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Saturday, December 16, 2006

Saturday 16th December 2006

Hello! Well its about a week in to our blog, and I am afraid I'm not very punctual ... a bit erratice really! But the fact is that we're really trying to enjoy our time at the moment, with the run up to Christmas, and with so much to do, so many people to see! We're just making the most of the flurry of social engagements! But we do have a nightmare ... went to wheelchair services on Friday. They tried Lew in a child wheelchair, absolutely no support whatsoever (have to try it to cross a box ... forms forms forms) then tried him in a disabled maclaren buggy - very good, but not enough support, so that crossed that box too. Well the next appointment they have for Lew is 20th February ... but seeing Lewis they realise we cant wait that long and so they have made us a special emergency appointment on Tuesday (19th) at 1.30pm ... arrgghhhh we have a hospital appointment at Sheffield for Lewis to see the metabolic specialist at 2pm .... heeeeeeeeeeelp! So in a real quandary now ... need to talk to James about that one! See if special seating can see us on Tuesday morning instead of Tuesday afternoon, fingers crossed! So what have we been up to this week? Wednesday we were visited by Margaret Goodwin (SENCO) and her colleague Fiona. Lew took quite a shine to Fiona and kept blowing her kisses! Saucy! Anyway, as our jenx giraffe chair hasnt arrived yet, they have ordered one for nursery and it was being delivered to their office on Friday (yesterday) and so they are going to allow us to have that chair at home until our jenx giraffe for home finally arrives! We should get that early next week. We spent the afternoon with Denise, Maisie and Oliver watching Monsters Inc, drinking tea and being amused by Oliver's attempts to drive his poor mother completely bonkers!!! But he is soooo gorgeous, he can get away with anything! Wednesday evening we had George and Anna stay over which was lovely. They are just the most wonderful children and we can quite happily say that we adore them! It was my dad's birthday on Wednesday too, but I FORGOT whoops! Thursday Kath (physio) came to see Lew. She showed me some exercises to help him with his breathing and also for when he wakes up in the morning. You see when we put Lew in bed, he stays in exactly the same position until morning as he cannot move himself. So Kath showed me some exercises to get his circulation going again before he gets up. After Kath had gone we went to nursery and had a lovely day (as usual!). Friday was our wheelchair services appointment. They were so kind and helpful, but bless Lew really didnt like the wheelchair and he had an RAS for them. It does frighten people so! Friday evening I went out with the wonderful ladies from Lewis' nursery for their Christmas Meal ... we went to China Rose in Bawtry and it was scrumptious! But I am soooooo old and soooo tired, I was ready for my bed by 10.30pm!!! So here we are again at today! Well I was all lined up for a LOOOONG lie in but Richard and Teresa invited us to join them in a visit to Sundown Adventureland (a fab theme park for children aged 2-10) so I dragged myself out of bed and we went there. It was great, Lew was sooo excited to see Luke and he enjoyed meeting Father Christmas (again!!!) and getting a present, and seeing all the children playing. It was cold, but great. Later, Teresa, Luke, Samuel, Lewis and I popped up to see Olga, Chris, Natasha and Iliya (sp?) for a lovely cup of tea. Olga was so kind, she fed all the children! Lew was soooo tired though, but he still enjoyed seeing the older children play. We came home around 6.30pm, James went off to his poker night at Richard's, and Lew had his bath and I've just put him in bed. He enjoyed his bath and we enjoyed our story (Fox Busters by Dick King-Smith) and Lew was soooo scrummy! He didnt want to go to sleep (even though he is sooo shattered!) so he kept being so cute, knowing full well I cannot resist and cannot leave him easily when he is blowing me kisses and trying to talk to me! Oh I must tell you, at Olga's house, Iliya (sp) bumped his head and I said to Lewis 'oh he's bumped his head' and Lew put his hand on his head and made the 'h' sound and then put his hand on my head and made the 'h' sound and he was doing the same in bed and pointing to nose, eyes, mouth and then blowing more kisses so you can imagine it was VERY DIFFICULT to resist and to leave him to go to sleep! But I finally managed it! So now its my turn for bath and then bed as we are up early tomorrow to join Yolanda, Stephen, Naomi, Joshua and Joel at church in Scunthorpe as we have tried to get there several Sundays in a row and it just hasnt worked out with hospital admissions and illness and bla bla bla! But fingers crossed tomorrow we will manage it! Only 8 shopping days until Christmas ... does that include today? If so, I think Asda is shut now so better make that 7 haha! Love to all x

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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!