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Friday, March 30, 2007

Panic

Hello! Well what a panic we had yesterday, but lets start at the beginning. Yesterday morning we had a bit of a lie-in but got up around 9am as we had to get ready to go to the hospital for our appointment with Dr Mordekar. So I gave Lew his bath, then I had a shower while he laid on the bed watching TV, then we drove to the hospital but it was raining so EVERYBODY (I am sure!) was in their car and there were no parking spaces anywhere near DRI!! So luckily Diane and Mandy (Diane's replacement for when she starts her new job next week) had just arrived at DRI and I dropped Lew off with them and drove to Roz's, parked there and Roz very kindly dropped me off at DRI. Diane, Mandy and Lew were in the coffee shop just inside the Gate 4 entrance and Lew was somewhat distressed as his tube had managed to come out a bit and so Diane had had to take him out of his pushchair and this had upset him as I was not there. He was a bit tired anyway so that didnt help. We walked round to the outpatients for our appointment and shortly after James arrived which cheered Lew up quite a bit! He does ADORE his daddy! Our appointment was at 11.30am but as usual it was later than that because Dr Mordekar doesnt like to rush his appointments and we totally appreciate this as we get our turn as well. When we went in, Diane and Mandy left us to go to their next job. Lew was a little more settled and Dr Mordekar was able to have a good chat with us about stuff. It was really only a check up as DRI and Sheffield have done all they can for Lew and so it was a case of 'anything new?' and at the time the answer was no, nothing new, all the same. We saw Jeanette before we went in to see Dr Mordekar, and we saw Jill and Rachel for a few minutes when we came out and this cheered Lew up alot! We popped to Tesco to get some healthy food (fish, brown rice, steam veg) and then James did some work at home (which involved eating very fattening quiche with Steve - work that one out!) and I went round to see Denise. Lew stayed at home with James so he could spend some with his daddy so it was a bit of a break for us both from each other. I had two lovely cups of coffee at Denise's and enjoyed seeing Maisie and Oliver. Oliver is a total tinker, with his GORGEOUS innocent face and his terribly mischievous attitude to life! Maisie did some lovely painting and then they both had a go on the computer and Denise and I had a nice chat and caught up on gossip. I came home just after 5pm and we had decided to put Lew to bed as he was tired ... I was just flushing his ng tube before giving him his medicines so we start his overnight feed and he went all rigid, arched his back, and started to sort of choke/gurgle and have trouble breathing. His eyes were very very distressed and he was losing colour so I made the immediate decision (split second) that we needed an ambulance NOW so James rang 999 and within a few minutes a paramedic arrived soon followed by an ambulance. My main concern was that somehow I had put fluid down Lew's tube and it had gone into his lungs. I was terrified that he was going to drown. The paramedic listened to his lungs and said he thought he could hear some fluid on the right side. We rang the hospital to let them know we were coming and then we went off in the ambulance with Lew on oxygen as his colour was very poor and his breathing was quite laboured. At the hospital Lew had improved quite a bit and his colour was much better. His sats were good and he was able to come off the oxygen.
The doctor had a listen to his chest and felt that there was no fluid but that Lew should have an x ray just in case, to check the position of his ng tube and to check for fluid, so the mobile x-ray unit came to the ward (very cool!) and Lew had an x-ray. It was funny because I sat with Lew with my lovely blue metal apron on and the x-ray man said 'X-RAY' and everybody scarpered and Lew and I were like lepers in the corner of the room lol! While we were waiting for the x-ray Lew had the same seizure type episode 3 times. Each time, the same. He arched his back, his body went rigid from head to toes and his breathing was very laboured like he was gasping for breath. The x ray came back and his lungs were clear but his tube was too far down so it had to be pulled back a little. Lew had by this time fallen asleep (absolutely shattered and way past his bedtime - 8.30pm by now) and the registrar did say he would prefer if we stayed overnight for observations. Being a 'veteran' of staying overnight on the ward, I knew that Lew would be much better off in his own bed as it was shattered already and he needed a really solid night sleep which he wouldnt get on the ward so I asked if we could go home. As the registrar knows us well (and he is so lovely too, he always has plenty of time for us whenever we see him) he said that was okay so we were allowed home YAY! We came home and put Lew straight to bed and he had a really good night sleep. I had a bath and then I went to bed too although I didnt sleep too much as I was checking on Lew on the monitor all the time! So this morning - well we had a lie in and so we didnt get to baby massage which was such a shame as it was the last one, but Lew really needed some extra sleep. We got up around 10.15am and I gave Lew his bath and got him dressed as usual. And we had the whole day stretching ahead of us so I decided we could have a wander round the shops in town. We collected Roz and drove into town and had to go to the bank first to get some money! But because I specifically asked not to have a card on my account (so I cant spend willy nilly now I dont have a job) I couldnt get any money out!!! So we were in the bank for nearly an hour trying to sort it out! It turns out I have to have a card so they've ordered one for me but I've asked Roz to look after it for me when it comes so if I want any money out, I will have to go and ask Roz for my card first! We had hoped to meet Lynda for a quick cuppa but being stuck in the bank messed up that idea! We then went to various cheapy shops around town then went to 4 Seasons for some lunch (this was about 2pm). I had salad and Roz had ... steak pie and chips!!! Roz insists she asked for salad but they gave her the wrong food haha! Lew had a snooze so he was able to catch up on a bit more sleep. We met Karen and Craig (with Daniel, Heather and Stephen) to get James' avon stuff then we had to rush back for Roz to collect Matthew from school. Lew and I stayed at Roz's playing with the dogs while Roz went off to school. Lew loves the dogs! They make him laugh everytime he sees them and they are so affectionate and gentle. We popped to B&Q for some toilet parts for Roz (well for Roz's house, not for Roz personally hahaha!) and Lew was chauffeured round by Matthew who Lewis also adores! There are some people who light up Lew's face every time he sees them and Matthew is one of those people. He has so much time for Lewis and is so gentle and sensitive with him and ... well he's just a gem really! And we love him! On the way to B&Q we collected Jodie from Lakeside - another of Lew's favourite people. After B&Q we said goodbye to Roz and Matthew and came home. James and I put Lew straight to bed again and he is sleeping soundly now. He has been sooooo tired, he needs to do lots of catching up! James then went round to Steve's with his home made curry for them to share! They are mega obsessed with this diet (which is of course great!) and they were comparing calories lol! Jodie and I watched The Da Vinci Code on DVD while Jodie negotiated by text with her dad about her prom dress and her pink limousine!!! We never had proms when I was at school - I feel cheated!!! So here we are 10.30pm on Friday. My other friend Jodie is texting me from town, she's drinking cocktails - I am sooo jealous! I have arranged a 'ladies who lunch' club and our first 'meeting' is on 21st April. If you are interested in joining us, send me a text or an email. I am thinking of doing a raffle as part of it where each 'lady' (haha ladies!!) buys a ticket for a pound and the prize is something we get donated. We'll see what happens about that, but that way it can be a Lewis Jeynes Fund event as well as a relaxation and social event for us ladies! May's lunch is 26th May if you cant make the April date. But I do need to know at least 2 weeks in advance if you want to come to the lunch so I can make the necessary bookings at the restaurant. Tomorrow is Natasha's 3rd Birthday Party and we are VERY excited about that! And tomorrow evening Van, Steve, Nicky and Jay are coming for tea at ours so a busy day ahead. On Sunday (Lew being well enough) we are going to drive across to Bottesford to see Yolanda, Stephen, Joshua, Naomi and Joel at their church. We havent seen each other for ages so it will be so great to catch up. So ... hopefully panic over. Lots of love everybody x

