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Sunday, April 29, 2007

off to London

well in about an hour we'll be on our way to London to stay overnight ready for our appointment at Great Ormond Street Hospital tomorrow. This appointment has been a long time coming (we've been waiting since January!) and although we are all super nervous and apprehensive (and more than just a little bit stressed and scared) we also know that this is just the start for us. The appointment tomorrow is a 2 hour assessment with Professor Robert Surtees. He will decide if Lewis needs to go back (we are assuming the answer to that will be YES!) and what tests Lewis will need doing. So this is the first visit of many to GOSH we are sure. Please think of us at 2pm tomorrow when we start our 2 hour appointment. Lewis will be prodded and poked, but all in a good cause! Who knows, this Professor may be so totally amazing that he takes one look at Lew, says feed him brussel sprouts 3 times a day and he'll be fine!!! Ho hum! We will text those whose numbers we have after our appointment and we will be back in Doncaster on Tuesday. Our very good friends are staying in the house to feed the cats, the grass and the plants (haha) so please do say hello if you spot them! Thats it for a few days from us. xxxx

Wednesday, April 25, 2007

Extremes

Thank you to all our postpals who have sent Lewis cards and letters - I am sorry I havent had chance to thank you all personally yet - but we will when we get ourselves sorted out! It is quite amazing, the extremes of emotions one person can feel, and in such a short space of time. We are exciting about going to London on on Sunday for our appointment with Professor Surtees on Monday at Great Ormond Street, but at the same time we are terrified. It is proving to be an incredibly difficult week with huge ups and downs. I am just thankful that our friends are such good friends that they understand the stress we are under and that if we are quiet or a bit miserable or distant, there is a very good reason why. Again, its been a busy week so I'll just show you the photos!! Maisie and Oliver enjoying chocolate ice cream! Lewis having a lovely time with Mandy - he does LURV blondes!

At the farm and in the garden with Maisie and Oliver

Very sorry to Lewis' loyal fans for the delay in updating the website - I hope to be more organised once we have GOSH behind us!

Samuel and Jodie by the lake Mad Charlie cat!!! Gorgeous Lew waking up with a smile which he does alot lately! He's such a happy young man! A rather blurry photo of our good friend Olga

Lewis at West End Club with Jodie and Angela

Lewis feeding the goat creatures at Wentworth Farm!!

Being wheeled round town today by Maisie! I'd also like to send our love and hugs to Gill and Wayne and all of Gill's family, as Gill's dad very sadly passed away this morning. He had been ill for a little while and I know that Gill is comforted to know her dad is no longer suffering, but even so, its a very fragile and difficult time for them and we hope that fond memories will soon replace their sadness. We love you Gill and Wayne xxxx

Tuesday, April 17, 2007

Tractor Tom!

Hello again! Well its been busy since the last post! Its all go go go here! Lew has been a bit under the weather but he's still managed to smile and enjoy himself alot and we've been doing lots of activities and seeing lots of friends! There are sooooo many pictures so I will cut out all the talking on this post and just let you enjoy the photos! We went to Isaac's 2nd Birthday Party BBQ on Sunday afternoon and today (Tuesday) we went to Lesley's farm and fed the lambs and had a tractor ride!!! Tuesday afternoon we took Jane and Joseph to Musical Minis and then came home for a relax in the garden! Enjoy!
And a quick thank you everyone at Gifford (http://www.gifford.uk.com/) for their very generous donation of £622.71 with which we have purchased Lewis a Jenx Monkey Stander! Lewis' uncle (Andrew Pettifer) has recently emigrated to Australia with Aunty Wendy and cousins George and Anna (you can read more about them on their blog (http://thepettifersdownunder.blogspot.com/). Gifford was Andrew's workplace here in the UK and the money raised was his leaving present money and he asked that it be donated to Lew's fund so thank you to Uncle Andrew as well and of course to Aunty Wendy, George and Anna. Thank you also to all those who have donated to Lewis fund so far. We are waiting for Lewis downstairs room to be finished (it hasnt been started yet!) and then we will be able to use money from the Fund to purchase sensory equipment so watch out for more info on that in the next 6-8 weeks!
I have mentioned before, but I MUST mention again (!!) my friend's website http://www.annmarieveitch.co.uk/. Annmarie is an awesome photographer with a VERY special talent AND .... if you look on her website you will find some photographs of US as well! So please take a look!
The view on our lovely walk around the lake over the weekend
PS this is my pic of the lake, not Annmaries! If it was, it would be much better!!!

Saturday, April 14, 2007

Summer has arrived whohoooo!!

