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Saturday, December 30, 2006

Mini update from sister Nicola

Hello to anyone reading this. My sister, Samantha, has asked me to post a quick update for you as she is otherwise occupied at the mo. They are again back in hospital with Lewis as he has been poorly over Christmas and also has a chest infection. He is on antibiotics which should clear the chest infection up and he is being looked after by everyone there so hopefully he wont be in for too long. Once he is out and things a bit more settled I am sure Samantha will do you a more detailed post. Lots of love, hugs and kisses for Lewis and his family xxxx

Thursday, December 21, 2006

Escape from Sheffcatraz!!!

We escaped! It was a close one, but we begged pleeeeeeeeeeeeeeeeeeeeeeeeeease let us go home and so they have let us come home with lots of medicine! You see, Lewis had his 3rd MRI yesterday at Sheffield and he didnt come round from the anaesthetic very well. He needed oxygen for 30 minutes and had some green stuff coming up from his lungs ... hmmmm!! As a result, we had to stay in last night. Lew has now been allowed home (hooray!) with antibiotics for a chest infection and antibiotic eye drops for an eye infection! He was fine yesterday morning when we went in for his MRI lol! We wont get the results from the MRI for at least a couple of weeks. So hopefully we can RELAX now until 2007! Lew is now losing any abilities in his right hand as well as his left hand which is very worrying. He is also having real problems sleeping as his seizures/twitches are getting much stronger and keep him awake. He is soooo tired love him, he has bags under his eyes, but still he manages to flirt and blow kisses and smile at the ladies!!! He enjoyed making eyes and blowing kisses at two other patients in the ward this morning before we left. Well we are back home now and we are having a rest before Lew's giraffe chair arrives at 1pm hooray! We hope it will give him the support he needs so that he can hopefully be a bit more independent (ie. not have to sit on our laps all the time). The chair is a Jenx Giraffe (do a search on the web to find a pic). Lew has sadly missed nursery this week due to hospital but I hope to get him in for a couple of hours tomorrow so he can see all his friends. Sooooooooooooooooo tired, we are!

Monday, December 18, 2006

Stress stress more stress

Just when we thought it was safe to relax a bit before Christmas ... Lew has been booked in for an MRI on Wednesday at midday (they rang us today). So we'll be at Sheffield tomorrow for Lew's appointment with Dr Sharrard (metabolist) and then back again on Wednesday for an MRI which will involve a general anaesthetic again which is horrid, but these things are necessary, albeit horrid. So I feel all on edge again, all wound up. So what have we been up to today? We went for Samuel's haircutting with Jo this morning at Cannons Retreat. Jo did the most amazing job (again) and Samuel lurvs his new hair style! Then we went across to see Roz and discovered her in total chaos as she was having problems (understatement) with her new kitchen ... anyway its kind of getting sorted and the kitchen should be in and ready for use in time for christmas lunch haha! I am sooooo tired lately, not sure why. Lew received two Christmas cards today from post pal pals which was really lovely and has spurred me into action to send each post pal a christmas card from Lew. Problem one is I dont have enough christmas cards (solution: buy some more quick!). Problem two is I dont have any stamps. Solution ... BUY SOME lol! Problems solved! So I'll be doing that tomorrow morning before we go to hospital for our 2pm appointment. As for wheelchair services, unfortunately we will have to miss our appointment tomorrow afternoon at 1.30pm (physics rules that we cannot have Lewis in Doncaster and Sheffield at the same time haha!) so we are hoping to get an appointment very early in the new year and not have to wait until 20th February. Fingers crossed! Anyway, as I'm so tired, I'm off for a bath and bed early! Bye for now x

Sunday, December 17, 2006

Moving (purely in a spiritual sense)

