Sorry it's been so long!

Hello everybody and sorry it's been so long since I last updated Lewis' website! It's been a very busy 6 weeks school holidays! Lewis went to Blackpool with Daddy and Granny and Grandad and his cousins Katy and Emily. He's enjoyed spending lots of time outdoors and has been growing well too ... very tall young man and very heavy for us to lift!

Lewis is back at school now and loving seeing all his school friends again!

Hello everybody and sorry it's been so long since I last updated Lewis' website! It's been a very busy 6 weeks school holidays! Lewis went to Blackpool with Daddy and Granny and Grandad and his cousins Katy and Emily. He's enjoyed spending lots of time outdoors and has been growing well too ... very tall young man and very heavy for us to lift!

Lewis is back at school now and loving seeing all his school friends again!

UPDATE

Lewis' dad has spoken to the doctors. Lewis definitely does have chronic Lyme Disease. He should be started immediately on a course of IV antibiotics (this could be 2-3 years treatment) which will involve a drip for around 2 hours a day so he will have to have a port-a-cath fitted. As he starts to improve (we hope!) he will need rehabilitative physiotherapy. Its all VERY exciting!

'Tis the season to be jolly!

PLEASE TAKE A LOOK AT OUR GUEST BOOK! LEWIS AND MATTHEW GOT A MESSAGE FROM FATHER CHRISTMAS!!!! Lots and lots of Christmas stuff going on at this time of year! Its great! We are soooo busy!

But please do remember the children who will be in hospital or very poorly at home or in hospices at this time of year.

Lewis' buddy Nathan has a chest infection and is feeling a bit rough (http://www.caringbridge.org/visit/nathanbovell).

Lewis' other buddy Declan is still in the hospice, but his mum and dad and big brother are hoping they can have Declan home in time for Father Christmas on Christmas Eve (http://www.declan-kelly.com/).

There are so many children you can help and support this Christmas at http://www.postpals.co.uk/.

And of course not forgetting Lewis who yesterday afternoon was rushed to hospital in an ambulance as he had a massive tonic clonic seizure (3rd in his entire life) which frightened both James and I immensely. We got him home again late yesterday evening, but the medication he had been given made him very zombie-like which was scary in its own way. He's back to himself this morning, so fingers crossed no more horrid seizures this year please!

Thank you to all the postpals Lewis and Samuel have received cards and gifts and letters from so far this month. Thank you to Despina for your card, thank you to Kate Dee for your card, thank you Laura H for the card, than you to Sian and Jamie for the huge Christmas parcel and letters and card, thank you to Julie and Alan Barratt for the cards and the Christmas parcel. Thank you very much to Postpals for Lewis' Christmas gift (the singing and flashing Christmas tree!). All the wrapped gifts have gone under our Christmas tree until the big day! We are not sending Christmas cards this year, so please dont feel offended that you havent received one from us if we normally send one.

Lewis has been able to go back to nursery this month which he has really enjoyed! He also went to a Christmas party with Homestart (http://www.home-start.org.uk/) and met Father Christmas a little bit early! Lew had his face painted too! He enjoyed meeting his friends Daniel and Heather too who were dressed in their Christmas outfits!

We went to visit Lew's school which he will start in January. We are very very excited about this, although of course very nervous too!

We had a great day on Saturday, we went to Fundays for a party, and then Tobey and Callum came back to our house and we played on our Wii!

As always, we hope you enjoy the photographs!

Just some photos

It's December, our Christmas tree is up, and we're getting very excited!

Please do consider not sending christmas cards this year, but using the money instead to donate to charity - there are so many worthwhile charities in the world and your donations will last a lot longer than christmas cards do!

We had a visit yesterday from an old friend - Jodie (Miss Jodie from when Lewis' was at nursery) - and Lewis was so happy to see her! Jodie noticed how much Lewis had grown as well! We hope to see alot more of Jodie in the next few weeks before she goes back to college in January.

