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Tuesday, May 01, 2007

Home again

James' new glasses!!
A bit of mad bicycle parking!
Avin a peppermint!
Amazing water feature!
Strange statue
A giant Oidz?!
What a luverly day!
Such a happy chappy!
Found this strange bloke - think he was lost!
Outside the Design Museum (couldnt afford to go in!!!)
Some bloke rambling on about Ken Livingstone!
GENUINE Yorkshire crisps!!!!
For Harry Potter Fans ... Platform 9 3/4!
And so to bed .... Mummy's bed !!!
We got on the train at Doncaster at 10.49am and there was some confusion over our seats. We had booked the wheelchair space for Lew, but GNER had not booked the seat with the wheelchair space. Luckily there was nobody sitting there but it was frustrating, especially as we had been told to arrive 30 minutes early to be assisted on to the train anyway! Lew didnt travel very well and was sick on the train so ended up with just a t-shirt and nappy on for the journey! We arrived in London on Sunday to scorching sunshine and massive crowds of tourists - no they werent there to see us!!! We met my dad at the train station and we got a taxi to Ena's house to drop off our luggage then we walked back towards Tower Bridge, the Tower of London, etc, and had a shock at the cost of getting into the Tower of London so decided to enjoy it from the outside!!! We walked along the river past the HMS Belfast and we walked up to the Design Museum - we only looked in the shop as again it was too expensive to get in! We walked past the very posh restaurants on the river front and seeing the posh people sipping wine really made me fancy a glass for myself! Lew loved seeing his Grandad Skinny and enjoyed watching Samuel practising his 'Parkour' http://parkour.net/. We walked back to Bermondsey Square around 5pm and then Grandad went home at 6pm and Lew went to bed. James and I had a scrummy indian take away (takeaway in a box from the supermarket which had been reduced to half price £5.49 BARGAIN!) and some wine and Samuel had corned beef hash - very healthy NOT! I went to bed around 9pm and Samuel stayed up watching TV with James until after 11pm. And then Monday arrived. Lew had a very unsettled night and so we were all very tired. We tried to let him sleep in a bit so we got up around 11am. We booked our taxi to GOSH for 12.30pm and it arrived on time, but the traffic across London was crazy and we didnt arrive at GOSH until 1.20pm!! Our appointment was at 2pm but we were asked to arrive 20 minutes beforehand for Lew to be weighed and measured. We went up to the outpatients clinic waiting room and Lew and I sat reading books. Lew also enjoyed seeing other children playing and making lots of noise. Not long after 2pm we went into see Professor Surtees' registrar (cant remember her name! but she was absolutely gorgeous and very young!). In fact, she reminded me alot of Tia Carera! Lew liked her too!! She took Lew's history and asked some questions and then went to discuss Lew with Professor Surtees before we would go in to see him ourselves. When we did finally meet him, it was very strange because we had hyped ourselves up about him so much that to finally meet him was just so odd. He was incredibly quiet, alot younger than we expected, and .. well just not what we expected at all! But he obviously knew his stuff. He told us that looking at Lewis now, and having looked at the DVDs and photographs we had sent him before, and looking at the results of all Lew's tests (all normal results) that he had an idea of a diagnosis for Lewis but further tests need to be carried out. He is going to write a letter to us/the neurologist/our doctor to advise what to test for. All of the tests can be done from bloods except one which will require a biopsy to obtain a nerve cell. The best places to locate these are in the brain or in the rectum and obviously the rectum is alot less risky than brain surgery so Lew will have to go in for a general aneasthetic to have this biopsy done. All the tests will be done at Sheffield Childrens Hospital. James asked if the list of conditions Professor Surtees was asking Lew to be tested for were treatable or curable. They are not. Professor Surtees also suggested that Lewis go on a 3 month trial of steroids to see if this will have any affect on his epilepsy/dystonia. This will be a difficult time for Lew as taking steriods lowers the immunity significantly, but Professor Surtees did say that if the affects of the steroids are encouraging, it is possible to give steroids over a long period (eg. years) with a reduced risk of lowered immunity and other side effects, by giving a large dose once a month. So, not what we were hoping for. Its been a difficult 24 hours for us, but we have to move on and keep positive for Lew because we arent much use to him if we are moping and miserable. On the way back from GOSH we popped into a bakers and bought steak bake, cheese and onion pasty and doughnuts - a bit of comfort food. But we didnt really feel much else yesterday evening and after Lew was in bed (at 6.30pm) I went to bed. We both had a restless night again and then had to be up early this morning to get our train home. The wheelchair assistance at London Kings Cross was brilliant and the man who helped us even rang through to Doncaster to tell them to be ready for us when we arrived! So that was good. We had a reasonable journey home, Lew was much better on the return journey but is very very tired from his unsettled nights so we really cant contemplate travelling overnight with him at the present time. We'll have to see about EuroDisney as the date gets closer but its not looking optimistic. When we arrived home, we dropped off our suitcase and then went straight out for a walk round the lake to get some fresh air and some normality. What beautiful blue sky. Thank you to everyone who texted us wishing us luck for our appointment at GOSH. We hope you enjoy the many photographs.

5 comments:

Anonymous said...

I actually sat crying reading that, and for once im not going to type an essay size response, as words kinda escape me.... but thinking of you all, and lovely photos.
lawsey x

Lucy said...

Hugs kisses and cuddles for you all. Look forward to seeing you soon, I am thinking of you all the time.

Lucy xxxx

Anonymous said...

Sounds like you had fun while in London. You were near where i live! Thinking of you always.

sorry its not a long piece of writing today, got to go and do some bits and bobs.

Take Care
Sian XxxX

Anonymous said...

must have been frustrating for you to not have the doctor tell you what he actually thinks it is.london is VERY expensive.i went a few years ago for my birthday and am thinking of taking the kids to see a musical at some point but tia is so young and london travelling isnt really for buggies or anything with all the bus hopping.cant imagine how much the taxi cost u that day.love to lewis
debbie and the girls

Lucy said...

James I think those glasses would seriously detract from your whole family's quality of life.

However......I do have a photo of you in your teens which looks spookily like that one........and they are the real, actual specs you wore all the time.......

What's it worth not to post it on my blog?

Tee hee love you lots. Very nice to see some pics of Samuel as well as Lew - who looks so smiley I could eat him! Obviously not all at one sitting, cos he's quite big now.

Lol

L xxxxx

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!