Hello everybodies! Well what a very tiring and busy day! Lew had such a good sleep last night, not much twitching at all, perhaps the keppra is starting to work. Also, Lew is starting to verbalise again - he sounds like a new baby who is just finding its voice - gurgles and sounds as he tries out moving his mouth around. Its wonderful, it feels like he's 'starting over' if that makes sense. Well, we woke at 9.15am and so it was a mad panic to be ready to get to church on time! I got Lew and I dressed, left a note for Samuel who was still zonked in bed (!) and we managed to set off around 9.50am. I was incredibly impressed that I managed to find Bottesford Baptist Church again so quickly, its only our second visit!! And we arrived at around 10.15am, in plenty of time for the 10.30am start! Yolanda, Stephen, Naomi, Joshua and Joel arrived not long after and we went in for the service. It was so great, we sang christmas carols, had some lovely readings, and it is such a totally awesome atmosphere there, I was moved in many different ways. Being there gave me the strength to look inside myself which was scary; I felt so very uplifted and greatly moved by the love and affection and hope I felt in the room. The pastor is the probably the most wonderful man I have ever met, he is so happy and confident and hopeful and so full of joy and belief and faith and .. well he's just great. Thank goodness he's on the side of the goodies, thats all I can say! Lew loved the story of Harvey Slumfenburger's Christmas present, complete with actions, as did all the children, particularly Joel I am sure! We had a wonderful lunch with Yolanda and Stephen and children (and arrgghhhh cant remember his name .. David?) after the service - everybody had brought along some food and we had a wonderful buffet! Lew enjoyed making eyes and blowing kisses at the ladies, especially Yolanda!! Watch out Stephen! Now I have to do a special mention for a very special young lady who will be 10 years old on Monday ... (double figures - gosh her mom must be ANCIENT!!). Naomi will be 10 tomorrow so we hope you have the best day Naomi! And Joshua, have a great school christmas party! Synjj (stephen, yolanda, naomi, joshua, joel!) also gave us some lovely christmas gifts and a card (love the NTM calendar, thank you so much!) and also some cards from their friends and colleagues at New Tribes Mission in Grimsby. We were particularly touched by the card from Samuel which also had a letter in it to Lewis. I am hoping to write personal thank yous to each of them very soon, especially to Samuel who is 10 years old and who's parents must be INCREDIBLY proud of him! The drive home was very pleasant - multimap took us the pleasant residential route, rather than being stuck on motorway most of the journey - and I did quite well reversing my directions so that left was right and right was left ... hmmmm ! When we arrived home, James took Lewis to see the new football stadium (they had an open day) and I sorted out all my photographs on the laptop as there are so many that were junk and needed deleting or filing. So I've now managed to put together a CD for Dr Mordekar (Lew's neurologist) so that next time he 'presents' Lewis to his colleagues at a conference, he can have some photographic and video evidence to back it up! I think the shock of seeing the changes in Lewis in the past 8 months gives everybody who sees it a jolt. Let's hope someone out there has a miracle cure for our little boy! But in the meantime, thank you to all who have held Lewis in their prayers and for those who maybe dont pray, but still hold Lewis close to them and wish and hope for some good news for us all. So Leona won X-Factor ... that girl is going to be soooo huge, she is amazing and I am so glad she has won. And Strictly Come Dancing .. now I thought that was between Emma and Mark. I forgot about Matt! So Emma is out (cant believe it!!! as I thought she would win) but Mark surely will win as he is truly a natural!!! So how many days now until Christmas Day? 17th, but thats today so it doesnt count! 18th, 19th, 20th, 21st, 22nd, 23rd, 24th - 7 days!! Cos you dont count Christmas Day!!! 7 days ... sounds like The Ring haha! You know the problem with this blog thing is forgetting stuff. And if you forget stuff, its bound to upset someone, so I have to wrack my brains to think of anything I might have forgotten! And I have forgotten two very important things! This last week, Lewis has received 2 packages in the post! The first was from Aunty Tania, Uncle Nathan, Daisy and Millie and it was some christmas presents which have gone under the tree! The second was a huge package from Reuben and Louis. Reuben is a fellow postpal and he and his brother sent through for Lewis a huge box of brightly wrapped christmas presents for Lew to have on Christmas Day! The box was a gift in itself - it was covered in fabulous stickers which we have kept as Lew LURVS stickers! Inside were lots of pressies, one of which was losing its wrapping so Lewis opened this one - a gorgeous cuddly giraffe. As Lew's favourite film at present is Madagascar, we have named he giraffe Melman and he comes everywhere with us!! He did miss church today but he sat in the car! If you havent already, please do check out the link for postpals (see useful links below) and please do think about emailing a pal, sending a postcard or a letter, or a gift. It means so very much to the children on the site, and to their families, to know that someone somewhere who may not know your child personally thinks enough of them that they would spend some time writing or choosing a gift - I know because having received Lewis' gifts and letters from Reuben and Louis, well it was just so wonderful, and we hope to return the happiness very soon, especially as it is Reuben's birthday on Saturday! Tomorrow Lewis' nursery are having their annual nativity so I will be taking Lewis along to sing with his friends! I will hope to post some photos tomorrow evening! So to coin a phrase .... merry christmas to all and to all a good night (although I think I'm supposed to say that on Christmas Eve ... but ho hum whats a week between friends, eh?!)

