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Thursday, September 27, 2007

BEST photographs taken this weekend

On Sunday, the Dome Leisure Park here in Doncaster very kindly opened half an hour earlier than normal so that we could have a photo shoot with Steve Hill (Steve Hill Photography, 01522 569 595 / 07970 848 228) for the Best Wellchild Bravery Awards magazine article. We also had some photographs taken around the lake and also at home. Here are the results ...
PS. This photo was taken of Lewis approximately one year ago (10th October 2006), so much has changed since then. Lewis was chasing Samuel around the bed.

Tuesday, September 18, 2007

September already?!

Lew and his friend Livia.
Can you believe its September already?
Well, some of you may remember back in July when Lew had his PEG fitted, he also had another biopsy and some blood tests. The results have come back ... all normal. We arent expecting any more tests for a while now (probably looking at a new batch of tests in around a year) so Lew can have a rest from tests and we can have a rest from worrying about the results.
Some very sad news however - Professor Surtees - the world expert at Great Ormond Street Hospital - died in August, at home, unexpectedly as far as we know. We had a 4 month wait to see Professor Surtees earlier this year and during this time we were told how amazing he was, how he had such incredible knowledge, more than anyone else in the world in his field. I did fear a few times that he may die before we got to see him - irrational or so I thought. Now, sadly, there will be parents of children with neurological conditions who will not benefit from his huge wisdom and I feel so sad for them. Our deepest sympathies to Professor Surtees' family. He will be missed by alot of people I am certain.
Back to our everyday life now.
At the beginning of the month we had a lovely day when Yolanda, Stephen, Naomi, Joshua and Joel came to visit us and sample one of James' and Steve's famous curries! It was wonderful to spend time with our very good friends and the children had a great time playing! Its a shame that we dont live closer together, but we do make an effort to meet up as often as we can.
Lew got to meet some very cute baby guinea pigs!
Samuel had a visit to the dentist in Sheffield where he was told what great teeth he has and to continue to look after them as well as he has been! He has a special coating put over his teeth to protect them from any damage as, due to his haemophilia, any fillings or extractions would have to be carried out either in the chair with no anaesthetic (oooouuuchhhh!) or under general anaesthetic. Of course, prevention is better than cure. But I must tell you, my brother Jason (Samuel's uncle who has haemophilia) did have fillings in the chair with no anaesthetic when he was a child- HOW BRAVE IS THAT?!
Lew enjoyed a couple of hydro sessions this month - he loves the water so much!So I decided to take him to a local swimming pool but unfortunately the water was soooo cold that Lew was even more clenched up than normal so that was a bad move! We came out of the water and sat poolside watching Samuel enjoying a swim!
Samuel went back to school this month after the school holidays. He was a little nervous as he has moved from lower school to upper school which is a big difference geographically as well as academically as he will be studying towards his GCSEs now!! He has settled in really well and is really enjoying his new lessons, as well as the independence of walking to and from school just over 2 miles away and being able to go into town at lunchtime with his mates!
Lewis' friend Luke had his 6th Birthday this month - HAPPY BIRTHDAY Luke! We still havent got him a present - just so disorganised combined with 'what on earth can I buy a 6 year old?!' so it might have to be a bigger effort at Christmas instead!
Work on our garage conversion started this month. The garage is being converted into a downstairs bedroom with bath for Lewis and is being purpose built - hoist, special bath, special bed, special flooring, etc. Its coming along really well and we're very very excited! Lew enjoys watching the builders, especially now they have cut a door through into the hallway so we have access to what will be Lew's new and very cool bedroom!
After our super mini holiday in Scarborough, it was great to be able to catch up with Lesley, Kevin, Callum and Tobey earlier this month when they came for lunch. We had lots of food and lots to talk about and Lew, as ever, loved having his mate Tobey around to play! As usual when we get to see Lesley and Kevin, we were so busy talking that I forgot to take any photographs!
Lew had an appointment with Dr Walker (PEG surgeon) for a check up and all is fine - come back in a year! What was exciting was in the waiting room we bumped into Marie and Cole from the Tuesday group at the hospital. Marie had given birth to her new son only 2 days before and Cole was very very proud to be showing off his new brother! We also saw Debbie and Matthew and had a good catch up chat. It was Matthew's birthday the following day, he is now 5! So big and grown up!
Lewis should be able to start nursery very soon as this month we had 2 meetings between medical professionals and the nursery team to go through care plans and risk assessments. The staff need some training on a couple of thing which is taking place this week, and Lew needs a suitable chair which we are all working on! And then he can start! We are so excited! It will just be 2 sessions a week for just 3 hours each, but Lew will benefit so much from being with other children and in an environment which is safe as well as stimulating and exciting. While I went into the meeting, Lewis got to spend an hour with Jill from the DRI playgroup which I think he really loved, but it tired him out alot and he was glad to see his mum after the meeting had finished! It was lovely also to see Lynda from the Tuesday playgroup at DRI who will be Lewis' learning support assistant when he starts his nursery sessions later this month.
We have visited Fundays Funcastle a couple of times this month. Lew loves it there as he can watch the other children play and also, if its quiet, he can have a play in the ball pool or come down the slide. Its also a great place for arranged activities like cutting and sticking and other great themed events.
Lew had his new car seat fitted in the car - it is soooooo cool! Thank you so much Granny and Grandad for buying it.
Just this weekend, Nick and Rachel came to visit with Phoebe and Heidi and we had a wonderful afternoon together. The children played really nicely and entertained us all greatly! Thank you so much Nick for the very posh skirting boards which make such a huge difference! And we all LOVED meeting their new puppy called George!
On Sunday we met Karen, Craig, Stephen, Daniel and Heather at Normanby Country Park for a lovely day out. Sadly, Lew started to feel poorly as the day went on.
Things are moving on Lew's 'Make A Wish' spa pool. The company (http://www.heavenathome.co.uk/) are coming out for a site visit, so we hope to bring you more news on that very soon!
Our tickets have arrived for the Best Wellchild Bravery Awards next month. We are soooo excited about that! The Awards are being held at The Lords Cricket Ground in London on 22nd October and in preparation, Best Magazine are interviewing and photographing all the Award winners so Lew has a photo shoot coming up soon!
The past couple of days, Lew hasnt been very well - nothing you can put a name too - he's just not been himself. His temperature has been erratic and he's been very sleepy and lethargic and he's been sick a couple of times. So yesterday Lew spent the WHOLE ENTIRE day in bed!!! He seemed alot better today after a nice lie in, so we went for a walk to Asda (so exciting!) but later this afternoon he started to flag again so it was an early night and fingers crossed he'll feel better in the morning.

