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Thursday, February 08, 2007

Snoring, snowing, snoozing!

Hello! Well we have been sooooooo busy! First of all though, snoring. Last night Lewis was having such difficulty breathing (build up of secretions in upper respiratory area, catarrh, blocked up nose) that he was SNORING!!!! Now it really is true - like father like son haha! Anyway, his breathing was so awful to listen to, I was so worried, so I had to go up and sleep with him, or not sleep ... haha! As for snow ... well it finally did snow here in Doncaster, but it WONT SETTLE so we are gutted! No snowmen for us! Booo hooooo! Maybe tomorrow? And snoozing ... well our new homecare lady came on Wednesday at 10.20am and at 10.37am she put a note through the door as she thought we weren't in ... we were SNOOZING!!! Luckily, we caught her before she drove off, phew! So what have we been up to this week? Well did I tell you about the chinese church? On Sunday Lewis and I went to the chinese church with Marion, to meet up with Jin Qui and her daughter Xeng/Jeng (not sure of spelling) and to see the guest speaker all the way from Hong Kong who gave a talk and demonstrations on chinese reflexology. It was so great! The chinese church provided us with a translator so we could understand the service, and then another translator was provided for the talk by the reflexologist expert! We were made so welcome by everybody, it was so very very wonderful to feel so welcome and so thank you to everyone who was at the Chinese Church on Sunday and at the Chinese School (at Danum Lower!) for the talk. It was lovely to see Jin and her family and we hope that the reflexology that we were shown will benefit our children. Jin's baby girl was fine until 6 months old, but sadly she got a virus, and is now severely brain damaged, partially sighted (probably blind) and has a tube just like Lewis' for feeding. She is now 9 months old. We originally met Jin in ward 31 when we both Xeng/Jeng and Lewis were admitted. We then saw each other again at baby massage at Stirling Street and have struck up a friendship. So Sunday, we came back from the Chinese Church/Chinese School at around 3pm and Ian, Denise, Jon, Maisie and Oliver were round for a late lunch/early tea. Denise had her massage and was super chilled! I had mine when we got back and it was just BLISS!!! I had my back done, then my head and face and then my feet .. lovely! I hadnt cut my toenails (claws) so poor Ian must have got some injuries!! But I've done them now and Jodie has very kindly painted them so they are very posh!!! Monday morning we went to group at DRI and Lew had a lovely time. I went to the dining room with Daniel's mum and dad and we had a nice chat. Afterwards, we went to see Helen and Ernie and had a couple of lovely cups of tea and some very good company! I could have sat there all afternoon and Lew thought so too because he fell asleep on my lap! On Tuesday we went to group .... eventually! The battery on the car was dead arrgghhhhhh! So I had to ring Ros/Tony to come and please please help me! In the meantime, Denise popped down and James told us over the phone how to connect the jump leads ... when Tony and Ros arrived, Tony said YOU SHOULD NEVER PUT THE LEADS ON LIKE THAT!! Turns out that the way we had done it, could have caused £800 of damage to Denise's car!!!! Phew it didnt do it on this occasion, but it gave us wobbly legs!!! At group, the numbers were down as Chanel and Toby/Todd were ill. Still, it was good although Lew was very very clingy! We went to Musical Minis in the afternoon and it was, as usual, great fun! James was away in London overnight at the Savoy for the SOLACE annual dinner. This year they agreed to raise some money for charity for Lewis, and the amazing amount of £4,211 was raised!!!! This will be split between Bluebell Wood and Ward 31 at Doncaster Royal Infirmary Childrens Hospital (see below for links to websites). We are hoping to arrange some publicity for handing over the (giant!) cheques and we are also going to set up a fund for Lewis to try and raise some money for sensory equipment, etc for Lewis. On Wednesday we had our first proper visit from Diane, one of our Homecare ladies. Very surprisingly given Lewis' track record with anyone but James and I, he really took to her and she helped to give him a bath, got him dressed, and pushed him round Tesco while I wandered round the aisles feeling like a spare wheel! But it was great for Lew and for me as we got some time away from each other and a bit of variety! On the way back from Tesco, I decided to go for a drive around rather than go straight home and so we went on a mystery tour! We went through Tickhill, and came to Austerfield and so decided to see if Lesley and Tobey were in and up for a visit. Lesley has had laryngitis, but she was feeling quite a bit better (although not 100% but well enough to paint the front door!!!). Lewis was SO EXCITED to see Tobey! He really is one of Lewis' favourite friends! After a lovely cup of tea and a chat with Lesley, we went to collect Jodie who came back to stay overnight. After Lewis was in bed, we had a lovely chinese (thank you James!) and then Jodie painted my toes (total girlie pampering!) while we watched Waking the Dead. And then Lewis had his restless night (where today's blog started! - snoring!) and so we are both pretty tired today! This morning it started snowing (whoooohoooo!). I had received texts from Angela in Wales with photographs of all the snow!!!! I was so jealous, but then we got some! But it hasnt settled, booo hooo! We popped down to see Denise, Maisie and Oliver (with some eggs!) and had a cuppa and then came back home to meet Diane (Homecare). Diane and Lew watched TV and sang songs and chatted (Diane chatted, Lew listened!) while I ... wait for it ... WENT IN THE GYM!!!! I did half an hour and sweated ALOT!!! But felt better for it! And Lew was absolutely fine on his own with Diane which was just so great! After Diane had gone, we popped to Asda to try and get Samuel some school trousers and school games shorts ... absolutely useless .. nothing! Then we drove to B&Q to buy a light bulb for the mathmos lava lamp (such excitement!) then we went to Tesco to see if they sold stuff for Samuel. We managed to get black games shorts, but black trousers for boys? Nope! Grey trousers - billions of them. Black girls trousers - billions of them. Black boys trousers? NOPE! Oh well! Then we came home again to meet Philippa, our new social worker. She is a lovely lady and so kind and friendly and bubbly! She let us know we have been awarded 14 hours a week direct payments so that is great - just got to find someone to do them now!!! Some serious conversations coming up me thinks!!! Lew has been feeling a bit off colour the past couple of days, and this afternoon he really seemed to go down hill quite fast. He isnt REALLY ill, like when we had to go into hospital, but he's not really well, so we'll be taking it easy the next few days and see how he goes. Fingers crossed he will be able to throw it off. Oh some good news, Lew was weighed at group on Monday - he was 13.9kg -back to his weight before he got ill in December ... hooray!!! Now tomorrow is a VERY special day! It is Evie's birthday and she will be 2 years old tomorrow! So HAPPY BIRTHDAY tomorrow Evie and see you on 24th February to go and see Thomas the Tank Engine at York! Oh and Laura - thank you so much for our letters and cards, and hope your Nan is comfortable and that you are coping ok. Thank you so much Toby (and Lesley) for the lovely sea scape candles, and for the fish and octopus and things for the bath - Lew enjoyed playing with them! And Helen Brierley - not sure if you will get chance to look at our blog, but if you do - thank you VERY MUCH for Lewis' orange twirly thing and also for his cassettes. We listened to Postman Pat takes a message the other night before bed! And Jodie .. thank you so much for Lewis' cassette as well! And YOLANDA you naughty girl! Thank you so much for my BEAUTIFUL BEAUTIFUL vase of flowers, they are stunning and I love them so much! We miss you and the children - we must sort out something soon! Thankyou Sian for your emails, its always nice to get emails, even if we dont get chance to look at them very often! Dear Brenda, thank you for your email, which I have looked at and read several times, but have not yet got round to replying to!!! But please do email us again if you get chance. I might not get chance to reply very often, but we do really appreciate receiving them! Thank you to Denise for being such a supportive friend these last few days - you've put up with my miserable face alot this week - been having a bad few days, getting stressed and low, and you've had to put up with it I'm afraid!!! And finally, thank you Amanda for such a lovely chat this evening. It was so interesting and enlightening to learn about the fire ceremony and it means so much to us that we are in your thoughts and prayers.