Make the most of it ... today .. is SUMMER!!! Sorry we have been so quiet. We have just been so very busy, with it being Easter holidays from school and trying to fit so much in that we wouldnt normally get chance to do. So Saturday 7th April, we had a bbq in the garden with our friends and neighbours, we were positively draaaaaaaagged round the shops by Nena (only joking N!) to find her an outfit to wear for our girls night out then it was pretty much time to start the preparations!! You know, hair, make up, clothes, body transplant!!! Jodie and Shannon had come across to see us and they had a lovely time playing with the children and also Shannon is the MOST AMAZING hair person!! At 7.30pm we were ready for the off. Lew was already in bed and tucked in for (fingers crossed) a quiet night. There ended up being quite a bunch of us and we really had the best night so thanks to Olga, Teresa, Munmun, Van, Denise, Nena, Helen and Jill for making it such a great opportunity for me to let my hair down and be a normal person for one night, rather than being 'Lewis mum' lol! We got some champagne bought for us (thank you sooo much mystery donor!) and then for me it was back on to the water so I would be all ready to go if there was an emergency with Lew - which (phew!) there was not! Sunday I got up early, but then went back to bed for a read! Lew had his normal lie in - he is doing so much better now that we are leaving him to sleep in until around 10am. We saw Van and Steve and all the children which was really nice. It was a lovely day, lots of sunshine, and so we sat in the garden having toasted cheese and tomato sandwiches (yummm!) and strawberries! Lew fell asleep on James lap, wearing Jay's hat because the sun was so bright! Munmun and Livia also came to visit and the children had great fun on the trampoline and other garden toys, and Lew enjoyed watching when he wasnt snoozing! Around 5pm we went to Ma Hubbards for tea and it was delicious!!!! As it was Easter, all the children got light up bunny ears! We were all ready for an early night so came home to bed! On Monday, Lewis enjoyed seeing his granny and grandad. We went for a walk around the lake and to the Lakeside Village. We were hoping to have a cup of coffee, but all the coffee machines in the cafes seemed to be broken! On Tuesday Lewis had his appointment back at the dermatologists to find out if the allergy patches had shown anything. In typical Lewis style, the results were normal!! Marie had come with us to the appointment, and afterwards we came home to get Samuel and Marie went home to get Daniel and Sian and we all went to the superbowl for a game of ten pin bowling which was great fun. When we had finished there, we went back to Marie's house for a cup of tea, Lew loved seeing her gorgeous cats, and he had a lovely cuddle with Marie and watched some TV while the rest of us read funny joke books! On Tuesday evening Steve came over (as Van had gone to visit relatives with the children for a few days) and him and James made THE BEST curry ever! It was soooo gorgeous and they are definitely going to be making it again as we all enjoyed it so much! It was so spicy, we had super hot tongues and lips! On Wednesday, Jayne (Homecare) came and bathed Lew - Lew was smiling so much - he is so happy when he's had plenty of sleep! and then we popped round to see Rosalind and co for a cup of tea! We were due to go to hydrotherapy, but Lew's rash was still not completely gone, so instead we went to Fundays and met Karen and Craig, Paul and Stephen, Daniel and Heather there and Matthew came with us too. Lew had the best time watching the children playing and Matthew met some friends he knew so he had a great time too! Later, I dropped Matthew off and collected Jonathan which was a nice surprise for Samuel. James was away in London Wednesday night until late (around 12.30am I think they came in!!) as he had been looking at a property with Richard and Steve. On the way home from the train station they somehow ended up at an Indian restaurant on Balby Road (!) and ended up walking home somewhat drunk and filled with vindaloo! On Thursday, Mandy (Homecare) came over and bathed Lew and Granny came for a surprise visit as well so was able to help out. I took the opportunity to pop to Tesco for some supplies as I was having some guests for lunch. The weather started out very promisingly but while we were having our lunch, the weather turned very chilly and so our lunch afternoon was cut very short! So instead, Lew and I went into town and nosied round the shops for a little while, bumped into our very good friends Jodie and Nicola, and then went for a drink at the Thorntons Shop at Lakeside Village, lovely! We spotted Wendy (Musical Minis) in Thorntons buying chocolate - yumm! Thursday night was early night again! Jodie came over to stay as she was a bit fed up at home. Friday morning, we got up a bit late, and so I had to let our friend Yolanda know that we might be a little bit late as we had arranged to visit with her. Jodie got Lew ready while I showered, etc, and from the moment Lew woke up he was full of smiles! Once we were ready to set off, we collected Jodie's sister Courtney and Jodie's friend (wonderful hair stylist!) Shannon and her younger sister Chloe and we set off for Cleethorpes. Yolanda and Stephen live very close to Cleethorpes so I took the girls to save them getting the train, and also because it was company for me and Lew on the journey. Lewis positively fell in LURV with Shannon and spent most of the car journey staring at her!!! I dropped the girls off at the seafront then (eventually!) found my way to Yolanda's for a very warm welcome! We had the best day visiting with Yolanda and her family and Lewis was so excited to spend time with the children, particularly Joel! We also got to meet Yolanda's friends Marie and her husband, and their children Caleb, Samuel and Heather. What was extra great about meeting them was that Samuel had written to Lewis and us late last year and so it was really great to finally meet him, as well as his family. Yolanda and Stephen had prepared a delicious lunch and I was STARVING! Lew was happy to watch Cbeebies while we ate, and Joel went to sit with him in the lounge while we ate across the hall in the kitchen. Joel was so cute ... he said 'Why hasnt Lewis got any pizza?' - he wanted to give him some! Joel also has a lion that was a gift from his mummy and he has named the lion .. LEWIS!! Yay! So we had some photos with the lion too! We lost track of time and suddenly it was gone 5pm and I was due to go to Tae Kwon Do with Olga at 6pm so I had to let her know I would not be able to make it this week - but next week? DEFINITELY!! When we got home, it was just past Lew's bedtime so he went straight to bed! James went out to a beer festival with Steve and Richard and .. SURPRISE SURPRISE they had a curry on the way home! I popped up to Olga's for an hour for a lovely chat and some sparkly pink stuff. This morning (Saturday) we left Lew to have his usual lie-in, and then after his bath we went for a walk around the lake. It was already very warm at that time (around 11am). Then we went to Tesco for some shopping (such exciting weekends!) and then we went for ANOTHER walk round the lake but this time we took Samuel and Jonathan with us. We met Wendy and her children (Wendy does Musical Minis which Lew loves!) and had a nice chat before continuing our stroll. We met Munmun, Paulash and Livia also walking round the lake so they came back to our house for a drink and James and Paulash watched the Grand National on TV! Lew is in bed now, soooo tired after another busy day! James is watching the FA CUP semi finals and Samuel and Jonathan are back hibernating in the darkness of Samuel's room on their computers! Being outside too long in daylight must be harmful for them haha! James is out tonight again with Steve and Rich so if you are in town tonight - watch out for the curry monsters!

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!