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Tuesday, May 29, 2007

Feeling poorly

What a gorgeous smile!We think its Granny's birthday today so HAPPY BIRTHDAY GRANNY!
Lew isnt well today. He's not been sleeping very well for a few nights now, with a cough, and this afternoon he's really not himself at all. His eyes are very red, he has terrible dark circles around his eyes, one of them is slightly bloodshot, and he's lethargic and dozey and very miserable.
Hopefully he'll improve with (fingers crossed) a good night's sleep, but we'll let you know if anything changes, or if we have to go in to DRI.
So on Friday we went to visit Jane, Joseph and George. We had a looooooooong lie in so we didnt get round there until just after 12 and so after a quick play, it was lunch time! Lew loved seeing Joseph and it was great to see Joseph loving his baby brother George so much and making him smile. Jane and I had a lovely natter, while Joseph showed me and Lew lots of his cool toys! Joseph is so very very bright. He is only just 3 years old and he has an enormous vocabulary, an incredibly mature understanding and he is also very very thoughtful and kind. Oh and he's scrumptious too! (Just like his scrumptious brother George!).
On Saturday we had to be up very very early to drive to Twickenham to take Samuel to stay with Aunty Tania, Uncle Nathan and cousins Daisy and Millie (and the cats .. and the fish .. and the frogs!). My alarm went off at 6.45am ... now Lew had been in bed with me since the early hours, upset and coughing alot, so I turned off my alarm and thought ... 'I'll just have 10 minutes' .... then at 7.30am Lewis woke me up! As we were meant to be leaving at 7.30am, we were now running rather late! Anyway, by just after 8am we were on our way. We had an uneventful journey although as we got on to the M25, Lew started to get very upset and it was very lucky the traffic there wasnt too bad so we were able to get to Twick quite quickly.
We arrived at Tania's in the miserable pouring rain (just for a change - when does summer start?!) and Samuel was straight off with Daisy on to the computer!! It was lovely for Lew to see his Aunty Tania and Uncle Nathan and also Nanny Val who was visiting there too. Cousin Millie was very shy but we sorted that out later!!
We chatted a bit, had a drink and watched Samuel and Daisy on the PS2 guitar game thing which was very funny to watch!
We gave Lew a bath and got him all clean and tidy and then we left Samuel to the PS2/msn/xbox/Daisy and drove round to see Aunty Nicola and Evie. Grandad was also there. We had a scrumptious lunch and a lovely chat. Lew loved seeing Evie again and enjoyed watching her playing with the trains (she LOVES Thomas the Tank Engine) we had brought for her. After lunch, James had a sleep (all that driving) and we all went for a walk round Twickenham (it had stopped raining but was still dreary!).
Evie did a picture for Lew which she rolled up and presented to him tied with a blue ribbon!
Soon it was time to set off back to Tania's to get ready to drive home to Doncaster. We had a delicious and unexpected tea of fish and chips and mushy peas (home made!) from Tania, I had a nice chat with Millie and took some cool photos of her, and we evem managed to get a photo of Millie and Lew in the same place at the same time (!she was very shy!) and then it was time for us to drive home. And surprise surprise IT WAS RAINING AGAIN!!
I fell asleep in the back of the car with Lew while James drove. When we got in, we were all so shattered and went straight to bed pretty much.
On Sunday, Lew and I had a LIE IN! We got up at ... wait for it .... 1.30pm!!!! Wow! Granny and Grandad came for a quick visit and then we decided to go for a walk despite the miserable rain, but got 5 minutes round the lake and turned back ... far too miserable and cold - almost like winter! We saw Van for a few minutes then came home.
Cant remember what we did for the rest of Sunday but since it was raining and miserable miserable miserable, nothing too exciting I'm sure!
Bank holidays eh? Just dont know what to do with them! And rainy ones too! Well on Monday I had arranged to take Lew to the fair at Doncaster Racecourse. Because of the dreary weather, nobody really fancied it, but we braved the cold and the threatening rain and we actually managed to walk their and back without it raining .. HOORAY!
