Been an incredibly busy few days!

So will do a website update later this evening (Monday 11th June 2007). Love Samantha, James, Samuel and LEWIS (!!!) xxxx

Stranded on a desert island?!

Stranded on a desert island? .... Seems that way when your internet decides not to work anymore and you have no idea why! Turns out our adsl router had (for some reason!?!) gone back to default settings and was therefore not working ... okay .... fine!

So here we are, back again! Different font trial not sure what to have for a change.

I think I like this one ... we'll see how we go.

So been slightly busy since our last, very miserable post. Got to stay positive though, and we have received emails and texts and comments on here helping us to stay positive and to get through this difficult time.

So what have we been up to since 1st June? Well ...

On Saturday Samuel came home from staying with Aunty Tania, Uncle Nathan, Daisy and Millie. We had a good chat with Nathan, while he re-charged his batteries ready for the drive home, and we were very happy to see Samuel. Lewis was so excited to have his brother back! Samuel had got a super cool present from Nanny Val of a wireless tablet which allows you to draw freehand on the computer screen, its very cool! When Nathan had left, we decided to go for a walk to Asda - the weather was beautiful on Saturday so we wanted to make the most of it by getting outside! But instead of going to Asda, we ended up having some beers at Jon's house while playing with Oli and Maisie, and then walked to to the Doncaster Racecourse Funfair with Jon, Oli and Maisie and Simon, Jane, Georgia and Isaac. We met Granny and Grandad there and we had a great time. Lewis had another go on a ride which he enjoyed very much - this one went up and down on its own so I didnt have to lean forward and press a stick to get us 'off the ground' !! Lew loved watching James zapping round on the bumper cars as well. Granny won Lewis a ball on the 'Hook a Duck' and Daddy won Lewis a huge octopus creature on the football game!

We finally managed to pop in to Asda on the way home and then it was straight to bed when we got in as it was past 7pm!

On Sunday we went to Tesco to get some ABIDEC (fish oils for Lew) and some curry sauce (for James) ... and we forgot BOTH!!!! We got some other stuff though (whoops!). Then in the afternoon we went to Denise and Jon's for a bbq which was lovely! Lots of scrumptious food, some more beer (a very beery weekend!) and some of Denise's absolutely unbeatable raspberry cake! It was almost a full turn out of neighbours which was great! The kids loved playing, and even when the sun went in and it got very very overcast and grey looking, we were still smiling and having fun and eating!

On Monday it was back to normal for everybody. Back to school for Samuel, back to work for James, and me and Lew were back to our normal 'filling the day with exciting stuff'!

At 9am Marie came round to give Lewis his bath. Then we went to Tiddlywinks nursery again as they were having an open day so Lew had a play with the children, enjoyed getting jelly in his hair (!) and did some sticking and made some paper chains. After nursery we came home to meet with the SENCO people to talk about Lewis going into nursery with a helper. Lew enjoyed making eyes at the ladies! Barbara (Homecare) arrived shortly after the SENCO ladies so Lew was surrounded and didnt know what direction to bat his eyelids in first! He was spoilt for choice! Barbara spent the afternoon playing games with Lew in the garden which he enjoyed thoroughly, while I tidied up a bit round the house (gosh it was a shock to my system!).

After putting Lew in bed, I had a quick power walk with Teresa and Vandanna and then met Marion at The Dome for our first Belly Dancing Class! Goodness me it was very very hard work, but I think I enjoyed it!

So that brings us to Tuesday. This morning we had group at DRI and Lew loved seeing all his friends again. He did lots of activities and tried a 'taste' of lemon mousse for lunch before we set off for Musical Minis. We had a long chat with Alison at MM - Alison is arranging the Fashion Show in November to raise money for The Lewis Jeynes Fund (see separate box for details). Alison's son, Samuel, is so gorgeous and cute, always laughing and smiling, but today I didnt recognise him as he has had all his hair cut off! Because he's so gorgeous, though, he totally gets away with it and he is even more scrumptious than before!!! His personality is a bit like Lewis - you just cant help but love him!

After such a busy day, Lew and I came home and watched Chucklevision on TV for a couple of hours before bed. We are going to see The Chuckle Brothers on Saturday at The Dome so we were enjoying 'catching up' with them before we go!

Tonight, Denise and I were meant to go pole dancing in town (its an exercise class!) but Denise has hurt her hip and I am just toooo tired - I think that should tell us something, ie. we are too old (well I am anyway!).

Hope you enjoy the photographs.

OH AND BY THEY WAY ...

Not sure if I mentioned before that on Thursday we went to the Bluebell Wood charity shop in town with Lesley and Tobey and popped upstairs for a cuppa with Lynda Lee and co who are busy running things behind the scenes while the Bluebell Wood Hospice building is being finished off. Please please do take your unwanted items to the Bluebell Wood charity shop in town. And dont forget to check out their website as they often have events to help raise money for this very worthy cause - www.bluebellwood.org

Oh and last Friday we started baby massage again too - Lew loved it so much and we made a new friend - Micki (mum) and her beautiful daughter River who is just a few weeks old! Micki does Reiki so we are hoping to get together so that she can have some time with Lew. And .. and ... while Samuel was down in Twickenham, he went kayaking with Uncle Jason, Uncle Lee and Daisy, and he had the best time!!! Unfortunately, he also had a bleed so had to inject himself, but did well on his own WELL DONE SAMUEL!