Saturday, December 16, 2006

Saturday 16th December 2006

Hello! Well its about a week in to our blog, and I am afraid I'm not very punctual ... a bit erratice really! But the fact is that we're really trying to enjoy our time at the moment, with the run up to Christmas, and with so much to do, so many people to see! We're just making the most of the flurry of social engagements! But we do have a nightmare ... went to wheelchair services on Friday. They tried Lew in a child wheelchair, absolutely no support whatsoever (have to try it to cross a box ... forms forms forms) then tried him in a disabled maclaren buggy - very good, but not enough support, so that crossed that box too. Well the next appointment they have for Lew is 20th February ... but seeing Lewis they realise we cant wait that long and so they have made us a special emergency appointment on Tuesday (19th) at 1.30pm ... arrgghhhh we have a hospital appointment at Sheffield for Lewis to see the metabolic specialist at 2pm .... heeeeeeeeeeelp! So in a real quandary now ... need to talk to James about that one! See if special seating can see us on Tuesday morning instead of Tuesday afternoon, fingers crossed! So what have we been up to this week? Wednesday we were visited by Margaret Goodwin (SENCO) and her colleague Fiona. Lew took quite a shine to Fiona and kept blowing her kisses! Saucy! Anyway, as our jenx giraffe chair hasnt arrived yet, they have ordered one for nursery and it was being delivered to their office on Friday (yesterday) and so they are going to allow us to have that chair at home until our jenx giraffe for home finally arrives! We should get that early next week. We spent the afternoon with Denise, Maisie and Oliver watching Monsters Inc, drinking tea and being amused by Oliver's attempts to drive his poor mother completely bonkers!!! But he is soooo gorgeous, he can get away with anything! Wednesday evening we had George and Anna stay over which was lovely. They are just the most wonderful children and we can quite happily say that we adore them! It was my dad's birthday on Wednesday too, but I FORGOT whoops! Thursday Kath (physio) came to see Lew. She showed me some exercises to help him with his breathing and also for when he wakes up in the morning. You see when we put Lew in bed, he stays in exactly the same position until morning as he cannot move himself. So Kath showed me some exercises to get his circulation going again before he gets up. After Kath had gone we went to nursery and had a lovely day (as usual!). Friday was our wheelchair services appointment. They were so kind and helpful, but bless Lew really didnt like the wheelchair and he had an RAS for them. It does frighten people so! Friday evening I went out with the wonderful ladies from Lewis' nursery for their Christmas Meal ... we went to China Rose in Bawtry and it was scrumptious! But I am soooooo old and soooo tired, I was ready for my bed by 10.30pm!!! So here we are again at today! Well I was all lined up for a LOOOONG lie in but Richard and Teresa invited us to join them in a visit to Sundown Adventureland (a fab theme park for children aged 2-10) so I dragged myself out of bed and we went there. It was great, Lew was sooo excited to see Luke and he enjoyed meeting Father Christmas (again!!!) and getting a present, and seeing all the children playing. It was cold, but great. Later, Teresa, Luke, Samuel, Lewis and I popped up to see Olga, Chris, Natasha and Iliya (sp?) for a lovely cup of tea. Olga was so kind, she fed all the children! Lew was soooo tired though, but he still enjoyed seeing the older children play. We came home around 6.30pm, James went off to his poker night at Richard's, and Lew had his bath and I've just put him in bed. He enjoyed his bath and we enjoyed our story (Fox Busters by Dick King-Smith) and Lew was soooo scrummy! He didnt want to go to sleep (even though he is sooo shattered!) so he kept being so cute, knowing full well I cannot resist and cannot leave him easily when he is blowing me kisses and trying to talk to me! Oh I must tell you, at Olga's house, Iliya (sp) bumped his head and I said to Lewis 'oh he's bumped his head' and Lew put his hand on his head and made the 'h' sound and then put his hand on my head and made the 'h' sound and he was doing the same in bed and pointing to nose, eyes, mouth and then blowing more kisses so you can imagine it was VERY DIFFICULT to resist and to leave him to go to sleep! But I finally managed it! So now its my turn for bath and then bed as we are up early tomorrow to join Yolanda, Stephen, Naomi, Joshua and Joel at church in Scunthorpe as we have tried to get there several Sundays in a row and it just hasnt worked out with hospital admissions and illness and bla bla bla! But fingers crossed tomorrow we will manage it! Only 8 shopping days until Christmas ... does that include today? If so, I think Asda is shut now so better make that 7 haha! Love to all x

Tuesday, December 12, 2006

Tuesday 12th December 2006

Wow been kind of busy!! So sorry if we've seemed quiet! But with our lives kind of 'back in action' again (at least until January) we've been catching up! On Sunday Lew and I had a lie in (I think Samuel did as well or he may well have spent the entire night on his computer!!). Granny and Grandad (maz and col) came to visit mid morning which was very enjoyable, Lew loved his grasshopper from Gran Canaria! Sunday afternoon we were meant to go to a Chris Tingle service in Austerfield with Lesley and Kevin (and boys) but as Lew had been up for several hours in the night and was (oooops) very very sick all over granny after his lunch, we decided it was best not to go in case he was ill again in church! Later on, we went to Richard's and Teresa's annual Christmas Party which was great! We've been every year since we first met Richard and Teresa. The first year we went, I was a huge lump of pregnant-ness sat in the corner hardly able to move!!! I took a couple of quizzes (X Factor and Strictly Come Dancing) and I even took 'real' prizes ... none of these chocolate prizes for winning my quizzes haha! (My prizes were Avon products I've had for quite some time now from when I used to be a DING DONG Avon lady lol!). The food was fantastic ... Teresa really should consider doing catering as a job! And the company was great, as usual! The children had a fabulous time - in fact we hardly saw them!!! Yesterday (Monday) Lew and I (again!) had a bit of a lie in ... getting the hang of this 'lie in' lark!!! ... and then we went to the office in Pontefract as I am trying to get back into 'work mode' so had a meeting and did some work! All very strenuous! Actually it was great to see everybody and Lew had the best time, playing and flirting with all the ladees! So here we are at Tuesday! Well, first of all (after ANOTHER lie in!!) drove across to park outside Granny and Grandads house, then walked to the chemist to get Lew's new medicine (keppra) then walked to DRI for the hospital childrens party. It was fabulous! Lew had such a great time, lots of singing and games and lovely food, and then Father Christmas came and he got a present AGAIN! Thats twice he's met Father Christmas in the past week! It was a great party and it was lovely to see all the staff at DRI who we have come to know and lurv! Lew had a great time playing with Tobey and 'sword-fighting' with their balloon animals from the clown! When we came out, it was POURING with rain so Kevin (Lesley's husband) drove us to Mazza's and we all went in for a cup of tea. Oh nooo I just remembered I didnt have an egg custard tart, booo hooo! Staying at Mazza's for a couple of days are Wendy, George and Anna. So we came back over to our house, dropped off George (to play with Samuel) and took Anna to the outlet to do some chrsitmas shopping. The decorations at the outlet are so lovely! So now I'm going to give Lew is bath and get him in bed, then I'm off round Denise's for some adult company, some wine and some cheese and some breadsticks! Ooooh we are pushing the boat out! More tomorrow I expect!