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PLEASE PLEASE PLEASE

leave your comments on Declan Kelly's website

www.declan-kelly.com

Declan isnt a well boy at the moment, he is being cared for in the hospice, and I know his family would be very grateful to receive your kind comments. You can also send cards and gifts to Declan and his family via Postpals - www.postpals.co.uk/Pals/Declan+K

Bravery

Almost everybody we meet comments on Lewis' gorgeous gorgeous long eyelashes! They say 'ooh we would pay good money for eyelashes like that!' ... If Lew had £1 for every person who has said that to him, he'd be quite rich by now!

So next week we are heading to London for Lewis' Bravery Award presentation. We are so proud of Lew, he has a smile even when things are really rough, and he has had more than his fair share of rough times, and still he manages to smile and sometimes (like today) present us with the cherished gift of a laugh!

If you havent already visited, and even if you have, please please take another look at http://www.postpals.co.uk/. At this time of year alot of the children will be particularly poorly (like Lew is starting to be now) with the change in the weather and the cold/flu season beginning. One particular little boy on Postpals who really really needs as much love and affection as you can provide is Jack B. Jack's parents raised funds to take him to America for some ground-breaking treatment, unfortunately it has not worked out and Jack is now back at home. Please please visit his webpage on Postpals http://www.postpals.co.uk/pals/Jack+B. I can guarantee you will be touched by him and his story, and hopefully you will find some time to send him a card, a letter or a gift, at this time when he and his family need smiles the most. Here is a photograph of Jack.

Jack has Neuroblastoma. Please do visit his page and try and send him a card or a letter to brighten his room and help him to smile.

Please follow this link to Postpals for the latest news, as well as a photo of Lewis - http://www.postpals.co.uk/news.php.

Today Lewis received post from two Postpal posties - June Junko from IL (Illinois?) and from Julie Barrett here in the UK, Devon. Thank you so much June and Julie for your lovely cards and the Barney DVD from Julie. They will go on Lewis' postpal wall which he loves to look at often as its also his playroom, but we always have to pause for a minute or two so that he can gaze at his bright and colourful cards, letters and pictures from Postpal posties.

Before I forget, the fashion show is going to be HUGE, our local ITV news programme (Calendar News) are going to be filming on the night, and the local newspaper (Freepress) will probably have photographers there as well! And if you are after a last minute ticket, I dont have any left but Alison may have 10-15 so please do give her a call (07840273597).

Here is a photo of our brave little boy, sneaking into mummy's bed as he's not been well the past few days.

We've had a busy weekend here in Doncaster and Lew has spent some time with his friends. We walked to Lakeside Village with Livia and Mun (in the rain!). Livia gave Lewis a very cute green soft rattle thing which Lew enjoyed hearing rattle as we bumped along! And later we went to Normanby Country Park in Scunthorpe with Jay and Luke! Lewis will be presented with his Bravery Award on Monday 22nd October at the Best Wellchild Childrens Health Awards 2007 at The Oval in London. On Tuesday 23rd October, BEST magazine will feature an article about all the winners from the Awards so please do go out and buy a copy!

The Awards will be televised on The Community Channel (Sky channel 539) in early December. I will let you all know nearer the time what the exact air date/time will be. http://www.communitychannel.org.uk/ and http://www.wellchild.org.uk/

Thank you very much to Helen Brierley for the AMAZING blue card for Lewis' new blue room. We are going to frame it and put it on Lew's new bedroom wall!

Also thank you very much to Chris, Sue and Alice for the lovely card - this has gone up on Lewis' post wall and this will also be featured in the next update.

And to finish, a poem for all the very special little boys we know and love and could never imagine living without.

As I Watch You Sleeping As I watch you sleeping, my problems seem so small. The rewards you have to offer me, are so big and so tall.

As I watch you sleeping, I realize just how great your accomplishments are. I know how much you struggle to have made it this far.

As I watch you sleeping, I can't imagine how my life would be without you. Even through the hard times I'd be lost without you.

As I watch you sleeping, I see just how much you have brought into my life. All the joys and happiness, all the wonder and excitement.

As I watch you sleeping, I am overcome with such love. Your sweetness and happiness, are something I can't get enough of.

As I watch you sleeping, I think just how lucky I am. To be the mother of such a beautiful little boy.

As I watch you sleeping, all of my worries seem to melt away. I know that no matter what happens, together we can make it through another day. (Thanks to Anna Bovell for that poem - www.caringbridge.org/visit/nathanbovell). Here are a couple of photos of Nathan.

