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Tuesday, February 27, 2007

Massage

Lewis absolutely loves his baby massage and his traditional chinese massage (accupressure and reflexology). Well he doesnt love the accupressure so much because its stimulating parts of him that sometimes are a bit sore (which shows he needs it) but he feels better afterwards! And I love massage too!!! Recently we went to an event at The Dome and I had the most awesome Indian head massage - totally amazing! And through making a friend at the hospital (one of Lew's specialists), I was introduced to another friend who is training to be a professional masseur and is clocking up his hours for his training!! Of course having a friend who gives very reasonably priced massages (!!) makes one very popular and Ian has been kept very busy!! So now I am having to try and squeeze in a slot for me!!! Back to our daily life! Lewis has had a couple of very good nights sleep (hence have I!) and (like me!) the 'overdose' of sleep has made him a bit grouchy! Mad isnt it! We get ratty because we are tired, and then we get grumpy because we've had too much sleep!!! So yesterday I actually had to wake him up to get ready to go to playgroup at the hospital (and yes I CRINGE everytime I remember that I said Doncarrrrster hospital on the TV!). We got ready in super quick time, loaded up the car and drove to the hospital and HOORAY there were lots of parking spaces! We went inside, and Lewis met his very good friends, the hospital volunteers who sit at the desk just inside the gate 4 entrance. I have to tell you, they are so welcoming and happy and kind and cheerful - its great! And ... I was told yesterday that one of the volunteers (I havent met her yet) has been volunteering for 30+ years and is now in her 80s! And how humble is this? They are being taken out on Friday by the hospital Trust for lunch to say thank you for their volunteering and they said 'why do we need thanking? we do this because we enjoy it' - they do deserve thanking because they are wonderful! Anyway, we had a chat with them, and they had seen Lew on TV which was great and of course Lewis adores them so they always get lots and lots of smiles from him and some eyelash batting! And one of the ladies had got him a little cuddly yellow duck - thank you so much!! But we left it at group yesterday so must remember to collect it today! Well, one of the ladies has relatives who live in London and she said that when she heard me say 'Doncaarrrrrrster' (cringe!) on the TV, she knew I wasnt from up here! So, turns out her relatives live in Hampton which is where I used to live!!!! How freaky is that! So we had a nice chat about the area, and of course my sister Nicola who is visiting with Evie still lives down that way so it was a very interesting conversation! We met Marie, and Lew was pleased to see her as well, and she was looking very slim and trendy! We went round to group and Evie started to play but Lew was not happy and got upset (too much sleep you see!). Anyway, he calmed down after a little while, and Nicola and I went up to visit Jin Qui who is still in Ward 31 with Sahn (been a week now). Sahn is looking much much better, but Jane was also there as she had a high temperature, but she was still the same Jane - chatty and bubbly and smiley, and absolutely gorgeous! Poor Jill from group had to come and find us though - not because of Lewis (!) but because Evie had realised mummy wasnt there and was very upset! So Evie enjoyed playing with Jane while Nicola and I chatted to Jin Qui. Jin Qui has found a clinic in China that has a very high success rate for children with damaged brains, and is very keen to take Sahn, but her brother (who is a doctor in China) has said that Sahn is too young for the journey. Its a very difficult time for Jin Qui because she cannot bear to see Sahn as she is now, knowing that there is nothing she can do. I know how she feels - if we dont have any luck at Great Ormond Street on 30th April, then we will have to start looking overseas - we have had plenty of suggestions from US (Kentucky - from Tracie), China (Beijing - from Chinese Church Daniel and his wife), Russia/Ukraine (from Olga) and also Cyprus (again Olga). It seems there are so many superb hospitals and clinics for children with neurological conditions or injuries, all over the world, but at the moment we are putting our faith in GOSH and Professor Surtees. At around 11.45am we all went back down to group (Jin Qui, Sahn and Jane came too) and Lewis had been playing with sand - he had the sahara in his chair lol! Rachel and Jill had a lovely surprise for Lewis and the other children (Daniel and Eden) and had got a little chocolate cake and put 3 candles in it! Everybody sang Happy Birthday to Lew and Rachel helped him blow out the candles. Sadly Lew couldnt have any cake, but we gave him a taste by rubbing a bit of the chocolate on his lips (which dribbled out). It was wonderful for Lewis to have this. Rachel and Jill really are the best - it is 100% clear they adore the children they work with. We drove home again and Lesley, Kevin and Tobey had arrived for a cuppa. Evie went up for her nap while we had a chat and Lewis enjoyed seeing Tobey. Unfortunately (!) Evie decided she didnt want a nap under any circumstances so Nicola brought her back down again! So Evie and Tobey had a great time entertaining Lewis!!! Jodie popped in as well - she was off school because she has damaged her ear drum and so couldnt hear, and I had to take her back home again for 3.30pm as she had a doctors appointment - Jodie remember - no cotton buds in your ears!!! Lesley and Kevin and Tobey had to leave as well at 3pm as they had to be home to get Callum from school, so Nicola stayed home with Evie and Lewis while I dropped off Jodie and then popped to Asda for stuff for tea! Lew was soooo tired when I got back, I sat him on my lap and he had a little nap which unfortunately turned into a seizure but it lasted only 4 minutes so I logged it on his sheet and after it had finished he was fine. When James came home, he gave Lew a bath and Evie helped!!! Then it was time for bed for both of them as they had both had a very busy day! Thank you to those people who telephoned into Calendar after the report on Friday about Lewis' condition. Shirelle - Lewis does not have battens disease (been tested for this late last year), but it was definitely on the cards for a while and was a very very difficult time for us and for anyone who has lost a child to battens disease, my heart goes out to you, I can only imagine (as I have many times imagined) how this loss has affected you. It was also suggested that Lewis may have pyridoxine independent epilepsy - Mrs Russell we will mention this to our neurologist, thank you for the suggestion.

3 comments:

Lawse x said...

Just popped online quickly to check your blog

HAPPY BDAY LEWIS for 2morro :) - have a fantastic day :D

thinking of u all

lawsey :) x

cheryl said...

Happy Birthday to Lewis for tommorow. Hope he has a fantastic time. Tony already has a couple of donations towards Lewis`s fund from his chiropody patients as he has mentioned it to them.

All the best for tommorrow

cheryl, Tony, Tal and Brad xxx

Smnth & Co said...

Oh Cheryl that is so lovely! You must pop over with Brad to see Lewis.

You are very welcome to bring him over this afternoon if he/you fancy it. We are having a puppet show at our house and food 4.30pm to 6.30pm.

I have asked people to bring a food contribution, but no presents as (as you all know!) we are saving for sensory equipment for Lew.

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!