Wednesday, March 28, 2007

The ULTIMATE facial!!!

Well what a wonderful couple of days.
First of all Tuesday. Got up really early on Tuesday morning so we were at the hospital very early! Took the tyre back to the garage first though! Kath and Janette tried Lew in the monkey stander again, but he was sooo tired he didnt do quite so well in it, but we are 99% sure it was because he was so tired from all the effort he put in on Monday and that the more he uses it, the stronger he will become - fingers crossed anyway! Just have to get hold of a monkey stander for home now!! The waiting list for getting one through the hospital is long so we are hoping we can get some money donated very quickly so that we can order one soon, as they take around 4 weeks to be delivered from the manufacturer.
At group, we made MORE chocolate crispie cakes yummy! We tried to light candles off the electric cooker ... why? Well, Rachel who runs the group with Jill and Lynda - she is having a birthday in April, but as this Tuesday was the last group before the Easter holidays, Jill got her a cake so we could help her celebrate a little bit early. I wont divulge how old Rachel will be, but let me tell you, she doesnt look her age!!! So we not only had chocolate crispie cakes, but also CHOCOLATE CAKE yummmmm! It was gorgeous! We did try very hard to surprise Rachel but she's soooooooooooo nosey (!!!) that she kept popping into the kitchen and we think she spotted the cake! We missed Cole in group on Tuesday, so a big hello to Cole and his mum from all at Tuesday group and hope to see you at the farm. Which reminds me, Jane (Joseph's mum) left her memo about the farm visit at group AGAIN - is she trying to tell us something? Haha!
The children had a wonderful morning (see photos) and we finished off the morning with a lovely relax in the sensory room!
Tuesday afternoon we went to musical minis and had a great time. We got some news from Sam's mum about her parachute jump! She is making the arrangements and should be able to do it at Sandtoft - and I found out she's afraid of heights! How brave is that?!!! To do a parachute jump when you are afraid of heights - well I know I couldnt do it so thank you SO MUCH Alison! And we will all be there to watch you!
What a GORGEOUS afternoon it turned out to be! So Lew and I sat in the garden and watched Samuel bouncing super high on the trampoline!! It was lovely!
James was away in London last night for his boss (David's) 50th (I think!) birthday meal! So belated HAPPY BIRTHDAY David and hope to see you soon.
Lew was in bed (absolutely shattered!) by 6.30pm and I had a bath and went to bed as well at 8.30pm!!!
So here we are at Wednesday! Well we had a bit of a lie in, got up at 9.30am and arrived at Lizzie's to meet Jayne and to have my 'treat' for the month. We met Lizzie's mum and it turns out that Lizzie and her sister went to the school where our neighbour Pat was a teacher! Small world! I had my waxing done and then I had the MOST AMAZING facial ever! You must must have one!!! Lizzie is absolutely the best therapist I have ever been to and the Elemis facial she did was totally awesome! It lasts 1 and a quarter hours and is just mind blowing! So if you want Lizzie's number, let me know!!! Jayne and Lew played in Lizzie's lounge while I was chilling!! Then Jayne finished her 'shift' and Lizzie, Mavrick, Lewis and I went to the Yorkshire Outlet (Lakeside Village for posh people) and had a wander round the shops in the sunshine.
We had some nosh in Cafe Ritazza then Mavrick had a snooze in his pushchair and didnt wake up even after we had gone back to the car and I had dropped him and Lizzie back off home!!!
Lew and I drove back home and watched some Baby TV (a fab baby channel on Sky that is like Baby Mozart but FREE!) then James came home and Lew had a big cuddle with his daddy!
Lew went to bed at 6.30pm, straight to sleep again! I did my exercises (wahey!) and had a VERY healthy tea (as suggested by Lizzie) and soon I'm going in the bath then going to bed!
Enjoy the photos and I'll try and catch up again tomorrow - but seeing our neurologist tomorrow - Dr Mordekar - so might not be in the mood! Not a 'big' appointment, just a check up (not like the one at Great Ormond Street at the end of next month - very scared about that) but still stressful.
Love to everybody xxxx