1 comment:

Lawse x said...

Heeey!:)

Yay.... Woop for the update, i'd missed reading them.

Bless lewis and his snoring, aaw!

And your so lucky getting snow! i wanted to build a snowman but had No chance given the silly amount we got!!

Sounds like you have been very busy, but was an interesting read :)

And don't mention car problems, argh, we've had them too!!.. glad you got to the group on tues in the end tho!

Glad lewis enjoyed musicial minis... I love those kinda things,so good to watching the childrens reacitons and all those happy faces etc :D When i finally get my own childcare setting off the ground like a decade down the line, its gunna be very music and movement based!..ideas are already brewing haha!

Wow @ the amount of money raised for such worthwhile causes - expect an email about fundraising too! i've had lotsa time on my hands yesterday and today so i've come up with some ideas hehe!

Glad the visit from Diane went well on wednesday too :)
and glad Lew enjoyed seeing Tobey :)
anddddd glad you hada good Chinesse.

I think i need a theasurus (however u spell it!), to find out other words to use instead of glad, haha..i see a patturn forming!!

Tis really good that you got a chance to go to the gym and have some you time too :)

Hope Lewis feels a bit more like himself tomorrow..and over the coming days, poor little chap he does seem to go through it.

and brill news that hes back to his old/normal weight, ace :)

andd, not like i know her or anything, BUT,
HAPPY BIRTHDAY TO EVIE for tomorrow too..... Have a great birthday :)



babbley essay over for now,
but take care :)

lawsey x

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!