Lewis Jeynes's Fan Box

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Thursday, September 24, 2009

Update

Today we saw Lewis' neurologist for an update.

There is a meeting of neurologists tonight at which they will discuss Lewis's MRI scans and then let us know the results. The doctors are still trying to decide if the changes in Lewis's cerebellum are an infection which has been and gone or one that is still progressing. The neurologist mentioned that they would have expected to have seen degeneration in his brain because of his 'degenerative neurological condition' (which we found very upsetting as we've never considered this) but we still hope this is a post infection stage and that the changes/damage will stop or has stopped.

A further EEG, new nerve conduction tests and a gag reflex review are being arranged. Its upsetting to think that Doctor's expect Lewis to degenerate further and are not surprised when he does, we still hope we can find something to halt that process and start the road to recovery. Nothing will stop us looking for the answers, Lewis is too brave and gorgeous and deserves to find the cure he needs.

It was also very upsetting for the doctor to say they would do a further MRI in 2 years. All I can see is Lewis' life stretching ahead of him like this, with no hope and no cure. To us 2 years is a lifetime - anything could happen in that time and we've been so hopeful with Lewis' response to antibiotics with his improved head control and cognitive abilities and now with the changes to his MRI we feel like we are taking a huge step back to square one where we know nothing and anything could happen - so it was a very tearful appointment.
We love you Lewis x x x

Saturday, September 19, 2009

Walk4Matt 2010 and Hugo Mouse

Lewis has had a good few days and has been super smiley and happy. He's spent some time on his eye computer at home which he loves and I really would encourage you to sponsor this fundraising event to help raise money for the charity that loans Lewis' his eye computer. The computer costs around £20,000 to buy so being able to borrow one is really a massive advantage for children like Lew .. so please do sponsor http://www.walk4matt.org/ and help to raise money for this very worthy cause!
Also, another website we would urge you to visit. Sarah Kidd approached us a little while ago asking if Lewis would like a Hugo Mouse and book. Hugo is a handmade soft toy mouse with his very own embroidered 'special words'. He also has his very own hospital identity bracelet so that he doesnt get lost! The idea of Hugo is to go with a poorly child to the doctors / hospital / everywhere really! to keep the child company and to make the experience less harrowing. Hugo comes complete with a little book of photos of the child with family members and friends so the child can have some familiar faces to look at and also doctors and nurses can interract with the child and Hugo by looking at the book. Lewis loves his Hugo and his little book and Hugo does go pretty much everywhere with Lew. You can find out more about Hugo (and see some photos of Lew!) on Hugo's website http://www.wix.com/hugoshope/Hugo.

Friday, September 11, 2009

A very worthy cause - please sponsor!

As you all will know, Lewis has (on loan) a MyTobii eye computer which he is able to play games on and one day (we hope!) will one day be able to use to communicate with! He uses one at school, so having one at home to use as well is absolutely brilliant for Lew and for us! Well the charity that has let us borrow the computer is called Special Effect and Matt Hampson is doing some fundraising for them so that they continue the amazing work they are doing so please please visit this website and sponsor Matt! http://www.walk4matt.org/ It really is a great cause!
With regard to Lewis - he is doing so well on his antibiotic treatment and we have been so very very positive about him actually making a recovery! However, we have been told that after his recent MRI scan there are changes to his brain. We are seeing Lewis' neurologist on 24th September to discuss these results in detail, but for us its a very harrowing time as we feel like we are back at square one - we could lose Lewis. We have always focussed on the fact that he has no damage or changes to his brain and that as long as this is the case, there is always the possibility of a full recovery at some point in the future. Now we are, basically, scared that Lew could begin to deteriorate again. We will, of course, let you know the results of our meeting with Lewis' neurologist later this month. Let us hope and pray that it will be something we do not have to worry about. We love you Lewis, so much x x x

Friday, September 04, 2009

Some amazing photos of Lew

Sorry its been a while since an update on here. We have been keeping Lewis' facebook fan page up to date as its so much quicker and easier than on here but we really did want to share these amazing photos with everybody who cannot access facebook.
Lewis' head control has improved amazingly since he began on antibiotics around 8 weeks ago. This week I have been practicing Lew's sitting up ability and here are some photos of how well he's doing! Please bear in mind that before he started on the antibiotics, in this position his head would have either fallen backwards with no neck/head control at all, or fallen forward on to his chest. He would not have been able to hold his head up like this at all, and certainly not been able to turn it to the side to look in the mirror on his wardrobe!! Amazing!

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!