Saturday, December 09, 2006

Saturday 9th December 2006

Well ... 8th December came and went and WE SURVIVED! That date has had such a huge significance for me (us I think) this past few weeks, since we heard the doctors were testing Lew for battens disease, and now its gone and past and we're all still in one piece because ... Lew has tested negative for battens, phew !!!!! We are now awaiting results from a gene test for dystonia, and we are seeing the metabolist on 19th December who will be wanting to test for creatine deficiency and mitochondrial disease. These will require bloods so Lew will have these when he has his next MRI early next year. So for now we can relax and enjoy Christmas and hope that Lew doesnt have any more major epileptic type seizures. He's been continuing to have very mild ones (conscious) in the night so either James or myself has gone up and laid with him in bed to comfort him while they are going on and of course to monitor if they worsen and we need to give Lew his medicine. We have been prescribed a new medicine called something I cant remember ... keppras I think. We start it on Monday. It should (if it works) have a major impact on Lew's twitching ... fingers crossed! Its a sad day for us as well though ... because Aunty Nicola, cousin Evie and nanny have all gone home today. They have spent the past week with us and its been so fab. Aunty Nicola has been cooking fantastic meals every night out of my very paltry cupboard (she is a magician I am sure!) and Evie is the most wonderful little girl you could ever ever meet and we love her to absolute pieces! Lew has had a wonderful time spending time with his nanny. We were very sad to see them all go. But they will be back early next year for another visit, hooray! Thank you to Uncle Jason for our lovely christmas card and for Lew's and Samuel's presents which they will be VERY excited to open on Christmas Day! So today we are going to test drive a car (mazda 5) and thats about it! We decided to go out last night, as a christmas meal out for the neighbourhood bunch of friends had been arranged for months but we really didnt think we'd be going, whatever the results were yesterday at the hospital, but we felt so elated (that is the right word I think!) that we decided we really needed to share our happiness with our friends and neighbours so we went out for a lovely meal at Balrams and the company was just awesome, totally the best meal out we've had for a loooooooooong time! Thank you to nanny val for babysitting Lew! Sorry we kept you up so late! I had a lovely lay in this morning ... not through hangover as I had only a couple of glasses of wine - cant let go completely as Lew still might need us to be responsible parents in the middle of the night!! - but because I was finally able to sleep and relax for the first time in a few weeks! Oh and Friday night, oh it was the best .... my sister Nicola plucked my eyebrows (she used to be a beautician) and it was the most relaxing thing I've had done for ages and I said to her she could pluck out all my eyebrows and I wouldnt care because it was just so lovely to feel so relaxed and totally un-stressed for a few minutes! It was wonderful to see Samuel after a week away, we had the most scrumptious cuddle! And I hope so much that he was good for Aunty Tania! Thank you Tania, Nathan, Daisy and Millie for looking after him this week! I hope you gave him plenty of school work to do! So I must make sure I book Denise and I in for that back massage at Bliss! Well, must go and get dressed and such like! Lots of love to everybody, we're having a very loving day!!!

Thursday, December 07, 2006

Thursday, rain, santa, more rain and a tornado haha!