Monday, March 26, 2007

Cardiff

Hello! Well what a lovely surprise to have a visit from my friend from Cardiff ... well near Cardiff anyway! Angela comes from Rhondda Cy non Taff (I think thats how you spell it) and we met on our honeymoon (mine and James' honeymoon, not mine and Angela's!). Anyway, that was this evening - Lew and I have had a very busy day until that point! I got a picture of Angela and I together, but in every one of the ones I took, one or the other of us looked rough so SORRY ANGELA but my camera, so I chose the photo hahaaaa! PS. if any Donny fans are going to the game on Saturday, Angela does some work at the Millenium Stadium as a steward so dont forget to say HELLO! I got up early enough to fit in my 30 minute exercises (whohoooo definitely getting into the swing of it now!), got showered, then got Lew up and bathed. We got dressed, and drove to DRI for playgroup. We were chatting to the lovely volunteer ladies at the front desk when Marie came along so we walked down to the childrens hospital to wait for group to start. Daniel and Eden arrived, and Lew was very happy to see them. It was very exciting for us as well as Kath (physio) wanted to try Lew in a standing frame and it was soooooooooooo cool (see photos). It was a surprise to see how tall Lewis is!!! He hasnt been in a proper standing position since last April!! It was so awesome to see him in the stander and he really enjoyed it too! He did so well with supporting his head although it was very hard work for him. He was okay at lifting his head from leaning forward, but he had to be careful that he didnt let his head go too far back as he lost control then and was not strong enough to bring his head back to upright from that position, but he tried sooooooooooo hard! And also, he tried so hard to look to his left and right, it was totally amazing to watch!
Making rice krispie cakes ...As Lew was trying out the stander, I stayed in group for most of the morning, but managed to pop out for half an hour when Lew was too tired for the stander anymore and went back in his giraffe chair - monkey stander, giraffe chair ... cool names! After group Karen and Craig came to have a look at the new car as they have ordered a Renault Grand Scenic on Motability as well and they are due to collect it some time this week, so I was showing them all the cool bits of the car and they are very excited!! It was the last Monday group for a few months as Eden and Daniel have 'grown out of' the group now. They have both come on so well and are ready for regular nursery/school. So it was sad as well, but we will all keep in touch! I told Rachel and Jill that they should keep the Monday group running even though its just Lew, but boo hoo its not to be!! I'll have to keep working on them! As usual, Rachel and Jill had been very busy with the children's artwork and had made easter cards for us as well as lots of lovely pictures the children had done, a cool mobile to hang from the ceiling, and a very cute mirror! We said goodbye to Karen and Craig and drove to Roz's briefly and then Roz came with us to go to the Renault garage to collect our wheel with the damaged tyre (Retford ... nail ... puncture ... remember?!) and then to take that to Kwikfit for replacing. The man in Kwikfit was really helpful and took the tyre and my mobile number so we could come back when it was ready. So we drove back to Roz's then walked into town because it was such a beautiful warm sunny afternoon! We went in Home Bargains (yay best shop!) then walked back home again to collect the car and go and get the tyre!!! So thank you Kwikfit for the fab service - they even put my old wheel (with new tyre) back on so now I have to return the other wheel to the Renault garage so they can put it back on the car they 'borrowed' it off lol! I'll do that tomorrow after group. We went back to Roz's for a nice cup of tea and watched a holiday video from earlier this year when Roz and family went to Broncemar Beach in Fuerteventura. Lew had a great time watching Roz being attacked (as usual) by her killer chihuahuas (see photos!!).
Roz and Lew look incredibly bored!!! Then we went to the train station to collect Angela, came home for some tea and a chat, and James has just dropped Angela back off at the train station so she can get back to her hotel in Leeds ready for her meeting tomorrow morning. Its 11pm - very late for me! So I'm off to bed now! Hope you enjoy the great pics!