Lewis and I, Teresa and Luke, Olya and Illya and Natasha, and Munmun and Livia all walked to the funfair just in time for it to open at 2pm. While we were there, we met Karen and Craig, Paul, Stephen, Daniel and Heather. We all had a really great time, even though alot of the rides were closed (too wet) and the fair seemed alot smaller than in previous years.
Luke and Illya had a go at 'Hook a Duck'.
Lewis and I had a turn on one of the rides which was kind of exciting! The ride we went on is about the biggest and scariest fairground ride you'll get me on!
I could not resist the smell of the doughnuts... yummm and I incredibly selfishly ate the whole bag MYSELF!
Natasha slept through most of the fairground trip. Olya and Ilya, and Teresa and Luke enjoyed the bumper cars (are are they called dodgems?), and the boys really enjoyed the fun house!
Livia got some scrumptious candy floss.We bought Denise some candy floss as we know its her faaaaaaaaaaavourite food ever!
We walked back to the Dome and went into the Icebreakers Bar where there is a cool play area for the children and they also serve sandwiches and other bar food. While we were there, I booked tickets for Lewis and I to see the Chuckle Brothers on 9th June at the Dome whohoooooo! We love them! I used to love them when Samuel was young, and now I watch them with Lew and he enjoys them too as he loves all the falling over and running round in circles and 'to me, to you' lol! (http://www.thechucklebrothersontour.co.uk/).
Finally we left the bar (sounds like we were all sozzled but it was coffee all round except me, I had a shandy lovely!) and walked back home again ... and invited ourselves to Teresa's for a cup of tea! We bumped into Denise and family who had just come back from a walk to the Yorkshire Outlet. Denise's mum was visiting with her fiance so it was lovely to see her although we didnt get a chance to chat as it was all busy busy people all over the place!
Munmun, Livia, James, Lew and I kidnapped Maisie and Oliver and took them to play for a bit at Teresa's (I think Teresa must have thought BL**DY CHEEK!!). At Easter, Luke had won an easter egg at school, and Richard was in the kitchen breaking it up into smaller pieces ... I only saw what was left, but it must have been 2ft tall, it was so huge and the chocolate was so thick! So we had some choc yummmm!
Luke and Maisie played on a computer game, then Lew and James had a go!
Then James had a chat with Denise about his sword while Lewis played on the game!Luke showed us his super cool helicopter that makes lots of sounds, lights up, and even shoots you! Lew loved it!
Then it was time to go home, get ready for bed and sleep. Unfortunately, Lew had another bad night last night and ended up in bed with me again. We had probably 2 hours sleep between us so were both zombie-fied when it came time to get up for our appointment at DRI at 8.30am!
Lew has to have splints for his legs to try and help his feet to not fall flat - as if he is pointing his toes all the time from the ankle. So today he had to be plastered (!) to make the moulds which will eventually become his splints! It was very interesting to watch and lucky that I hadnt given Lew a bath before we went to the hospital as he certainly needed one when we came out!
When we came out of the hospital, I took Lew home for his bath, then we went to Denise's for lunch QUICHE and RASPBERRY CAKE .... its like .... HEAVEN! Then as everybody was falling asleep (Maisie and Oliver, Lew, Denise and me!) we came home and zonked on the sofa in front of the TV! We dont do it very often, but when Lew is poorly, we havent got much choice.
Well fingers crossed for a better night for Lew, and we do hope you like the photographs.
And the clouds have gone, the sky is blue and I've got some washing out, wahey! How sad to get excited by washing! Lew helped me to put some in the washing machine which I think he enjoyed as he used to do that before he was ill.
Oh and I havent got the exact details yet but there is going to be another Gentlemen's Evening in Doncaster to raise money for The Lewis Jeynes Fund in November this year - if you are interested, please do let us know.