Hello! So today ... well Lew had a bit of a lay in which was nice. I took advantage of Aunty Nicola and had a shower and washed my hair so looked half decent today! At around 10am, beautiful sunshine, blue skies ... gorgeous! So off we trot (me, Lew, Nicola and Evie) to Asda on the way to the HomeStart christmas party at the Salvation Army church behind the Dome. We feel some spits of rain but as there are no clouds and just blue skies, we assumed (doh) the water was coming off the lake!!! Anyway, we had a look round Asda, Nicola bought me the most scrumptious jumper dress cos I am soooo poor!!! And then we came out to walk to the church for the party. Well ... you can see the Salvation Army church from the road .. but it is not clear how to actually get there. So we walked down Booth Road (Lane, whatever) past the Dome and we walked all the way around the Dome and we walked over the little bridge and we came to a gate into the Dome car park and so we went through it ... by now it was SLINGING IT DOWN WITH RAIN!!! We walked round the Dome car park to where we thought the entrance to the Salvation Army church was .... hahaaaaaaaaaaaaaaaa a FENCE!!!! So we had to walk all the way back round the Dome, then round the little lake at the Dome along the tiniest little path, through the muddy grass in the wind and pouring rain .. and we finally made it to the church 25 minutes after setting off from Asda. Please bear in mind that from Asda you can see the Salvation Army church across the road!!! When we arrived I was in kind of a bad mood! The first comment we had was 'oh was that you two we could see over there walking around?' - if that woman had DARED to laugh I think I might have thrown in the lake!!! Second comment was 'oh has it just started raining?' ... JUST STARTED???? Whaaaaaaaaaaaaat? We walk in like drowned rats and its 'just started'? Not best pleased! Anyway, thinks improved immensely! The party was fab, we got a seat, the children were given plates to decorate with stickers and crayons and then a christmas card to decorate. Then we moved to an adjoining room for songs then we came back through and the main room had been transformed for us all to sit down and enjoy the food that had been laid on. Then we went back through to the adjoining room and Father Christmas arrived with presents for all the children! Lew and Evie were soooooooooooooo impressed that Father Christmas had presents for them! Lew got a super book which makes sounds and Evie got a gorgeous Hamleys teddy. The event was amazing, so much effort and preparation had gone into it, and the most amazing part is that it was all free - and HomeStart is all volunteers and they were fab! So thank you so much HomeStart, for everything! We delayed leaving until the rain had definitely moved on and we managed to get back home again without getting soaked although the wind was so cold and strong that we had face and neck and head ache when we did get indoors and we couldnt wait to just chill on the sofa! Lewis and Evie had gone to sleep on the walk back so we let them carry on sleeping. Jessica and her colleague arrived from occupational therapy to make sure Lew's bath lift was fitted properly. And then I went to Asda (again ... but in the car this time!) with me mother and bought two bottles of Asti (proper Martini stuff, only £4 a bottle bargain!) and mum bought some salad and stuff. We had an adventure as we used the 'self serve' till where you 'beep' your own shopping and then you have to insert your money into the slot and its soooooo cool! I want to get a job at Asda now on the till, I had a great time beeping!! Anyway, what about this tornado eh? When we had to get the train up to Royal Free Hospital (when I lived in London and had to take Samuel cos of his haemophilia) the train used to go through Kensal Green so I kind of feel connected somehow in some distant way because I went through a train station called Kensal Green and the tornado was at Kensal Rise and so ... well six degrees of separation and that lol! Lew had his second bath tonight in his bath lift seat thingy. I took some pics and will add them to the gallery on the right. We got Evie to come and play with him in the bath this time, so he enjoyed it alot more. Evie didnt get 'in' the bath, she stood at the side next to me and we both ended up soaked as she does enjoy playing with water!!!! It was great fun and of course it helped to remind Lew that having a bath is fun and so lets hope the trend continues tomorrow night and the night after and after and after and .... on and on! Lew is in bed now, after his pink milk and a story. His milk is pink not because I give him strawberry milkshake (!!) but because I put his medicine in it. He doesnt like to take his medicine anymore and we have to get it down somehow! So each morning he has his sodium valproate (the pink bit) and his multivitamins/fish oils stuff, and his lactulose stuff in a bottle of milk and then in the evening he has the same minus the vits and fish oils as he only needs that once a day. We have to give his chlobazam separately so that we can make sure he has the lot but we have to trick that in by squeezing the syringe into the side of his mouth while his bottle is in!!! Lets just say Lew is alot better at avoiding swallowing it than we are at sneaking it in his mouth! Well, going to have a bath and then go to bed soon (after put new photos on) as got to get up early tomorrow for our appointment with Dr Mordekar at Sheffield tomorrow morning. Our appointment is at 9.40am. We have NO IDEA what he will say to us. He may have some results for us, he may not. We'll have to wait and see, but one thing we must make clear to him is the severe decline in Lew's condition since we last saw him a month ago. So, fingers crossed, wish us luck, etc. Oh and I just HAVE to mention .... the old man with grey hair off Tikkabilla ... Catriona saw him today in Burger King (or KFC or Macdonalds) .... and he spoke to her! I was well excited to hear about Cat's brush with fame!! I hope you are too!

Wednesday, December 06, 2006

Lew's bath lift

Well, Lew had his bath tonight using his bath lift. I have to admit he didnt like it one little bit, but then its all completely new and when its lifting, it does sound like an industrial vacuum cleaner! However, it did mean that I had both hands free to wash him properly and as he gets more accustomed to it, he will be able to play in the bath like he used to before his problems started. So we are just waiting for the Jenx Giraffe chair now .. hope it comes soon as poor Lew is stuck in his pushchair at nursery as the rifton chair they have got there is no good anymore! Right, I must do some work now so I can get at least a couple of quid in my wage packet next month! Oooooooh hoping (fingers crossed) we have found an au pair .. watch this space!

Socialising can be such hard work

Hello again, just got back from my first evening social event for a while now. Myself, Denise, Teresa, Mun and Jane went to Van's ladies night at the Childers Pub to raise money for Tiddlywinks nursery. It was a lovely atmosphere, plenty to look at and I won a little blue teddy bear on the raffle! Denise bought me and her a raffle ticket from the Bliss stand and Denise won £10 off a St Tropez fake tan (if you know the story then you will laugh just like me and Denise did!) and I won 'buy one get one free' back massage, so me and Denise are going to have one each, for half price bargain! But I am just so very tired, it was lovely to talk to everybody, but after a little while it was so difficult to continue to be involved in conversation and so difficult to not let my mind wander back to Lewis and how he is. Still, I got out of the house for a little while and I was kind of normal!!! So just wanted to say thanks to the ladies for their company and hope to catch up again soon. Hugs to Karen for having a poorly tummy!