And last but absolutely not least, some big THANK YOUS.

POSTPALS - thank you for Lewis' wonderful soft, cuddly hug blanket/cuddly teddy thing! He loves it, we take it everywhere with us, and it gets lots of comments, its so soft and touchable!

GIFFORDS - thank you so much again for the proceeds from your tuck shop! We hope your teeth are not rotting from all the sweeties you are buying to help raise money for Lewis' fund!

SHELAGH WOOLISCROFT - dear Shelagh, thank you so much for thinking of us. I was so touched when James told me about your incredibly generous donation to Lewis' fund. Dont know what to say, but if you ever want to say HI to Lew, just let us know and we'll arrange a meet up!

.

.

.

Lew peacefully sleeping-->Lewis and mummy on the trampoline-->

PS I just ate a huge back of crisps while updating this website .... whoops!

PPS Have had a nightmare with my mobile phone this last week or two so if you have texted me and I havent replied, either I didnt get your text, or I replied and my phone didnt send it!

General anaesthetic

Fact is, I'm terrified. In the next 3-6 weeks Lew is going to have surgery again - biopsy, gastrostomy, fundoplication, significant blood tests - and he's going to have a general anaesthetic. The last general he had was in December. Before he went in for the anaesthetic, he could use his right hand. He was having trouble, but he could use it effectively. He had the anaesthetic, he woke up, and he couldnt use his right hand any more. That and his ability to support his head were pretty much the last things to go (oh and the swallowing which was also in December). So basically, there's not much else to be taken away - apart from the Lewis we know and adore. What if he wakes up and Lewis (that sparkly little boy) just isnt there anymore. So please forgive us if we're not making much effort these next few weeks. We've got alot on our minds.

Feeling poorly

What a gorgeous smile!We think its Granny's birthday today so HAPPY BIRTHDAY GRANNY!

Lew isnt well today. He's not been sleeping very well for a few nights now, with a cough, and this afternoon he's really not himself at all. His eyes are very red, he has terrible dark circles around his eyes, one of them is slightly bloodshot, and he's lethargic and dozey and very miserable.

Hopefully he'll improve with (fingers crossed) a good night's sleep, but we'll let you know if anything changes, or if we have to go in to DRI.

So on Friday we went to visit Jane, Joseph and George. We had a looooooooong lie in so we didnt get round there until just after 12 and so after a quick play, it was lunch time! Lew loved seeing Joseph and it was great to see Joseph loving his baby brother George so much and making him smile. Jane and I had a lovely natter, while Joseph showed me and Lew lots of his cool toys! Joseph is so very very bright. He is only just 3 years old and he has an enormous vocabulary, an incredibly mature understanding and he is also very very thoughtful and kind. Oh and he's scrumptious too! (Just like his scrumptious brother George!).

On Saturday we had to be up very very early to drive to Twickenham to take Samuel to stay with Aunty Tania, Uncle Nathan and cousins Daisy and Millie (and the cats .. and the fish .. and the frogs!). My alarm went off at 6.45am ... now Lew had been in bed with me since the early hours, upset and coughing alot, so I turned off my alarm and thought ... 'I'll just have 10 minutes' .... then at 7.30am Lewis woke me up! As we were meant to be leaving at 7.30am, we were now running rather late! Anyway, by just after 8am we were on our way. We had an uneventful journey although as we got on to the M25, Lew started to get very upset and it was very lucky the traffic there wasnt too bad so we were able to get to Twick quite quickly.

We arrived at Tania's in the miserable pouring rain (just for a change - when does summer start?!) and Samuel was straight off with Daisy on to the computer!! It was lovely for Lew to see his Aunty Tania and Uncle Nathan and also Nanny Val who was visiting there too. Cousin Millie was very shy but we sorted that out later!!

We chatted a bit, had a drink and watched Samuel and Daisy on the PS2 guitar game thing which was very funny to watch!

We gave Lew a bath and got him all clean and tidy and then we left Samuel to the PS2/msn/xbox/Daisy and drove round to see Aunty Nicola and Evie. Grandad was also there. We had a scrumptious lunch and a lovely chat. Lew loved seeing Evie again and enjoyed watching her playing with the trains (she LOVES Thomas the Tank Engine) we had brought for her. After lunch, James had a sleep (all that driving) and we all went for a walk round Twickenham (it had stopped raining but was still dreary!).

Evie did a picture for Lew which she rolled up and presented to him tied with a blue ribbon!

Soon it was time to set off back to Tania's to get ready to drive home to Doncaster. We had a delicious and unexpected tea of fish and chips and mushy peas (home made!) from Tania, I had a nice chat with Millie and took some cool photos of her, and we evem managed to get a photo of Millie and Lew in the same place at the same time (!she was very shy!) and then it was time for us to drive home. And surprise surprise IT WAS RAINING AGAIN!!

