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Wednesday, March 25, 2009

Farm today

Today me and Lewis went to Wentworth Family Farm near Rotherham. It was a lovely bright sunny day although a bit cold ... so we were surprised when out of nowhere it started pouring with rain! It made us laugh as we had to hide in the barn with the turkeys and the rabbits! Lewis got alot of attention - the goats hoped to get some food from him!
Here we are in the barn with the turkeys! The male turkey was making alot of noise which made me jump and made Lewis laugh!
This goat was VERY friendly and Lewis loved to get really close up to him!
These little goats were so cute and tiny and had tiny little bleats!
In the food bucket is a little tiny kid! Awww!

Wednesday, March 11, 2009

Lewis' loaned MyTobii

Lewis has been spending alot of time on his loaned MyTobii at home. Thank you to Mick and Bill at Special Effect (www.specialeffect.org.uk) Lewis has on loan an amazing piece of technology! An eye pointing computer which he is learning to use both at home and at school (school purchased a computer for him at school, but we cant afford one yet at home - they are around £20,000!). Lewis loves to play on the games on his home MyTobii.
And we just this week received in the post a whole new bundle of games from Special Effect which Bill put together just for Lew so there is alot of focus on In the Night Garden (Lew's favourite TV programme!) and on photos of his friends and family!
Thanks to Mick and Bill at Special Effect - we love it!
And to all Lewis' friends who visit his website - please do take a look at the Special Effect website. It is a charity and does rely on donations to continue its amazing work into helping children and adults like Lewis.

Thursday, March 05, 2009

Lewis update

We had a hospital appointment today with Lewis' neurologist. It was a really good meeting and we felt alot was achieved. After feeling so low about the Lyme Disease result, it is great to feel positive about the future for Lew.
First of all, we have confirmed that he will not be having the surgery on his legs - we had originally believed this was surgery to re-align his hip, but we then discovered it would also involve cutting Lewis adductor and abductor (not sure if those are the correct names!) muscles in his thighs - and muscles dont grow back - and given that we dont know what Lewis condition and therefore prognosis is, we cannot risk having surgery like this as one day he may be cured and we want him to be able to walk again.
Secondly, Lewis will be having nerve conduction tests. These have been put off because Lewis used to have reflex anoxic seizures (at extreme fear/upset he would hold his breath reflexively - ie. he was not in control - until he turned blue and passed out). Having the nerve conduction tests would have triggered the RAS and so therefore would have not given any clear results. Now that Lewis has grown out of his RAS, we feel it is the time to have the tests so these will be carried out in the next 2-3 months. The tests involve sending small electric shocks through Lewis' nerves to test the time it takes to get a response - if the nerves are damaged, the response will be slow or non-existent.
In addition, we are hoping to get a meeting soon with a doctor who is involved in adult deep brain stimulation. This treatment has been carried out with huge success on a test group of adults with neurological conditions. A doctor in France is pioneering this treatment on children and we are hoping to be able to meet with this doctor in the near future. Until then, Lewis will be seen by the adult doctor in Sheffield as there is the hope that this treatment will become available for children in the UK very soon.
We also found out today that Sheffield Childrens Hospital is getting a new super brain scanning machine in April and Lewis on the waiting list for one of these specialist scans. It is like an MRI but much more detailed and may pick up something that the regular MRI did not.
So we have alot going on over the next few months.
Thank you to everybody for your very kind messages about the Lyme Disease test results. I did receive text messages from a couple of people but I dont have the numbers stored in my phone so was not aware who they were from - so thank you to those who texted too!

Tuesday, March 03, 2009

Lewis - Lyme Disease

We today had the results back for the tests for Lyme Disease - these came back negative - Lewis does not have Lyme Disease. Thank you to everybody who encouraged us to pursue this - it is better to know than to wonder.

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!