What we've been up to today

Well, it started out a miserable wet day and it hasnt changed much! Its just got dark now! Me and Nicola took Lewis and Evie for a walk around the lake (in the rain ... yes nutters!) and we had a quick stroll around the outlet. We came home for a delicious lunch of leftovers, that reminds me, there are some leftovers left over (haha) so I'll snack on them in a mo! Nicola has been cooking fabulous meals for us all the time so my waistline is expanding and expanding!! I will have to invest in some elastic! Lew and Evie have been enjoying playing with the electronic christmas decorations that make lots of noise!!! So we have been bombarded with various electronic sounding christmas tunes and it was a case of headaches all round I'm afraid! Oh did I say, Lew's bath lift has arrived! Will go and try and set it up after tea (which Nicola is cooking AGAIN!!!). Who needs an au pair? Lol! We have watched The Santa Clause on DVD and are now watching The Santa Clause 2! Had a nice chat with a potential au pair from Argentina, but it seems that girls from Argentina cannot become au pairs in UK so not sure what to do now! Anyway, I think like most au pairs I have contacted she wants the bright lights of London!!! But it was lovely to chat anyway! My internet explorer is having a funny turn. I had IE7 but it seems to have downgraded itself to IE6 and if I click on a link on a website, it wont work so I have to right click and 'open in new window' ... no idea what is up with it! Have tried switching it off a couple of times but it hasnt made any difference, grrr! Have spent a little time chatting to my msn friend Tracie from Kentucky - she is my solitaire showdown nemesis! Hmmmm ... how many days until Christmas? Something ridiculous like 19!! Mad! Anyway, I meant to tell you before I got waylaid by leftovers (again!) about our walk around the lake. On our journey home, we decided it would be nice to sing christmas songs ... so we did ... we la-la-la-ed the bits we didnt know! And when we ran out of christmas songs to sing, we started singing the theme tunes for childrens programmes like Noddy, Fifi and the Flowertots, and Balamory! At that point I think we realised we were completely barmy and ready for the white coat bridage but luckily we had arrived home so we were safe!

Wednesday

Well its a lovely (not!) sunny (not) rainy (yes!) morning here in Doncaster. What is wrong with Doncaster? Why do au pairs only want to go to London? Dont they realise how horrid and smelly and dirty London is? And how beautiful and green and clean and friendly Doncaster is? Hmmmm? We had an au pair all lined up to start on 8th January and then yesterday evening she emailed to say she had found a different family in bladdy LONDON ... grrrrrr! So we are back to square one! Back to searching for an au pair who wants to come and live in the grim and grimy north! In fact, I have now recruited the wonderful aunty Wendy to write a profile for us on aupairworld.net in the hope that the offers will pour in! Its a shame its not male au pairs ... we could post photos of naked women instead haha! Well Lewis is sat next to me on the sofa eating croissant. Evie is sat on the other side of me relaxing watching Noddy on cbeebies. What a fab channel cbeebies is ... NO ADVERTS!!! Nicola and my mum are in the kitchen chatting while mum makes me a lovely cup of coffee (3 spoonfuls of coffee please, I like it strong!). Lew slept well last night until around 8am this morning when he was having trouble breathing and kept coughing. He has so much phlegm on his chest, because he can hardly move, so its a bit like someone suffering from cystic fibrosis - I will need to talk to physio about giving him some of that massage where they slap the back really hard to dislodge the mucus ... such a lovely subject for breakfast time!! Havent heard from my oldest son since he left on Sunday to go to London! I assume he is having a good time!!! I havent heard otherwise and I havent had any screaming phone calls from Tania begging me to remove him from her lovely home!! Today Lew's bath lift is being delivered, very exciting! And Jessica (our occupational therapy lady) is coming tomorrow to fit it for us. Lew's chair still hasnt arrived!!! Oh did I mention we have our christmas tree up and its like santa's grotto in our lounge now? In fact, its so like christmas, its great! We are all having a very christmassy week!