Sunday, March 25, 2007

Weekend

Saturday Lewis and I got up quite late!!! We were meant to be at Jill's for around 10am, but we didnt get up until just before 10am!! And I had to do my exercises (getting serious now!) and Lew had to have a bath!! So we didnt get there until well after 11am and I'm not used to Saturday traffic!! Plus I was worried about getting lost again!! But I didnt get lost this time phew! We were greeted outside Jill's house by the hugest black dog! We discovered his name is Monty Dog and he is soooo gorgeous. Well perhaps his name is just Monty, not sure, but we'll stick with Monty Dog anyway! Then we met Johnson (again) and of course Jill and went in for a cup of tea. Monty / Dog loved giving Lewis gentle kisses and Lew loved receiving them!!! (See photos). He enjoyed watching Johnson play with all his toys, and he was very entertaining! Soon Johnson's Dad / Jill's husband Alan returned from work and he and Johnson were messing about on the sofa doing hand stands and tickling and stuff and Lew found this hysterical! Lew also managed to squeeze in an hour's sleep! At around 2.30pm we came home and Lew was very excited to see his daddy! We watched a film on TV (I think) then Daddy went out to watch the England/Israel match in town. Me and Lew chilled out for an hour before he went to bed. Munmun arrived around 7.30pm with some crisps (yummm!) and Olga arrived around 8.15pm. We had some wine (not mun) and some maltesers!!! And lots and lots and LOTS of gossip!!!

At 10.30pm James came home. He spent several moments trying to open the front door (which was unlocked) with his office keys. He then came in complete with PIZZA completely and terribly drunk and frightened Olga and Mun away!!! I videoed him talking gibberish for 4.5 minutes and then I went to bed! The clocks went forward one hour - hope you all remembered! So I got up at ... MIDDAY!!!!! We went to Bawtry garden centre, then went to Tesco, then went round to Steve and Van's house for a walk around the lake, but it was tooooooooo cold so me and Lew stayed with Van and Jay and Nicky while Steve, James and Richard went round the lake. Teresa was meant to come round with Luke, but Luke wanted to stay at home and play on the sega x-box (a hybrid that Richard made up!) and even though Teresa had said he couldnt go on it, he wouldnt budge so poor Teresa had to stay at home and her cup of tea went cold! After the men had come back from their walk, Richard went home to console Teresa and the rest of us went to Ma Hubbards (between Bawtry and Austerfield) for tea. It was great! Well it was great for all of us, but not for James and his dieting! But he did try. He had soup to start then salmon and potatoes for his dinner. I had pate, then lasagne and chips, then lumpy bumpy toffee pudding!! Oooops - must remember my exercise tomorrow! It was a lovely evening, excellent company, the children were wonderful, very inquisitive and interested in everything which was really nice, and Lew loved to watch them playing. He particulary enjoyed Jay's spiky haired penguin creature that his ice cream came in! So now Lew is in bed (as I am sure Jay and Nicky are as they were all exhausted!) and I am off for my bath. It has in general been a lovely day and I am feeling much recovered from my recent miserable-ness. My sincere apologies to all my friends who have texted me who I have not replied to this last 2-3 days. I have just been so down that I havent felt able to text anything nice, and as some rabbit once said 'if you cant say nothing nice, dont say nothing at all'!!!

Friday, March 23, 2007

Thank Crunchie its Friday!!!

Not got much to say today, was horribly miserable this morning at baby massage, kept crying, silly tart. Lew enjoyed his massage immensely though, as usual. And he enjoyed having lots of ladies to smile at!
After baby massage, we met Granny and went to a couple of shops in town (Home Bargains really is the BEST) and then we came home and Daddy was at home (had a day off to do work round the house) and Philippa (social worker) came to see how we were doing and then Grandad came and Samuel came and Granny and Samuel were doing mad yoga stuff - see photos!!
Then Roz came with Jonathan and Matthew and thats about it really!
Hope you like the photos.
Love to everybody.

