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Thursday, February 15, 2007

Newspaper

Hello! Well Lewis was in the newspaper today (Doncaster FreePress) which was great! We hope our story was read by lots and lots of Doncaster people! It is great that the article included a mention for www.postpals.co.uk which is a very worthwhile charity - if you havent checked it out yet, then please do! If you want to donate to charity but want your money to go direct to a sick child, this is the way to do it! Your letters, emails, postcards or gifts go straight to the child you choose as a pal. Well we've had a busy few days since Monday when we all had an indian meal!! Tuesday we collected Lewis' new pushchair/wheelchair from the hospital. It is so great and he is so comfortable in it! Tuesday afternoon we went to musical minis which Lew enjoyed as usual! On Tuesday evening, after Lew was safely tucked up in bed, I went for a meal at the Cheswold with Marion, Lucy and Wendy. It was a delicious meal and after, we went to the cinema to see 'Notes on a Scandal' - very strange, but very very good film! Lew slept really well until he was woken by a horrid cough which upset him alot. Wednesday I was greeted with a beautiful bouquet of valentine flowers and 3 valentine cards! (one from James, one from Samuel and one from Lew!) We waited for Jayne (homecare) to come and then we went to DRI for Lewis' physio with Kath. It was the BEST physio session Lew has had for months and months! He had such a great time, and he even let Kath give him a cuddle which she has never been able to do before! Kath has lent us a huge wedge which we can use for Lew's physio at home as he needs 'percussion' and respiratory massage to clear his chest of saliva, etc, which gathers in his throat. Wednesday afternoon we went to see Jin Qui and Jane and Sahn at home and Jin Qui cooked the most gorgeous chinese meal! It was soooo scrumptious and she was very impressed that I could use chopsticks! Lew had some yoghurt, which he loved and also some chicken and sweetcorn soup which he also loved, but he could only have the tiniest amount due to the risk of aspiration. Lew enjoyed playing with Jane who was showing him pictures in her books and teaching us some chinese words - but I cant remember any!!! As Lew had enjoyed Jane's company so much, we took her with us to the cinema to meet the rest of the family who were all ready waiting at Vue to see 'Arthur and the Invisibles'. As There was only 1 seat next to the disabled seat for Lew in his chair, Jane sat with Aunty Wendy and Uncle Andrew to watch the film and made a huge impression on them as she has one me and Lew. She is 4 years old and she is absolutely gorgeous and so talkative and just lovely! No wonder Lew loves her! When we took her home, Samuel came too and Jin Qui made us a lovely cup of chinese tea. Then it was time to come home as Lewis was absolutely shattered! While we had been out, the postman had been and delivered a valentine card and a valentine heart (balloon) from postpals - THANK YOU POSTPALS!! Lewis loved his balloon and we have taken a photo which I will put on the blog soon. As it was valentines day, Wendy and Andrew agreed to babysit for Lew while James and I went out for a meal. We went to Goa in town and had the most scrumptious food, but just as we were finishing, Wendy rang and was quite worried. Lew had had several coughing/choking episodes, two reflexic anoxic seizures and was crying constantly. Wendy had been so worried, we found out later, that she had been tempted to call an ambulance. We zapped straight home - I think the Goa restaurant thought we were very rude (we did pay before we left!) because we just jumped up and got out as fast as we could!!! I went up to Lew and after about half an hour, he was settled again and was able to go back to sleep. But it did show James and I that going out in the evening together is just not an option. Although Wendy and Andrew are perfectly capable of looking after Lewis, were he not ill, with him being ill it is too huge a responsiblity for anybody as only James and I know the ins and outs of Lewis' condition and we have that instinct that tells us if he is REALLY ill (ambulance) or just a bit ill (possible hospital but wait and see). Lew's night was quite settled after his coughing and crying episode, and he had a nice lie in, chatting (making sounds) to himself in bed in the morning while I got a shower. This morning, James rang to say Lew was in the newspaper, so I drove to Asda to buy the freepress (well I bought 8 actually so I could give some to my family and friends who dont live in Doncaster). However ... I had put on a skirt (because of forthcoming waxing) and a pair of navy blue ankle socks and my bright red fluffy slippers ... so if you saw a mad woman in Asda today, it was me!!! With Lew!!! We are famous lol! Diane (homecare) came again. Lewis has taken a real shine to her. Some people he does bond instantly with (aside from children as Lew loves all children!). So far, these have been my dad (grandad skinny), my sister (Nicola), Katy from Bluebell Wood and now Diane (homecare). I think he recognises that she is calm and confident and that he is safe with her which is fantastic for me as I feel comfortable leaving Lew with Diane while I potter around the house doing ironing and such like. Well today, Diane came with me to Lizzie's (Pure Beauty) for my leg and bikini waxing - Lew has hydrotherapy coming up and I was not in a position to wear a swimming costume!!! It was great to see Lizzie and to have some time to myself, while Diane and Lew sat in Lizzie's lounge watching Cbeebies!!! Lew and I got home about 11.45am just in time for Frances from occupational health who was coming with the car seat rep. Lew is getting a new car seat specially made for disabled children. He found it so comfortable and it is much easier to get Lew in and out of it than his current, regular car seat. It should be with us in about a month. After Frances had gone, we lounged on the sofa for about an hour and then when all the family had arrived back from various places (men - golf, Wendy and children - swimming) we went to Sandall Park for a walk. It was freeeeezing! But Lew was very wrapped up and cosy! Lew loved watching the children playing on the swings and climbing frame, etc, in the play area. Wendy and I could not resist a trip to Dunelm (with Lew in tow!) - we love that shop! At home we did some physio with Lew (with his new wedge) and then Lew was soooo exhausted, Wendy and I put him to bed. Wendy and her family are emigrating to Australia on 1st April and she is going back home to Lymington tomorrow morning so it was really special for her to help to put Lew to bed tonight as we probably wont see her again for a long while (either when they come back for hols from Australia, or when we are in a position - both financially, and medically with Lewis' condition - to take a trip to Oz). We will miss them all so much. Lewis absolutely adores his cousins George and Anna, as does Samuel. George and Samuel have a very special bond, and are great friends. So now Lewis is fast asleep in bed and its time for me to get in the bath and have a relax before I get an early night! Lewis' birthday and party are on 28th February and I have asked people who we have invited to bring along a contribution to the buffet - Lew doesnt need any presents, but we are saving for sensory equipment but its far too expensive for people to buy as presents!!! People have been texting me or returning invitation slips about what they will bring for the buffet and it keeps making my mouth water ... yummmmmmm! Goodnight all and God Bless.

1 comment:

Anonymous said...

Heya

Yessss... Postpals is very worthwhile people, pleassssse help make ill children smile :).

wow..you have been busy.
Glad you've had quite a positive week though :)
Glad lew was comfortable in his new pushchair/wheelchair & glad lew loved musical minis.
Glad you hada good meal tues eve, its really important that you look after you, aswell as lew and your family.
Glad you all enjoyed the cinema too.
Haven't seen or heard of that film.

really glad the physio went so well :)& glad you had a good afternoon with your friends :)

Glad lew gets on so well with Diane too, children are very good at sensing things and like you said, as she is patient, confident & calm etc it will really reassure him :)

take care, and hope you have a good weekend and such like.

lawse :)

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!