Tuesday, December 05, 2006

Family

James and I are lucky to have wonderful families. First of all our two wonderful sons. Samuel is 13 (nearly 14) and has been a joy and will I am sure continue to be so! He is reaching that kevin and perry teenager stage, but even so he's lovely, even if he sometimes makes me cross!!! But we love each other sooooo much and we always have a big cuddle. Samuel is having a bit of a hard time with things at the moment as Lewis is taking up most of our time, but I think Samuel knows how much we love him even though we're not here for him as much as we'd like to be. Samuel has some fabulous websites and is amazing at animations!! I will get some links from him when he arrives back from his Aunty Tania's house! Samuel has severe haemophilia A (just like his Uncle Jason!). He manages quite well, he does his own treatment but sometimes he likes to have a rest so I do it for him! Lewis is nearly 3 and is the most scrumptious happy chap you could ever meet! You can read more about him elsewhere in this blog. James mum and dad, Marion and Colin, have supported us through so much these last few months. They have given their time and effort and support to us and helped us through some hard times. And of course they are ADORED by their grandson Lewis and Samuel thinks they are pretty cool too! Wendy is the most wonderful sister (in law) and even with her own very busy life (involving the decision to emigrate to Australia with the family) she has still had time for us and has provided us with unlimited support and love. Wendy recently came to stay with us with our gorgeous niece and nephew Anna and George. Lewis and Samuel very much enjoyed having them around and it was great to get a hot meal inside us every night, a la Aunty Wendy! Lucy and Mike have been very generous with their kind words and support and we had a lovely surprise visit from Leamington Spa one Sunday afternoon. We all went for sunday lunch together and spent a fabulous afternoon in a local pub/restaurant enjoying good food and great company! My dad Les, has just been great! He came up at a minutes notice when I really needed him, even though he had to put his cat in the vet to be cared for while he was away. He sends me texts often which usually make me laugh, especially as he sends them up to 10 times because he doesnt think the first one has gone so he keeps pressing the send button! When my dad was up here last time, I fed him chicken jalfrezi and garlic naan - my dad doesnt like foreign food and wont eat garlic ... hahaaaaaaaaaaaaaa! He loved it! My mum has found this all very difficult, but we are lucky that she has come to visit us this week, stowing away in Nicola and Lee's car! Lewis has loved having his nanny around, especially as she came to nursery with us today for a couple of hours and spent some time with Lew and the other children making play dough shapes! My sister Nicola and her wonderful husband Lee and their most scrumptious daughter Evie! Lew LOVES Evie to pieces and so does Samuel! She is just the cutest, she is so bright and clever and we feel so lucky to have been able to spend this last week with her and her mum. Nicola is a fab mum and Lee is a fab dad, so its no wonder Evie is such a top girlie! My sister Tania (the baby of the family!) and her partner Nathan, and her gorgeous daughters(my nieces) Daisy and Millie. We have kept in touch with texts and emails and phone calls and I hope to see them soon although with it being so close to Christmas I expect it will be next year now! Only 3 weeks until christmas after all! Daisy has been very supportive to Samuel, as he has not been getting much care and attention while Lewis has been so ill. They speak almost every evening on msn and are very close indeed. Samuel adores Daisy and I hope they will continue to remain such good friends now and into the future. My brother Jason (who inspired me to start this blog) is quite possibly one of the nicest men most people would ever meet. He doesnt seem nice all the time (I hear he can be quite grumpy!) but deep down where it matters, he's a gem so its no wonder everybody loves him! Check out his blog (see my links) - the Mighty 'C'.

Our Friends

I am very lucky to have the luxury of some real friends. I would especially like to mention Rosalind who was witness at my wedding and who has stuck by me through the years. Her daughter Emma is also a great friend as are her husband and 3 sons and not forgetting Hollie, Alfie and Spencer! Roz's mum Elizabeth is also very very special and she cares about us alot and that is very very special. Yolanda, Stephen, Naomi, Josh and Joel have been the best friends anyone can ask for. They have been there for us through all our recent experiences and have made a long and tiring journey several times to be with us when we have needed them. Even with Joel's asthma problem (and the recent chicken pox scare!) they still have time for us and we love them! Do you all remember celebrity big brother when Preston and Chantal fell in lurv? Well thats when I met my friend Ann-Marie (in the Channel 4 CBB chat room!) and we've been great friends ever since! Ann-Marie has a wonderful family, and we were lucky enough to have them all come and join us at our wedding in August (Felixstowe to Doncaster is a very long way especially on that AWFUL road ... the A19 I think!!) and Shannon and Savannah were the most beautiful bridesmaids! We dont get to see much of each other (because of the A19 I think!!) but I know that Ann-Marie and Mike and the girls are there for us always. On our honeymoon in August, we were lucky enough to meet Hannah who Lewis (and Samuel!) fell in love with immediately! After taking Hannah on a few trips out in the car, we finally met her mother (Angela), father (Lennie) and sister (Ashley) and since then we have become great friends. Angela is the best cook in the entire world!!! And she can make me feel relaxed just by my listening to her lovely Welsh voice! At Lewis' speech and language group I also met Tobey's mum Lesley and her family. Lesley has been a great friend in the short time we have known each other and I hope we will get to know each other much better and continue to be great friends as the years go by. We are lucky to have a super group of neighbours. We made friends with Richard and Teresa when we first arrived at Lakeside and Richard and James have become firm friends - Richard was James' best man at our wedding in August! Luke, their son, was our pageboy at our wedding and he did the best job ever! Lewis ADORES Luke, but as usual, its a nightmare trying to get them in the same place at the same time! But we try! Our direct neighbours Pat and Paul have been wonderful, and its a shame that we dont get to see them more often, but of course we are all so busy it tends to be a quick hello how are you as we are getting in or out of our cars!! My wonderful friend Denise has been marvellous with her support and encouragement. She has the most wonderful children, gorgeous Millie (bridesmaid at our wedding) and Oliver and a great husband - in fact they are a great family and I am so glad we are luckily enough to know them. We are so lucky to be surrounded by such caring and supportive friends, Jane and Simon (and Georgia and Isaac), Munmun and Paulash and gorgeous Livia (and Mun makes the most scrumptious bangladeshi food yummmmmm!), Karen and Patrick and Annabelle, and of course Steve and Van and their children. Steve only just joined the Friday night crew and its already killed James off! He's banned from anymore Friday nights out this year (self imposed ban) due to the huge amount of alcohol he managed to consume this Friday night just gone by!

