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.