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Saturday, December 09, 2006

Saturday 9th December 2006

Well ... 8th December came and went and WE SURVIVED! That date has had such a huge significance for me (us I think) this past few weeks, since we heard the doctors were testing Lew for battens disease, and now its gone and past and we're all still in one piece because ... Lew has tested negative for battens, phew !!!!! We are now awaiting results from a gene test for dystonia, and we are seeing the metabolist on 19th December who will be wanting to test for creatine deficiency and mitochondrial disease. These will require bloods so Lew will have these when he has his next MRI early next year. So for now we can relax and enjoy Christmas and hope that Lew doesnt have any more major epileptic type seizures. He's been continuing to have very mild ones (conscious) in the night so either James or myself has gone up and laid with him in bed to comfort him while they are going on and of course to monitor if they worsen and we need to give Lew his medicine. We have been prescribed a new medicine called something I cant remember ... keppras I think. We start it on Monday. It should (if it works) have a major impact on Lew's twitching ... fingers crossed! Its a sad day for us as well though ... because Aunty Nicola, cousin Evie and nanny have all gone home today. They have spent the past week with us and its been so fab. Aunty Nicola has been cooking fantastic meals every night out of my very paltry cupboard (she is a magician I am sure!) and Evie is the most wonderful little girl you could ever ever meet and we love her to absolute pieces! Lew has had a wonderful time spending time with his nanny. We were very sad to see them all go. But they will be back early next year for another visit, hooray! Thank you to Uncle Jason for our lovely christmas card and for Lew's and Samuel's presents which they will be VERY excited to open on Christmas Day! So today we are going to test drive a car (mazda 5) and thats about it! We decided to go out last night, as a christmas meal out for the neighbourhood bunch of friends had been arranged for months but we really didnt think we'd be going, whatever the results were yesterday at the hospital, but we felt so elated (that is the right word I think!) that we decided we really needed to share our happiness with our friends and neighbours so we went out for a lovely meal at Balrams and the company was just awesome, totally the best meal out we've had for a loooooooooong time! Thank you to nanny val for babysitting Lew! Sorry we kept you up so late! I had a lovely lay in this morning ... not through hangover as I had only a couple of glasses of wine - cant let go completely as Lew still might need us to be responsible parents in the middle of the night!! - but because I was finally able to sleep and relax for the first time in a few weeks! Oh and Friday night, oh it was the best .... my sister Nicola plucked my eyebrows (she used to be a beautician) and it was the most relaxing thing I've had done for ages and I said to her she could pluck out all my eyebrows and I wouldnt care because it was just so lovely to feel so relaxed and totally un-stressed for a few minutes! It was wonderful to see Samuel after a week away, we had the most scrumptious cuddle! And I hope so much that he was good for Aunty Tania! Thank you Tania, Nathan, Daisy and Millie for looking after him this week! I hope you gave him plenty of school work to do! So I must make sure I book Denise and I in for that back massage at Bliss! Well, must go and get dressed and such like! Lots of love to everybody, we're having a very loving day!!!

5 comments:

laura said...

YAYYYYYYYYYY :)

SO happy for you guys

:)

Wendy said...

Hurray Hurrah Yippeeeeee!!!!!!

It's wonderful news - roll on Crimbo now! Can't wait to see you all!

Lots and lots of love

Wendy xxxx

Nicola said...

Morning!

Just to say me and Evie had a fab time staying last week and seeing you all and especially Lewis. Evie has taken such a shine to him and i have put some of the recent pics of you all in her little photo album so she can always see you when she wants. She still thinks you are her mummy #2! Thanks ever so much for having us and we will have to sort out a time to visit again early next year.

Love always

Nic and Evie (and Lee!) xxxx

Lucy said...

Hey guys, great news!

The blog is a brill idea, we are enjoying keeping up with your news.

Can't wait to see you all on Boxing Day (if we don't make it up to Donny before then - watch this space....)

Lots and lots of love

Lucy, Mike, Katy & Ems xx

Smnth & Co said...

Hello everybody, thank you for your lovely messages!

Will do an update later today.

S 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!