Christmas

Well, on Sunday afternoon we put up our christmas tree and our christmas lights, and its just sooooo fab! Its like its christmas every day! Especially having family staying and with toys everywhere (from Evie and Lew) and it being dark so early and it being soooo very cold up here in Doncaster! I have purchased some Whizzkidz charity christmas cards, but sadly have not yet got around to writing them. Given my track record of late (example - wedding gift thank you cards .... they are ready in a pile to write but not written yet!) christmas cards might get sent in time for Easter next year! As for christmas presents, again its just not on our agenda! I have bought bits and pieces for my wonderful friend Rosalind (my first proper friend when I moved to Doncaster many years ago!) who has kindly agreed (I kind of forced her!) to have us at her house for Christmas Day! So I have got lots of little bits and pieces for her and her family to thank them for their hospitality on 25th December! On 26th December we will (fingers crossed no hospital visits over Christmas) be at home and James' family will be joining us from New Forest and Leamington Spa with their left over food from Christmas Day so we can have an all day 'party'!

My life at the moment and how I feel about it

Its quite hard to say how I feel at any given time. Some days I am quite positive and upbeat and other days I just want to die. But of course I have two huge responsibilities which keep me here and I have to think of those, my two sons who love more than anything or anyone in the entire universe! Tomorrow (Wednesday 6th December) Lewis' bath lift is being delivered from the Red Cross! So excited! It will be so great for Lew to be able to play in the bath and enjoy it again! At the moment we have to hold him like a newborn baby and so its very very difficult as he's very heavy and he hates to be laid back, it causes a reflex anoxic seizure. So when his bath seat is installed, he'll be able to enjoy baths again, once he gets used to the sensation of moving up and down on the lift!!!! We are still waiting for Lewis' jenx giraffe chair, but when it arrives it will be soooo fab! Jessica (our occupational therapy lady) is just fantastic! She has been so good to us and has made sure she has communicated with us regularly to let us know what is going on, and she is so genuine and caring, I hope the NHS appreciate her! Kath and Janette, our physio ladies, are wonderful too! They really truly care about Lewis and on our very frequent visits to DRI, they have made sure they have come and spent time with Lewis on the ward and tried their best to make him comfortable. Dr Mordekar, our neurologist, is fantastic! He has helped us so much with Lewis' ongoing deterioration and has tried so hard to support us. He has continued to look for a diagnosis for Lew and he insists that he will find out what is wrong with Lew and he will help us as much as he can, and he is such a genuine, kind man, I totally believe him. We are seeing Dr Mordekar on Friday at 9.40am. We are also seeing a metabolist, Dr Shammas (I think) at Sheffield on 19th December and then early next year Lewis will have another MRI to see if there have been any changes. We know that Lewis has been tested for battens disease but we dont know if they have any firm diagnosis on that yet .. I guess we'll find out on Friday.

Tuesday 5th December 2006

Encouraged by my brother Jason's blog (the Mighty 'C') I decided to start my own but have no idea what to write so will just see what comes out lol! Last week I started going to nursery with Lewis. For 3 weeks before that he had missed nursery (and hence I had missed work!) as we had been in hospital. So last week, as Lew is now too poorly to go to nursery on his own without 1:1, I started going with him and spending the day with him as his 1:1 and its been great for both of us!!! Lewis has enjoyed spending time with his friends, and I have enjoyed being with all those lovely, happy, sociable children, making me feel so much better about life in general. Children definitely keep you young! Samuel has gone to stay with his Aunty Tania in London for a week. My sister Nicola and her scrumptiously scrumptious daughter Evie have come to stay the week with us here in Doncaster with my mum. My mum is just making me a cup of coffee and has given me a lovely bar of chocolate called Noir Framboises yummmm! So, my family. I am married to James (12th August 2006) and my sons are Samuel (from first marriage) who is 14 in May 2007 and Lewis who will be 3 on 28th February 2007. My mum, Valerie, lives on her own in Twickenham. My dad, Leslie, lives on his own (well with his ailing cat Sheba) in Teddington. My brother Jason (Mighty 'C') lives in Teddington too. My sister Nicola lives in Strawberry Hill with her husband Lee and their daughter Evie. My sister Tania lives in Twickenham with her partner Nathan, and their daughters Daisy (15 in March 2007) and Millie (3 in March 2007). So a bit more about Lewis. Lewis was born on 28th February 2004 and the pregnancy and delivery were normal. Lew developed normally, like any other baby of his age. He sat up at around 6 months, he started to crawl around 9 months, started to cruise round the furniture at around 11 months and started to walk (a little late) at around 17 months. From around 9 months Lewis started having reflex anoxic seizures. Just before Lewis' 2nd birthday (February 2006) Lew started to limp on his right leg. He was diagnosed with irritable hip and we were told to rest it for a bit. After a few weeks he was able to walk again, but then in April 2006 he stopped walking completely and would only crawl everywhere. In July 2006 he had his first seizure and we went into hospital. On 11th August Lew had his MRI. On 12th August James and I got married and on 16th August we went on our honeymoon - all 4 of us! In early September Lew had another major seizure and we were admitted to hospital for several days. Several tests were undertaken. In November 2006 Lew had a lumbar puncture, muscle and skin biopsies at Sheffield Childrens Hospital under general anaesthetic. On 2nd December we had to ring 999 for an ambulance for the first time. Lew was having a major seizure and it was affecting his breathing and he was turning blue. That was very very scary!

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!