We are very excited as we will be meeting Nathan and his mum and dad (Anna and Andy) on Tuesday at London Zoo! It will be great to finally meet up with Nathan and Anna as we have been online friends for several months now and with Lewis and Nathan being so very similar in condition, it will be an experience for both sets of parents to meet another child like ours/theirs!

And here is another photo of Lewis' friend Declan (http://www.declan-kelly.com/). We are hoping to be able to visit Caroline and Nathan in December.

And finally finally (again!) is a photo of my gorgeous brother Jason taking part in a cycling marathon in August. My brother Jason, like my son Samuel, has severe haemophilia A. He has a fantastic website at http://jasonpaultolmie.blogspot.com/. Please do check it out.

Just some photos

It's been so warm and sunny, we've spent alot of time outside, walking round the lake, feeding the ducks, walking to Asda (to buy more bread to feed the ducks!), and sitting in the garden, watching the cats do mad things (like wee in my seed pots) and watching the clouds and the birds in the sky! Lew and Samuel had their hair cut last week. We also met Lew's new Bluebell Wood Hospice carer, Joanne, who will work alongside Marie who has been looking after Lew for several months now. Yesterday we went to the cinema to see Transformers - if you like this kind of film (which we do) it was flipping amazing! This is Lew getting ready for bed the other night. This is Lew being entertained by our fantastic OT - she really is THE BEST! We had a rep out to try Lew in some new chairs as he has totally grown out of his JENX giraffe. In this pic he is seated in a Triton seat and he has a B&Q funnel on his head ... Jess (OT) had the other funnels on her head!

Sometimes when the weather is good, Lew and I lay on the trampoline and look at the sky.

We try to decide what the clouds might be and we watched the birds flying overhead. Its super relaxing!

This is Tabitha relaxing in the garden ...

We managed to get back to Musical Minis this week! It was so busy, and very noisy as usual, but Lew enjoyed it!

We went to visit Mandy and Kirsty at Fundays. Kirsty had her birthday last week too - she was 16! Lew was spoilt for choice over which gorgeous blonde to look at first!

One morning we went to B&Q and Marie treated us to a coffee in the cafe, very nice, particularly the bacon sarnie!

This is the chair we got for Lew from Freecycle! It makes a lovely change for him to be sat in a comfy chair (until his new seating system arrives). Thank you so much Karen!Lew got this super cool card from his Grandad Skinny! It was a well done card for winning the Best Brave Child Award.Lew also received this brilliant Get Well card from Hannah Cann.Portage loaned us a selection of cool sensory equipment for Lew to play with. One of the items was an insulation blanket (like you get if run a marathon!) and when Lew lays on it, as he moves about it crunches and crinkles! As we have to swap it all next month, I have been out and bought our very own crinkly blanket from the local camping shop for £2.50 BARGAIN!Look at this totally cute little ... coot .. or moorhen? Which one is it? I can never remember! These ones are born/hatched with little red heads but the adults have white beaks - any answers on the guestbook please!

This is Tabitha chilling AGAIN .. probably just after she weed in my seed pots!

Lew's tummy has been sore so he has been on antibiotics so not as many smiles as usual, but hopefully he will feel much better soon.

Just a few quick mentions for Lewis' friends:

Nathan just came out of hospital after some surgery. He's doing okay but please do think of him and visit his guestbook (link on this website) and send on your thoughts and prayers for a speedy recovery!

Declan always needs lots of extra love and kisses, cos he's just so scrummy! So please remember to visit Declan's website too (again link on this website).

Cameron has been a bit under the weather, and Jayne and Phill's cooker has broken! So they need some lurv too!

Thank you Sian and Jamie for sending my birthday cards!!! They were postmarked 25th June, but the arrived on 28th July!! Just a month late! But just as lovely to receive regardless of the late delivery!

And a huge thank you to our colleague (ex in my case!) and friend John Lockhart for his very generous donation to The Lewis Jeynes Fund. Thanks John!

PS I HAVE ADDED SOME NEW VIDEOS TO YOUTUBE - http://www.youtube.com/user/SmnthJeynes