Thursday, March 22, 2007

Miserable

Hello, been a miserable day for me, but not (phew) for Lew! Woke up with an unhappy tummy so couldnt take Lesley for her make-over at Lizzie's salon. Did, however, manage to do my exercises this morning, and upgraded from doing them trying to avoid the bed in the bedroom to going downstairs in the lounge, lots more room, with the curtains shut!! And Lew came down to watch and found it very funny! Diane came at 10.30am and bathed Lew while I showered, then we popped to the Post Office to post a parcel of cloth nappies for my friend Ceinwyn and a book that had been ordered from www.greenmetropolis.com. Said bye to Diane (who had had the best time with Lew, making him laugh and smile loads today!) and popped in to see Roz. Lew stayed with Emma for a little while (Emma is looking good on her diet, well done Emma and keep it up, be positive and focus on your goals!) and Roz and I went to Ilva to look at cheapo furniture. Then Roz had to go and do her motherly duties while I went to see my doctor. You see, I have been worried about my mental condition for a bit now (haha yes I am sure everybody who knows me will say - we've been worried about your mental condition for years!!!). It has been getting me down because I see-saw from being ridiculously happy, almost hysterical, wanting to hug everyone and talk constantly about absolute rubbish, saying inappropriate stuff, laughing at not really that funny stuff, and just being a bit mad, and then feeling so low that I can see no purpose in my life at all. Well the doctor is referring me to a psychiatrist (about time I hear you cry!) for a diagnosis and a medication review so we'll see what happens there. This afternoon (for me) was one of my very low afternoons. I could not face being on my own and I could not face going home so with Lew asleep in the back, I went for a drive around and got lost (haha!) and saw some fantastic houses (somewhere called Moss I believe near Askern) and I texted Classic FM (who we were listening to on the car radio) and they read out our text, cooooool! Which made me smile, cheered me up loads which I really needed so thank you Classic FM! Then we ended up in Bentley so I took Lew to the pet shop to see the rabbit and the hamsters and fish and stuff, then we popped in to Morrisons and then we went to visit Jodie's mum Angela for a cup of tea! When Lew saw Jodie, his face just lit up!!! He loves her so much! It was lovely also for Lew to finally meet Jodie's mum and brother and sister (Courtney and Bradley). We had a good chat and I hope we can become friends as we are almost the same age (okay I'm OLDER than Angela, but only by a couple of years!). Then we came home, Jodie is staying over tonight, got Lew in bed - he was sooooo tired! Had some tea and now we're going to sit down to watch Casino Royale (the new James Bond). So that has been our day. Just want to say belated HAPPY BIRTHDAY to my nieces Millie (who was 3 on 18th March) and Daisy (who was 15 on 20th March) and to my mum who was ... dunno how old!! ... on 16th March and to my almost OLDEST friend Rosalind who was 41 on 18th March! Also, welcome home to Yolanda, Stephen and the children who have just returned from a NTM conference in Germany - jet setters! Baby massage tomorrow, then seeing Philippa (social worker) tomorrow afternoon as couldnt face coming home this afternoon to meet her. James is off work tomorrow to do housey things. No new photos to post, but will get clicking to give you all something to look at! Lots of love to everybody, especially Tilly who has blue lips and Eliza who has a new tooth!

Tuesday, March 20, 2007

What a lovely day!

What a lovely day we have had today! We got up early (7.20am I got up, 8.30am Lew got up) so we werent late for group!!! I exercised (hahaaaa!!), had a shower, etc, and then got Lew up and bathed and dressed and we were almost out of the door at 9am!! Granny surprised us with a very early visit at 8.50am and Lew was a bit confused about what was going on (routine gone to pot a bit) but I think he was pleased to see granny as he hasnt seen her (or grandad!) for ages! We said goodbye to Granny and drove to the hospital and found a parking space, hooray! It was still busy though, we were lucky to get the space we did!!! We went inside and waited in the playgroup room for others to arrive. Marie arrived soon after us, then Cole arrived with his mum, then Todd and Toby arrived with their mum and aunty. At 10am, it was just us! No Chanelle, and no Joseph! But Chanelle and Amanda arrived at quarter past (taxi was late) and Joseph and Jane arrived at nearly half past, so we were almost a full set! Claire arrived from portage to play with Lew, and although he was a bit reluctant to relax at first with lots of people around, eventually he was having a great time!!! The children did some cutting and sticking, and then took turns on the computer. Claire was playing with Lew in his giraffe chair, with stacking pots on his table, and the other children joined in - they were taking it in turns to knock the pot tower over! It was so great to watch, everybody became involved and Lewis had the best time being surrounded by his friends and being able to take part too! At 11.45am we went down to the sensory room which was great!!! Then it was time to come back upstairs and time to finish, but what a great group it was!!! Lots of great photos to share! We went across to Stirling Street for musical minis, met Granny there, and Lew gave her lots of smiles! We had a lovely chat with Alison (Samuel's mum from musical minis). Alison is a born fund-raiser by the sound of it and has done parachute jumps, etc (!) to raise money for worthy causes! Wow! What is totally amazing is that Alison and her group of fund raising friends have asked if they can help to raise money for Lewis' fund (for sensory equipment and other things for Lew and for other children who would benefit from these things) and so we will let you know soon when the first 'event' is so we can all give Alison and her friends some support! Especially at the parachute jump!!!! We came home to the warm - what is with this weather?!!! Freezing wind, snow, sunshine!!! - and watched a bit of TV then Samuel came home and because the internet wasnt working (!!!) Samuel sat with us to watch Cheaper by the Dozen 2 on Sky. James has done really well today on his sponsored slim - he has been nibbling on carrots and celery all day!!! Tomorrow we are presenting our BIG cheque to Ward 31 at DRI (£2000) so better put our best clothes on for that!!! We hope you enjoy the photographs from group this morning - you can see how much everybody enjoys the group - children and parents alike - Jill, Rachel and Lynda make it so very special - thank you ladies!!! And if any mums are interested, we are trying to drum up interest in a mums only pamper day at 'What Women Want' here in Doncaster town centre - its the party package, champagne on arrival, 2 hour pole dancing session (with certificate on completion), lunch, hair and make up and a free pass to Flares nightclub .. whohooooooo! So if you are interested, please do let us know! Its not for fund-raising, but we all need a pamper now and then and I think us 'hospital' mums deserve one for sure!

