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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
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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.
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.
Useful links
- Post Pals - great site for helping poorly children smile
- Bluebell Wood Childrens Hospice
- The Mighty 'C' - my brother's amazing blog
- Kirsty A - a very special lady
- Nathan Bovell - scrumptious dude!
- Declan Kelly - gorgeous boy!
- Parents of Kids with Epilepsy
- My fantastic photographer friend
- Samara's video - please please watch
- Natalie Robinson - Lewis' LURV!
22nd October 2005
April 2006
August 2006
September 2006
October 2006
October 2006
30th November 2006
30 November 2006
1st December 2006
7th December 2006
7th December 2006
7th December 2006
7th December 2006
December 2006
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
5 comments:
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
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
Can't believe its so soon now..
thinking of you all,
Laura
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
thinking of you all..
take care,
lawsey x
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