PS CONGRATULATIONS to Olya on passing her driving test FIRST TIME!!!

And a quick hello to all our Postpals, to Caroline and Declan and to scrumptious Nathan who has been very poorly over the weekend, but hopefully is feeling better now.

Monday, May 28, 2007

Just a quick one

Just to say hello and I will be updating the website probably Tuesday or Wednesday - got lots and lots of fab photos to share - had a busy few days! In the meantime, why not play with the fish, check out the videos, or have a go at the disc drop game. A few things to keep you entertained until the next update! In a nutshell, Lew has had a very exciting bank holiday weekend and is now snoozing happily in his bed! Until next time xxxx PS here is the online version of when Lew was in the local newspaper this week http://www.doncastertoday.co.uk/viewarticle.aspx?sectionid=786&articleid=2895735

Thursday, May 24, 2007

Perfect Moments

Note: Lewis is in Freepress this week
What is a perfect moment? Is it a moment that you have strived for and achieved? Or is it a moment that just happens .. surprises you out of nowhere and touches the centre of your heart? If its the second option, then we have lots of them. Lewis is always giving us perfect moments. Moments where we feel so joyous, so full of love, absolutely bursting with happiness because he brings us so much. And how does he do this? He uses 17 marvellous muscles and he gives the most awesome smile and you cant help but smile too, not just a little smile, but a full on face splitting grin! If you havent experienced one of Lewis' smiles, you are missing out!
He smiles at people he loves who he hasnt seen for a while, he smiles at his friends when they arrive, he smiles at the sound of his daddy's voice, and he smiles at his big brother because he adores him! He smiles when people make him laugh. He loves slapstick - people falling over or doing silly dances, stuff like that. And he LOVES being 'whooshed'. In his wheelchair, with someone in front, stood a few feet away, we 'whoosh' Lewis towards them and he thinks its hysterical! In fact, sometimes he loves it so much that he almost laughs!
Now that is an awesome sound .... Lewis almost laughing. Rips at your heart, and brings tears to your eyes. Because he really is the happiest little man, he enjoys every moment of his life, and he enjoys the people around him. Its no wonder he has soooooo many friends ... especially young blonde women!!!
So anyway, we've been busy since the last blog entry.
Lewis having a cuddle with Daddy on Sunday morning.
On Sunday we spent some time in the garden in the beautiful sunshine! James and I went on the trampoline and Lewis sat in his giraffe chair to watch. He thought it was very very funny, especially when James bounced me so high I fell over and then I couldnt get up! The neighbours also thought it was funny to hear me screaming with laughter!
A bit later we set off for a walk around the lake, but got waylaid at the cul de sac and ended up popping in to play in the garden with Van, Nikhita and Jay. We were practising hand and head stands and generally being far too active for a Sunday afternoon!
Just before 4pm we went to Annabelle's 3rd birthday party at Bircotes Leisure Centre. James went off with Steve and Richard to do some DIY so Van, Nikhita and Jay came with Lew and I in our car. Samuel stayed at home in his crypt (the bedroom of darkness haha!).
We got to go on the special disabled person lift which I think Lew found quite cool.
There was lots 'playgym' equipment, and a huge bouncy castle. Lew had a go on the slide - he loves slides, we think he enjoys the sensation of moving. He enjoyed watching his friends playing on all the other equipment.
Lew enjoyed VERY MUCH (!!) having a cuddle with Olya and playing with Nikhita and her snake which was called Lewis!!!
All the children played pass the parcel (a boys group and a girls group!) and Lew joined in.
Lew had a fab time at Annabelle's party as did all the children so well done to Karen and Patrick for arranging it, and HAPPY BIRTHDAY again Annabelle from all of us!
On Monday we went to have a look at a nursery which our friend helps to run. Tiddlywinks is a pre-school group in a church hall setting. It is open 4 days a week, mornings only, and we went along to have a look with a view to possibly taking Lew there a couple of mornings a week. It was a lovely atmosphere and we had a wonderful morning, Lew met lots of new children, we did some activities, I did a puppet show (never again!) and we did some singing and instruments. The children had made strawberry angel delight, and Lew had a tiny taste. Marie (Bluebell Wood) came along with us and it was a very enjoyable morning. We got to meet Julie and Robin who are Lewis' friend Joseph's aunty and cousin! We hope to go along again for another visit in the next few weeks.
Later we popped into DRI to see Margot (DRI volunteer) who had a present for Lew. Margot does the Bluebell Wood Childrens Hospice Lottery (http://www.jacksjackpot.co.uk/) and she won a Little Jack teddy bear. She decided very generously to give this to Lewis and so we popped in to collect Lew's gift. It is the softest little bear and it now lives in the corner of Lew's bed next to his pillow. Thank you so much Margot.
On Tuesday we were meant to go to group at the hospital, but we were both sooooooooooooo tired! Lew had been up in the night and hence so had I, and we just wanted a lie in! So we had one! When we were feeling a bit more normal, we went round to visit with Denise, Oliver and Maisie, and went shopping to Netto and Matalan. They had some funny rubber wigs in Matalan which the children enjoyed trying on!
Afterwards, we went back to Denise's house for some delicious lunch (the BEST quiche in the whole universe) then we went to musical minis. We took one of Lewis' new friends with us to music group - Cole. Cole's mum Jackie contacted me by email via Lewis' website (I think - or PostPals or something) as they live just around the corner from us! As Jackie works shifts alot, Cole and his dad Mark are at home alone and dont really know what activities are available for young ones, so we took them along to music group and I think Cole had a really great time! Lewis certainly enjoyed himself, especially when we sang PEEK A BOO! We had a good chat with Alison who is doing the fashion show to raise funds for Lew so I will let you have more details about that soon.