Monday, March 19, 2007

Mothers Day

<--- Some of the pics and cards Lew got for his birthday
Well we hope you all had a great mothering sunday yesterday. All those mums who deserve a rest and some pampering probably didnt get much, but then who is mothering sunday for nowadays? The card shops and the supermarkets!!!! Tesco was packed on Saturday with men (and kids in tow) buying flowers and cards and toiletries to give to Mum on Sunday. Total madness. I bought 2 cards from Home Bargains (the BEST shop in Doncaster) for 49p each and gave them to James to get Samuel and Lew to write in! Thats all I needed, thank you very much! What a fabulous day Lew has had today! We got up late (10am whoops should have been at group at 10am!) and so Marie (Bluebell Wood) came to the house to help get us organised so we didnt miss all of the group at DRI! While I ran Lew's bath, Marie when up to get Lew, and I saw on the camera the biggest smile he gave her - it was awesome! And the morning continued full of beaming smiles! Marie gave Lew his bath while I got showered and dressed, and I spotted Lew smiling and laughing at Marie while he was in the bath! We went to group, but as we were late it took me 300 years to find somewhere to park. I ended up on Balmoral Road (about 15 minutes walk from childrens hospital) so we got to group just after 11am! I had a quick cup of tea and a rest, then went to have a cuppa with Karen, Craig and Heather. Lew did some sticking and then went on the computer with Lynda and Marie. He does LOVE that computer!
Me and my Daddy -->
Eden was in a very happy and cheeky mood, it was such a happy group, but Daniel was very very tired as he's just started sharing a room with his older brother and I think they have spent all weekend waking each other up so he was tired and a bit miserable! After group, we went to see Helen and Ernie. It was lovely to see them again, have a lovely cup of tea and a scrummy sarnie (me) while Lew watched CiTV! We had a good old gossip and Lew even sat on Helen's lap without getting upset, while I went to the loo! It worked the first time, but the second time when we were leaving and I wanted to put my shoes on, he had an RAS on Helen's lap and gave her quite a fright! What a mad day for weather, eh? Sunshine, rain, sunshine, snow?!! We popped in to see Denise, Maisie and Oliver on the way home from Helen's and had some more tea!!! More tired children there, but Lew still enjoyed watching them play and he especially enjoyed Maisie making faces at him! Again (all that tea) I needed the toilet again and Lew had an RAS on Denise's lap, but Denise is used to them by now! And Lew was very tired after a busy day. We came home, had a chill on the sofa for a bit then it was time for Lew's bed. And now its time for my bed too so I can make sure I get up early enough tomorrow not to be late for group!!! Have added 3 photos from last week. Me and Marie singing 'Wheels on the Bus' --> I emailed some of you last week about a postpal, Amelia P. Sadly, Amelia passed away on Saturday - please do go to her website and leave your messages for her family at this very difficult time - www.ameliaprice.com and please remember our other postpals who need your letters and cards and emails - www.postpals.co.uk

