise, Maisie and Oliver went to sit downstairs in the stalls, and Lew and I were escorted to the disabled seating in the circle.
We were allowed in early which was great! It was so exciting, such an atmosphere, and The Palace Theatre is beautiful! The show was amazing! Very entertaining and lots of fun! And one very special moment for us was when one of The Wiggles (Murray) came out into the audience and came over to say hello to Lewis! So we got a photo - but we werent allowed to use a flash so the photo was a bit rubbish! But you can just about make out Murray in the dark!
After the show, we met up again with Denise, Maisie and Oliver and headed off back home again to the quiet and sanity of Doncaster! The children (except Lew!) fell asleep in the car watching Disney Cars DVD - I am sure it wasnt the film that sent them off to sleep .... !
Denise popped into Asda on the way home to get some provisions for lunch and we had the most delicious pork, stuffing and apple sauce sarnies yummmmmm!
I cant remember much else about the afternoon except I was soooooooooooooooo tired!
So then it was Friday and HAPPY BIRTHDAY GEORGE PETTIFER! Our nephew had his 11th Birthday on Friday although it came alot sooner for him that it did us as he is in Australia!!!
Lew and I did the normal getting up and bathed and stuff then headed off for baby massage which was tummys this time. Lew enjoyed it as usual although he was a little bit restless. Then we went for lunch in a nice cafe (I ate, Lew didnt) and it was time to go off to Sheffield Childrens Hospital to meet with Dr Walker, Lewis' surgeon, to discuss his forthcoming op.
We have met Dr Walker before when she did Lew's skin and muscle biopsies late last year. She is really lovely and easy to talk to and she was very helpful and gave us lots of information about what will happen when Lew has his surgery. She explained about fundoplication (a band around the top of the stomach) and we agreed that at this time its not necessary so Lew is not having that done, which was quite a relief to James and I, I think.
We also got a date for Lew's operation - Monday 16th July - so we're on countdown for that now. Lew is expected to be in for at least 5 days, probably 7 days, which means I will be in too! We will of course welcome visitors, but not after 7pm please due to Lew's bed time! We think we'll be on Ward S1, but will let you know when we are sure. We will of course be very pleased to receive cards to put out by Lew's bed!
So, Friday evening, traffic between Sheffield and Doncaster - we had quite a long journey home, popped in to see POSH (!!) Roz and then it was straight to bed for Lew!!
Saturday - Lew got some awesome post! Helen B (postpal) sent him some Fly Eyes! They are soooooooooo cool, everybody loved them! Also, Samuel got a puzzle which he hasnt tried yet! Thank you soooo much Helen! xxxx
We didnt get up to much else except relaxing in the garden, until it was time to walk to The Dome for the Chuckle Brothers!! Paulash and Livia and James walked with us (they went to Asda and then to the Cheswold or some other pub where you can sit outside!) and me and Lew went in to get our seats for the show!
We had great seats and the show was AMAZING! The chuckle brothers are sooooooooooooo funny, appealing to children and adults alike, and I was howling with laughter! Lew got cream-pied (shaving foam stuff!)
The Chuckle Brothers are doing a pantomime at The Dome on 29th November so we MUST get tickets!
After the show, we were allowed to wait for autographs with Barry and Paul and they allowed children in wheelchairs to go through first. There was another young man who was waiting with us and he was definitely a Sheffield United Fan! We also met two lovely ladies who had been at the show who admired Lew's long eyelashes! Then we got to meet Barry and Paul and have a photo taken!!! Then it was off home (late night again!) and straight to bed for Lew!
WE LOVE YOU BARRY!!!
On Sunday we went to Nikhita's 8th Birthday Party! For some very strange reason I was convinced she was going to be 10! Doh! Anyway HAPPY BIRTHDAY NIKHITA for yesterday. We had a great time at Nikhita's party, complete with bouncy castle and magical musical candles on the cake! Lew loved spending time with all the children and Samuel had a very good time too! He even wore a pair of shorts and a t-shirt that wasnt black!
PS. I took almost 500 photos at Nikhita's birthday party so if you were there and you want to have a look at the pics and choose some you would like, let me know. There are too many to go on a single CD and I cant afford enough DVDs to give to everybody so please do come and have a look and we can pick off the ones you like best!

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!