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Thursday, March 01, 2007

Wind and rain!

What a day! We (I say we ... Nicola!) cleared up the aftermath of the birthday party yesterday evening while I sorted out Lew, then we watched TV for a bit and started to re-arrange the furniture. Then I got a shower and Jayne (Homecare) came and played with Lew and Evie and me and Nicola sorted out the dining room and finished tidying up. At 11am, Katie from Bluebell Wood came to go through Lew's care plans - which we decimated!!! All changed since we first drafted them! Frances from social services came with a rep to look at the garage to give a quote for the conversion. Nicola made us all a lovely cup of tea (except Frances as she came just too late!). The morning seemed to fly by! After everybody had left, we had a mad dance around the dining room, Agadoo, Superman, Birdie Song, etc (!!!) and then we calmed down and got ready to go to the outlet. As we set off, it was sunny and bright. Within 5 minutes, it was strong wind and pouring with rain!! Luckily we were prepared! Raincoats, raincovers (for pushchairs) and a sunny attitude!!! We went to Thorntons and had a lovely lovely lovely hot chocolate (complete with cream and chocolate flakes!) and Nic had a lemon tart and I had a double chocolate cheesecake slice! Lew and Evie were asleep in the pushchairs! Unfortunately, Lew woke having a seizure but it stopped after just a few minutes. However, it was followed by a 3 minute absence which he hasnt done for ages. He had another absence which lasted 6 minutes at bed time. So we think he might be working up to a major epileptic seizure again as the last time he had alot of absences, we ended up calling an ambulance in the middle of the night ... arrgghhhh! We had a wander round the shops, bought some healthy seeds and stuff in Julian Graves and then some not healthy chocolate in the Cadbury shop! Evie and Lew played in the soft play for half an hour. I sat with Lew and he loved watching Evie and some other children play! We got some great photos - will load them on to the computer at the weekend I expect. We walked home and it tipped it down again!! But we still managed to smile! When we got home, James played with Lew for a bit, Evie had her tea, and then it was bed time for the children. Lew was shattered, had his 6 minute absence (which was quite frightening for James as he hasnt seen one for a while) and then he was okay and we felt all right to let him go to bed. Nicola, James and me had a lovely tea in the 'new' dining room - we have moved the dining table into the conservatory and made the old dining room into a play room for Lew and then James went out to see Steve and Nic is on her computer and I'm on here, but soon I'm going to have a bath and go to bed as I am also shattered! We heard from our friend Helen that Lew was in the Freepress again (about the charity offering us a trip to EuroDisney), but I havent seen the article yet! They dont sell papers at the Yorkshire Outlet! James and I have decided (sorry Lee!) that we are going to kidnap Nicola and Evie because it is such a wonderful pleasure having them here! So Lee - if you want to see them, you'll have to come and live in Doncaster!

5 comments:

Anonymous said...

So glad you got your house back together after the party and have managed to get out and have some fun! Sorry to hear Lew has had a couple of seizures and absences. They must be so worrying. Please keep us updated... we are praying as always. Love, Yolanda

Anonymous said...

Aaaaw...hope Lew has had a better/good day today :)

have a great weekend and such like

take care,

lawsssssssse x

Anonymous said...

Got your website from the Doncaster free press dated March 1st 07.
We hope you all enjoy your trip.
Our hearts go out to you both with what you are going through with Lewis.
We'll keep checking for updates and such take care all of you.


Jo and Gaz (Doncaster)

Anonymous said...

belated birthday wishes Lewis hope you had a good day

Smnth & Co said...

Dear Jo and Gaz, thank you so much for your kind words. We have another trip to make before August - Great Ormond Street at the end of April. As Lewis' condition is degenerative, we will not know if we can go to EuroDisney with Bat-I About Kidz until nearer the time, but we hope to as it will be a wonderful opportunity for us to spend time together as a family, to meet other children, and for Lewis to be super excited by all the things to see!

Please do keep checking back for updates! I try to update most days, but sometimes I just cant face the computer and just want to go to bed!

Thank you also 'anonymous' for your belated birthday wishes for Lew. He had the best day!

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!