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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

5 comments:

Anonymous said...

hi,
You have been waiting a very long time for this! It doesnt seem like its tommorow, does it? You (and me, and im sure loads of other people too) have been waiting so long it doesnt seem to be true. (i dont know how to explain it! sorry)

lol, you never know what brussel sprouts can do!

I am starting to feel really nervous but happy at the same time, so you are not the only one!

Thinking of you all and wishing you all the luck in the world :)

Love Sian
XxxX

Jacks family said...

Hi, we will be thinking of you all at 2pm, we really hope you have a positive appointment.
We will check by to see how it went, but for now, we are praying for a good meeting, sending you our love xx www.caringbridge.org/visit/jackmcgrath

Anonymous said...

Can't believe its so soon now..
thinking of you all,
Laura

Anonymous said...

Hello :)...If you traavelling to great ormond quite often.. Samuel could stay at ours in the holidays..so youve got one less thing off your mind :) Only if you want :) LOVe youu alll xxxxxxxxxxxx
Daisy and Millie :D xxx

Lawse x said...

thinking of you all..
take care,
lawsey x

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!