Lewis Jeynes's Fan Box

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Thursday, May 28, 2009

Update

Lewis is alot better today after having a bit of sickness and a high temperature. We have also spoken to Lewis' paediatrician about antibiotic therapy and specialist physio as well as the specialist doctor who did Lewis' Lyme Disease testing. The specialist doctor has said: The tests indicate a chronic immunosuppressive situation associated with Lyme disease and Dr Schwarzbach recommends Chlamydia pneumonia testing, plus antinuclear antibody titre. The latter I think you have already had performed. So we'll let you know tomorrow if we hear any more!

Wednesday, May 27, 2009

Update

We are still waiting to hear from Lewis' paediatrician about when he can start the antibiotics. We hope to get something sorted very soon. Obviously every day we are waiting is a day too long. Lew has been ill for long enough and its very important to us that we get him on the road to recovery as soon as possible. Of course there are worries. My main worry is that Lewis has contracted Lyme Disease since he got ill and that he still has his underlying mystery illness, and that the Lyme is something extra on top. I am hoping with all my heart that this is not the case, and that Lewis' condition was caused by Lyme and that it can be reversed with the antibiotics and the intensive physio. We have also read that Lyme responds well to alternative therapies such as accupuncture, so we will look into this as well as time goes by. Thank you to everybody for your lovely messages. We are very excited, very hopeful, but also very scared!

Tuesday, May 26, 2009

UPDATE

Lewis' dad has spoken to the doctors. Lewis definitely does have chronic Lyme Disease. He should be started immediately on a course of IV antibiotics (this could be 2-3 years treatment) which will involve a drip for around 2 hours a day so he will have to have a port-a-cath fitted. As he starts to improve (we hope!) he will need rehabilitative physiotherapy. Its all VERY exciting!

Saturday, May 23, 2009

Test results

We have today had the test results back from the lab in Germany for Lewis. We will know more once we speak to the doctors on Tuesday (darn Bank Holiday weekend!) but here is what the results say: Lewis' CD57 cell count is indicative of a chronic immune suppressed situation caused by borrelia burgdorferi. We will let you know once we have spoken to the doctors on Tuesday what the next actions will be.

Wednesday, May 06, 2009

Update

Here is Lewis with a batch of post from Postpals! He loves receiving his Postpals mail!! Here is Lew at the park with Ethan. Here is Lew asleep on the garden swing after a busy day learning how to read with Mummy! Here is Lew with his Postpals post again! An Easter card from Postpals ... Another Easter card from Postpals! A lovely Easter card from our friends Angela, Len, Jenna, Ashley and Hannah in Wales! A very cute Easter card from Postpals! Some VERY cute eggs from Postpals - thank you! At the park with Mummy. Lewis picked a flower for me on his way up the drive from the school bus! Lewis and Rachel. Lewis and Samuel and the light up balloon! Lewis and me at the park in very sunny Twickenham! Lewis in Nanny's garden in Twickenham.

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!