I fell asleep in the back of the car with Lew while James drove. When we got in, we were all so shattered and went straight to bed pretty much.

On Sunday, Lew and I had a LIE IN! We got up at ... wait for it .... 1.30pm!!!! Wow! Granny and Grandad came for a quick visit and then we decided to go for a walk despite the miserable rain, but got 5 minutes round the lake and turned back ... far too miserable and cold - almost like winter! We saw Van for a few minutes then came home.

Cant remember what we did for the rest of Sunday but since it was raining and miserable miserable miserable, nothing too exciting I'm sure!

Bank holidays eh? Just dont know what to do with them! And rainy ones too! Well on Monday I had arranged to take Lew to the fair at Doncaster Racecourse. Because of the dreary weather, nobody really fancied it, but we braved the cold and the threatening rain and we actually managed to walk their and back without it raining .. HOORAY!

Lewis and I, Teresa and Luke, Olya and Illya and Natasha, and Munmun and Livia all walked to the funfair just in time for it to open at 2pm. While we were there, we met Karen and Craig, Paul, Stephen, Daniel and Heather. We all had a really great time, even though alot of the rides were closed (too wet) and the fair seemed alot smaller than in previous years.

Luke and Illya had a go at 'Hook a Duck'.

Lewis and I had a turn on one of the rides which was kind of exciting! The ride we went on is about the biggest and scariest fairground ride you'll get me on!

I could not resist the smell of the doughnuts... yummm and I incredibly selfishly ate the whole bag MYSELF!

Natasha slept through most of the fairground trip. Olya and Ilya, and Teresa and Luke enjoyed the bumper cars (are are they called dodgems?), and the boys really enjoyed the fun house!

Livia got some scrumptious candy floss.We bought Denise some candy floss as we know its her faaaaaaaaaaavourite food ever!

We walked back to the Dome and went into the Icebreakers Bar where there is a cool play area for the children and they also serve sandwiches and other bar food. While we were there, I booked tickets for Lewis and I to see the Chuckle Brothers on 9th June at the Dome whohoooooo! We love them! I used to love them when Samuel was young, and now I watch them with Lew and he enjoys them too as he loves all the falling over and running round in circles and 'to me, to you' lol! (http://www.thechucklebrothersontour.co.uk/).

Finally we left the bar (sounds like we were all sozzled but it was coffee all round except me, I had a shandy lovely!) and walked back home again ... and invited ourselves to Teresa's for a cup of tea! We bumped into Denise and family who had just come back from a walk to the Yorkshire Outlet. Denise's mum was visiting with her fiance so it was lovely to see her although we didnt get a chance to chat as it was all busy busy people all over the place!

Munmun, Livia, James, Lew and I kidnapped Maisie and Oliver and took them to play for a bit at Teresa's (I think Teresa must have thought BL**DY CHEEK!!). At Easter, Luke had won an easter egg at school, and Richard was in the kitchen breaking it up into smaller pieces ... I only saw what was left, but it must have been 2ft tall, it was so huge and the chocolate was so thick! So we had some choc yummmm!

Luke and Maisie played on a computer game, then Lew and James had a go!

Then James had a chat with Denise about his sword while Lewis played on the game!Luke showed us his super cool helicopter that makes lots of sounds, lights up, and even shoots you! Lew loved it!

Then it was time to go home, get ready for bed and sleep. Unfortunately, Lew had another bad night last night and ended up in bed with me again. We had probably 2 hours sleep between us so were both zombie-fied when it came time to get up for our appointment at DRI at 8.30am!

Lew has to have splints for his legs to try and help his feet to not fall flat - as if he is pointing his toes all the time from the ankle. So today he had to be plastered (!) to make the moulds which will eventually become his splints! It was very interesting to watch and lucky that I hadnt given Lew a bath before we went to the hospital as he certainly needed one when we came out!

When we came out of the hospital, I took Lew home for his bath, then we went to Denise's for lunch QUICHE and RASPBERRY CAKE .... its like .... HEAVEN! Then as everybody was falling asleep (Maisie and Oliver, Lew, Denise and me!) we came home and zonked on the sofa in front of the TV! We dont do it very often, but when Lew is poorly, we havent got much choice.

Well fingers crossed for a better night for Lew, and we do hope you like the photographs.

And the clouds have gone, the sky is blue and I've got some washing out, wahey! How sad to get excited by washing! Lew helped me to put some in the washing machine which I think he enjoyed as he used to do that before he was ill.

Oh and I havent got the exact details yet but there is going to be another Gentlemen's Evening in Doncaster to raise money for The Lewis Jeynes Fund in November this year - if you are interested, please do let us know.

PS CONGRATULATIONS to Olya on passing her driving test FIRST TIME!!!

And a quick hello to all our Postpals, to Caroline and Declan and to scrumptious Nathan who has been very poorly over the weekend, but hopefully is feeling better now.