Saturday, March 17, 2007

tyres .. grrrrrrr

So what did we do on Friday? We went to baby massage in the morning and Lewis loved it as normal. We did chest and stomach, and then went back over the legs and Lew loved having his feet massaged! After baby massage, we went to Lesley's house and had a lovely lunch (salad sandwich with salad from Kevin's garden!) then we drove to Retford to look round the shops. Lew loved seeing Tobey! We had a good wander round the charity shops and also around some of the regular shops and I got some bargains! At around 3.45pm we went back to the car to head home and both Lesley and me noticed the car was making a strange noise. So just outside of Retford (on a long road with fields and farms on either side and no houses or shops or buildings at all!) I pulled over into a parking area and ... the rear passenger tyre was COMPLETELY FLAT! On our lovely new car that we collected on Monday! Booooo hoooooo! So I had to ring RAC and wait for them to come out. Kevin came to collect Lesley and Tobey as Tobey was tired and it wasnt fair for them to have to hang around, and me and Lew settled down to wait for the RAC! 1hr 40 minutes later, the RAC man came. As our other car (and James) were at a garage getting James car fixed as it had also broken down that day (!!!) our friend Ian (massage man) very kindly came across and helped me with sorting out the RAC man! The RAC man said the car would need to be recovered to home, so we then had to wait AGAIN (no now it was dark!) for the recovery truck to come which was another hour! It eventually arrived and followed us home (me and Lew went in Ian's car) and we got in just after 7.30pm ... very very tired and fed up! The moral of that story is - dont go to Retford, hahaaaaaaaaaaaaaa! And why was the tyre on my BRAND NEW car flat? It had a nail in it!!! Thank goodness, Renault garage have been great and they came out early this morning to put a new wheel on and they will sort out getting the tyre replaced on the damaged wheel and will get it back to us early next week ... phew! What awesome service! So if you are wondering about getting a Renault from the showroom on White Rose Way - I would recommend them 100% - they have been great. When James was back from sorting his car as well (cars, arggh!) we went to Tesco to stock James up on his 'diet' food as he starts his 'sponsored slim' on Monday. Then we went for a walk round the lake with Richard and Luke, and fed the ducks. It was freeeeeeeeeeeezing! Snow has been forecast, and by the temperature and the wind today, I can well believe it! Lew had such a good time round the lake, as he got plenty of attention off his big bro Samuel! Samuel made Lew laugh alot which was wonderful to see and hear! When we got back from the lake, we went to Teresa's for a cup of tea and watched Teresa ironing for a bit! It was lovely to see Bev and Paul who were visiting Teresa as well. They have just got back from a holiday in Egypt and were both looking fabulous! We came home just after 6pm and got Lew ready for bed. Just a quick thank you to our postpal Sian who sent me a mothers day card (aww!) and little letters and pictures by her brother Jamie to James and Samuel. Thank you Sian also for the lovely little bear, for the 'mothers day cheques' and for your lovely home made card. Very much appreciated and reminded me that I need to take a photo of the pictures Jamie coloured for Lew's birthday which I have put on the wall in his playroom! Good night everybody, soooooo tired!

Thursday, March 15, 2007

Sooooooooooooooo busy!!!