THANK YOU:

Helen Brierley for Lew's Postman Pat postcard (from Pat and Jess themselves!) and for the fabulous card and mini storybooks which Lew has enjoyed listening to at bedtime.

Samuel (New Tribes Mission) for your lovely letter and the bouncy ball. We hope to see you and your family soon. Lots of love.

Wickersley School had a cake sale - thank you very much indeed for your huge donation and we hope you all enjoyed the cakes!

Giffords - ANOTHER tuck shop cheque! Thank you so much! Perhaps you could send us a photo of you all tucking in to your tuck shop so I can put it on here for all to see!

My gorgeous boys!

********FASHION SHOW UPDATE******** 100 tickets sold - only 100 left If you have reserved a ticket, but not yet paid, please pay asap or you may lose your ticket.

Sunday, September 09, 2007

Fashion Show, 9th November

UPDATE ON TICKETS - I have now sold my personal allocation of tickets so if you would like a ticket, please please contact Alison ASAP!
Tickets for the fashion show to raise money for The Lewis Jeynes Fund will go on sale this Wednesday - some of the proceeds from this event will be donated to Bluebell Wood Childrens Hospice.
Tickets are £5.00 each (under 14s free).
As well as the fashion show to present the latest SEEN children's fashions there will be a presentation by a local school of dance, live music, a raffle with some amazing prizes and an auction with some amazing lots to bid for!
The venue is The Holiday Inn, Warmsworth (formerly Moathouse), on Friday 9th November starting at 7.30pm.
Due to the restricted size of the venue, tickets are limited to 200 so please do get yours fast!
You can purchase your tickets by telephoning or emailing Alison (the most amazing fund raising person!) on 07840 273 597 or ALI72@blueyonder.co.uk.

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!