Lewis Jeynes: February 2009

Saturday, February 28, 2009

Lewis Birthday photos

Lewis had a lovely Birthday party at Daddy's house and then came home to open his cards and presents here - thank you so much to everybody who sent him a card and/or a present. He was very tired after a busy day, but he did love seeing his name on so much mail!

Thank you to Helen Brierley (Postpals) for Lewis' seed with his name on it! We shall have fun growing it!

Thank you to Maria and Michael (postpals) for the lovely card and the 'new home card'!

Thank you to Postpal Erin Fs granny and grandad for the lovely card.

Thank you to Evie Macreadie, Aunty Nicola and Uncle Lee for the lovely fishy card!

Thank you Michael for the Toy Story DVDs and lovely card!

Thank you to Marie and Sian for the bus card.

Thank you to Kathleen Brewer (postpals) for the lovely card.

Thank you Grandad Skinny for two birthday cards and for the money to buy some DVDs!

Thank you to St Matthews Sunday School (Postpals) for the lovely card.

Thank you so much to Nanny Val and Millie for the lovely space card and the Birthday Boy badge.

Thank you to Sarah for the Birthday letter.

Thank you to Tracy for the lion card with the stickers!

Thank you to Jenny for the brilliant hamster card!

Thank you to Lewis' school friends at Heatherwood and to the lunchtime staff for the lovely cards!

Thank you again to Helen Brierley (Postpals) for the lovely card!

Thank you Leona for the lovely pirate card and stickers!

Thank you to Sian and Jamie (Postpals) for the musical instruments, the £5 and the lovely card! (And for the letters!!)

Thank you to Karen (Postpals) for the Robots DVD and the lovely In The Night Garden card!

This card was from Mummy and Samuel and Tabitha.

Thank you to Grandad Skinny for the DVDs!

Here is Lew with all his cards and presents - thank you everybody!

This is Lew in bed on his birthday - the clock and date are wrong on the camera!!! It was taken around 7.30pm this evening!

HAPPY BIRTHDAY!!

Happy 5th Birthday Lewis!!! x x x x x

We hope you like these photos from Lewis' 1st Birthday!

Friday, February 20, 2009

Update

Sorry for the delay in getting this update done. We only just got the internet back!!! We went to see Dr Daymond at Nuffield Hospital in Newcastle and Lewis was immensely brave, having his examination and his blood tests. You are a champion Lew!! We now have to wait 3-4 weeks for the results of the blood tests for Lyme Disease - fingers crossed everybody! Also, Dr Daymond has discussed Lewis' condition with his colleagues and we are hoping to see a specialist - Dr Julu who is a Consultant Neurologist at Breakspear Hospital and Royal London Hospital. He the leading specialist in autonomic nerve function and he recommends that he should see Lewis for Cortico-bulbar function to study the Brain stem function and also to have an MRI of this area. Lew was due to have surgery on his hips at the end of March - we have asked for this operation to be postponed as it involved cutting Lewis' muscles in his thigh and of course muscle cannot grow back - so we want to see what happens with the Lyme tests and seeing Dr Julu before we go ahead with the surgery. So things are moving again - lets hope we can get some good news for Lew.

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.

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