After music we all came back to our garden and the children played on the trampoline.
After after that (busy day Tuesday!) we went to Frankie & Benny's (Lew and I) as it was Joseph's birthday on Tuesday HAPPY BIRTHDAY JOSEPH 3 years old now! and he was having his party there. We got to meet some of Joseph's family (we already know Jane and Gareth and Joseph's baby brother George, and we met Julie and Robin at Tiddlywinks) and Lewis got lots of kisses from George! Unfortunately, Lewis was ill on the way home (we had walked as its not far from our house), but he enjoyed being with Joseph to help him celebrate his special day!
So Wednesday - As Lewis had been poorly on Tuesday evening, I wanted him to get some extra sleep so I left him in bed until quite late while I did some stuff around the house. Jane (Homecare) arrived at 10.30am to get Lew up and bathed, and then they went out for a walk round the lake while I got showered and stuff. We havent had chance to walk round the lake properly for a couple of weeks now so it was lovely for Lew to be able to do this with Jane.
Just after midday we went to DRI for Lew's last (boo hoo) hydrotherapy. I had forgotten my costume so couldnt go in which I was sad about as its such a special time for Lew and I enjoy sharing it with him, but it meant I had plenty of opportunities to take some great photos of him in the water! He was trying very hard to kick and splash - I must arrange to take him swimming until we can get some more hydro sessions booked in.
After hydro, we popped to the Yorkshire Outlet for a smoothie then popped in to see Denise, Oliver and Maisie (I think they are sick of us this week!!!!).
At 5pm we had to take Tabitha (cat) to the vet as she had blood in her wee. Turns out she has severe cystitis so she had an injection and has some tablets to start tomorrow to try and clear it up. By the time we got back from the vets, Lew was asleep so I put him straight in bed and so as not to disturb him until he'd settled properly, I decided to do his milk and medicines in about half an hour. WELL ... when I went up to do them, he'd pulled his tube out completely!! Cheeky monkey! I didnt want to wake him as he was sooooo sound asleep so I left him to sleep with no tube (he looked so cute with a bare face) and when he woke at 5am this morning, I brought him down to my bed to do the necessary.
Now ordinarily, Lewis hates having his tube passed, and he becomes very distressed as soon as I tell him what I'm going to do. This time he just continued to look at me, so I thought maybe he hasnt understood, so I showed him the tube and he didnt get upset, so I started to pass the tube and he still didnt get upset ... all that happened was that he had to gag a bit as the tube passed down his gullet (is that right?) and then he was fine. It was a very strange moment because it was the first time he has not had a reflex anoxic seizure when having his tube passed, and not only that, but he didnt even cry or get upset. I spoke to Katie and Bluebell Wood about it and she said its probably because he feels safer now that I am passing the tube and he is getting used to the sensation. Amazing.
So that means Lew has been on his feed all day today (usually he's on it at night) so we've spent most of the day indoors. While Lew sat watching TV (a rare treat) I did some tidying (oh forgot to mention I did loads of ironing last night as well!) and then Denise, Oliver and Maisie came over to play for a little while (with some raspberry cream cake ... yummmmmmmmmmm).
We're very lucky to have such very good friends, and Denise has helped me through alot, especially just recently. And Lew just adores Oli and Maisie! Denise does have a husband (whats his name again? just kidding Jon!) but like James and alot of other husbands, he has to go out to work. We had a great time playing on the trampoline and I'm pretty sure Lewis got lots of kisses off Denise!! He is such a babe magnet!
I joined this website called Freecycle where you can basically give away stuff you dont want anymore. You can of course also ask for stuff you do want, for free, which is how I met a new friend today. A lady had advertised on Freecycle for some boys clothes aged 18 months and a baby grobag. Well I had some clothes of Lew's and also a grobag, so I replied to the email, and Diane came to collect the stuff. She got to meet Lewis although I'm afraid he was (1) tired and (2) captivated by the TV and (3) excited to have his friend Tobey visiting, so Diane didnt get a smile, but I hope she will keep in touch as I will definitely have some more clothes ready for a new home soon.
Just after 2pm Lesley and Tobey arrived for a visit. Lew was soooo excited! He adores Tobey, and cant take his eyes off him! I think because they've been close friends for a good while - we met at speech and language group at DRI - that he has a special place in Lew's heart. We had a chat and then Samuel came in from school so we all got in the car to drive to DRI for Samuel's haircut! Why have a haircut at DRI you may wonder? Well Lew has had his haircut there 3 times now by the same girl (blonde, young, pretty!) and so I thought Samuel might benefit from the same treatment! So we went along and Samuel had his VERY long hair cut rather short!!! It looks fantastic so thankyou again hairdresser lady (arrghh cant remember your name!). We came home again and Tobey and I had a go on the trampoline while we waited for Lesley's husband Kevin to come and pick them up. Even Tobey's dad Kevin had a go on the trampoline but I think it wore him out as he's been working nights!
So a very busy few days! Exhausting in fact! Oh and by the way, its going to rain tomorrow!

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!