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Monday, February 19, 2007

Sooooooooo tired!

Hello, well Lewis had quite a bad night, neither of us got very much sleep. He was coughing alot, and his antibiotics have affected his tummy (stinky nappies!) and dealing with that in the middle of the night is not fun!! We did go to group at DRI, after we had a lovely chat with the volunteer ladies at the front desk at DRI main entrance who Lewis loves to make eyes at even though he cannot blow kisses at then anymore. We met Marie (Bluebell Wood) and went along to the group. Lewis enjoyed singing, making a picture and a picture frame, and his favourite favourite part of group - the touch screen computer! We are hoping to be able to buy Lewis one of these for his new room when we have saved enough money. Parents are encouraged (what a nice word - Rachel and Jill do you agree that you encourage?! lol) to leave the children at the Monday group so I went for a walk with Daniel's mum and dad, Karen and Craig, and Daniel's sister Heather. Daniel did so well today - he has a walking frame, but today he was walking on his own! He was wobbly, but his centre of balance was good and Kath (physio) was happy for him to keep trying! Well done Daniel! Chanel (who goes to Tuesday group) is in hospital this week in Sheffield - big hugs Chanel, we miss you, and hope you are feeling better very soon. After group, we said goodbye to Marie and we drove to see Granny and Grandad (Maz and Col) for a couple of hours. Lew watched some Cbeebies and then fell asleep in his chair! At 3pm I had to disturb him as we had been invited to Jin Qui and her family's Chinese New Year celebration meal. When we arrived, there was a table completely covered with dishes ready to be cooked and another table set out for everyone to sit and enjoy the food. There was gorgeous fish, tofu, prawns, cockles (I think), mussels, whelks (I think), lots of vegetables and then some gorgeous sweet fruits which were like miniature lychees and are called 'Dragon Eyes'. Jin Qui was very keen for Samuel to come, so James dropped off George and Samuel and they also enjoyed the Chinese feast. I was very impressed with them both - they made a keen effort to use chopsticks and to try most of the food. About 5pm, Jin Qui was very worried about Sahn as she was not responsive and was having trouble breathing and had discharge from her nose which was a bad colour. So I took Jin Qui and Sahn to the hospital (DRI assessment unit) and after seeing the doctor, Sahn is to stay in tonight. She was very poorly and I was very upset to see her like that and not to be able to help. I hope you will all pray for her tonight and for Jin Qui to continue to have the strength to care for her gorgeous little girl. Lew came with me to the hospital (to see all his friends!) as James had plans to go out this evening to a Gentlemen's Evening so he collected George and Samuel from Jin Qui's house when I went to the hospital. I took some very cute photos of Lewis today - Granny bought him some long socks - they come up to his knees (well almost over his knees!) and unfortunately he had an accident of the nappy kind at Granny's house so he had no trousers on, so I took some pics of him with his cute little knees and his long socks! I will put them on the blog tomorrow. Lewis fell asleep in his chair again (!) at the hospital which is not surprising since he had an unsettled night, and it was also past his bedtime when we left, but I wanted to make sure Sahn was going to be admitted overnight before I left Jin Qui. When we got home, I took Lew straight up to his room and got him ready for bed and I could tell he was definitely glad to be in bed!! I missed a birthday yesterday - HAPPY BIRTHDAY JONATHAN 14 now!!!! I hope you had a lovely day and I hope I can get across to see you all soon as I am sure Lewis is missing Alfie and Spencer (chihuahuas) and Hollie (border collie)! Tomorrow, we have group in the morning (IF we can possibly get out of bed before midday!) and then in the afternoon we have musical minis. Jin Qui, Sahn and Jane were coming after for pancakes - YES ITS PANCAKE DAY TOMORROW! - but with Sahn being in hospital now, I think that will be cancelled, but I will see if I can go and collect Jane and bring her as she has been so excited about coming to our house to visit and she loved playing with Samuel and George today. Whenever she talks to Lewis, he always has the biggest smile! This evening at the hospital, Jin Qui was talking to him while she massaged his hands, and he gave her the biggest smiles and was trying to talk to her! It was so wonderful to see! Today in the post Lewis received 3 postpal items. A letter from America, A birthday card, and a parcel. The parcel is a bday pressie I think so we will save this and the bday card until next week (cant believe its Lewis' 3rd birthday next week!) but I will open the US letter for him tomorrow as we havent had chance this evening. But for those who have sent these 3 items to us that arrived today, I hope you read this blog so that I can tell you how lovely it is to receive letters and cards and of course gifts in the post and how much Lewis enjoys 'helping' to open envelopes and packages! I just want to say hello to some people who have been neglected recently. We may have been quiet (busy busy busy) but you are always in our thoughts: Yolanda, Stephen, Naomi, Joshua and Joel; Angela, Ashley and Hannah; Lesley and Kevin, Liam, Callum and Tobey; Annmarie, Savannah and Shannon. Far away you may be, but we still love and miss you all! And Laura - you are totally the best and I am looking forward to all your updates!

1 comment:

Lawse x said...

Hey!

Aaaaw, poor Lew (and you) not having a very good night :(
Sorry to hear that.

Glad Lewis enjoyed the group :)
Bless him having fun.. i can't wait to meet him!!

Aaaw bless Daniel..yay
*Claps* :)

Aaaw poor Chanel :( all these poorly children :(
Hope you have a speedy recovery chanel :)

Aaaw poor Sahn :( ...hopefully she will have a speedy recovery too :)

Aaaw, i look forward to seeing the cute pix, long socks are so cool hehe, bless him :)

Oooo gosh yea, pancakes 2morro,
thanks for that or i'd of forgot lol

Aaw, hope Jane can go to yours for pancakes tomorrow :)
and hope you all have a good day :)

Take care, and er happy early pancake day lol...!!

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!