Sorry for the long wait for an update! We have been so busy! I havent even checked my emails and have 63 to check so if you have emailed and wonder why you dont have a reply - now you know!! First of all (before I forget) I would like to thank two people. Annmarie (and her family) for the most awesome portrait photographs of Lew which were delivered by her husband on Tuesday evening - I had no idea they were coming, just that Mike was dropping something off - and they really are the best photographs I have ever seen. Annmarie is an AWESOME photographer, some people are just naturals and she is - so if you get to come to our house, make sure you look at the photos (which Annmarie sent up complete with frames so they were ready to display!). Annmarie does all sorts of photography so if you need any REALLY GOOD photos taken, please do think of asking Annmarie! Also, Katie Plant -thank you for Lewis' cards and for the cutest Scooby Doo! Please do keep in touch! And ... a Postpal sent Lew a Winnie the Pooh video - we havent watched it yet, but Lewis was absolutely mesmerised by the front cover and smiled at it alot!! So whoever sent it ... thank you so much!!!! Yes, I know thats three people - but I dont know the name of the third person lol! So on to our busy life! Well on Saturday I went into town with Jodie and Jin Qui and Lew stayed at home with some quality time with his Daddy. I also got to meet Jodie's mum and brother and sister which was so great as I have heard SOOO much about them, but never met so it was really good finally to meet them and they are lovely. And Jodie looks just like her mum and her mum looks half her age - lucky people! Courtney and Brad were very cute and very helpful too, I hope they can come and visit us at home one day and meet Lewis and Samuel. Jin Qui went home as Jodie and I had an appointment, but later I got a phone call from Jin Qui about Xi Sahn. I wasnt sure what Jin was trying to say so we rushed back over to the house and poor Xi Sahn had blood coming from her mouth - alot of it - so they zapped her to hospital and Jane came back to our house to stay the night. Lewis was so excited to see Jane - he really loves her. She is lovely, she talks CONSTANTLY!!! Questions questions questions - but her English is improving all the time - she is practically bi-lingual as she also speaks fluent Chinese (not sure if its Cantonese or Mandarin as of course I cannot tell the difference lol!). We put Lew to bed and then we gave Jane a bath, some tea, then put her to bed as well. I dont think she is used to going to bed so early!! A bit later, I heard her crying and she was missing her mummy so she came in bed with me and slept through until about 7.30am. Lew had a bit of an unsettled night so I sent Jane downstairs to James (more questions questions questions for James!!) and I brought Lew down to bed with me and we slept in until 10.30am lovely! Around 2pm I took Jane back to her mum and dad at the hospital - Xi Sahn is still in - she is quite poorly so please pray for her. Sunday afternoon we went to Tesco (such an exciting life we have!) and then we came home to relax a bit - we needed to after the experience of looking after a 4 year old girl!! Monday came around again - HAPPY BIRTHDAY JAMES!! We gave him his cards and his present in the morning before he went off to work, then we went to group at DRI. It really is the best, we love it! Lew has such a great time! And he has settled in with Marie (Bluebell Wood) so quickly! Its lovely! I am very confident in leaving him with Marie in the group while I go for a cup of tea in the hospital canteen. So Lew played with sand, had his feet in a foot spa (!) and generally had a great time with Marie, Rachel and Jill, and Linda while I went for a cuppa with Karen and Craig and Heather, collected my Avon from Karen (thank you!) and then I went up to see Jin Qui and Xi Sahn. When I came back to the group, the children were just going down to the sensory room so I went down with them! I LOVE the sensory room! Lew loves it too! He sat with Marie and he loved watching Daniel and Eden play and loved watching the bubble tubes, the pretty lights and looking in the huge mirrors! After the group, we sat and chatted with Jill, Rachel and Linda for a bit while they ate lunch, then we went to visit Denise, Oliver and Maisie, who have just got back from their holiday in Dominican Republic!!! Congratulations to their friends Angela and David who got married there! We had a lovely long chat, catching up on the last 2 weeks, and we had a nosey at the building work Denise has had done while she's been away - new kitchen, utility room built in and conservatory still in progress) then we had to zap off to collect ... OUR NEW CAR!!! Roz very kindly agreed to come and help me, by driving my car to the car garage so I could drive the new car back, but we had no idea how long it would take! We were there for over an hour! And Lew had fallen asleep in my car so Roz stayed with him while James and I were inside signing stuff and going through all the ins and outs of having a motability car. Then Lew woke up and Roz texted us to say 'Lew has woken up, I am trying not to turn round so he doesnt realise its not you'!!! But .. my phone was in the car haha! Anyway, Lew was fine and he loves Roz, but he just gets disorientated if he wakes up and cant see his mum or dad. The car is fabulous and we love it!!! After all that excitement, we came home, chilled out a bit then it was time for bed! On Tuesday we went to group at DRI again and it was so good. Its a lot busier on a Tuesday and the parents stay as the children are that bit younger and less independent, and again Lew had the best time! Jill and Rachel had been sooooo busy - they had taken photos of all the children, had the children decorate 'picture frames' and had made framed pictures for all the mums for Mothers Day! We also got a beautiful mothers day card decorated with butterflies that the children had painted! After group, we should have gone to musical minis, but as we sat and chatted with Rachel, Jill and Linda again, until nearly 1.30pm, we went to TK Maxx as we didnt want to go home yet .... and because I wanted to drive my new car round a bit more! I bought Lew a fab bag which should have been £69.99 but was £12.00!!! Bargain! Its really cool, its got squillions of pockets in and a changing mat and all useful stuff you need with a small child, its made by Samsonite and its label is 'Sammies' so thats really cool cos its MINE haha! Its also decorated as if its a tortoise, so cute! We came home, had a sit down and a rest, then it was time for bed for Lew. James was in London overnight at the ACE annual dinner (very posh!) so I had invited girlfriends over for a chinese take away. There were 9 of us in the end - me, Nicola, Jodie, Helen, Rachel, Karen, Olga, Teresa and Van - we were lucky that Van arrived has she had lost her diamond ring! But phew she found it! We had a great time, and Ian was able to come by later to give Olga a massage which she really loved!!! And of course, Ian got to scrabble through our chinese left overs!!! Wednesday, our friend came just after 9.30am - she is such a good friend, helping us out with trying to keep on top of the cleaning every few weeks! And Lew loves her! Then we had to rush about to meet Jayne (Homecare) at Lizzie's house for 10.30am for my waxing yay! We got lost (for a change!) but werent too late! Lew sat with Jayne watching TV in the lounge while I relaxed in Lizzie's in house 'salon' and had all my manky hairy gorilla bits and pieces waxed - including the jungle armpits!!! Then we had a lovely cup of tea and a lovely chat - Lizzie has also become a very good friend - we met when Lizzie did my make up for our wedding in August. Her son, Mavrick, is soooo gorgeous and cute and Lew loved to watch him play! We have agreed that we will make the effort to get out and have a picnic at the park with the weather getting nicer. At 1pm we had hydrotherapy with Kath and Janette. We quickly popped up to see Xi Sahn who was looking somewhat better, and then we rushed back down again to get changed to go in the pool. I went in this time (phew lucky I had been waxed first!) and we had the best time! We must definitely definitely go swimming with Lew (Armthorpe baby pool is lovely and warm and totally suitable) but I need someone who can come with us to help - it needs two adults - so if any of our friends fancy an hour in the pool with Lew one week day afternoon, let me know!!! Then we had to come home and start preparing a feast for James - he was bringing Ena home with him from London (his secretary in London office who has now left to go back and live in Ireland and who also was buying our white car from us) and she had NO IDEA that James had arranged for her work colleagues from the Pontefract office to come for a 'farewell meal'. Lew went to bed just before 7pm. Then Jason arrived (but sadly couldnt stay due to some DIY commitment !!!), then Helen arrived - and still Ena did not realise what was going on! A bit later, Sandra and Barry and Sue arrived and then Ena kind of guessed that something was going on! We had a lovely evening, chatting and eating and drinking, but I was soooo tired that I left them to it (talking about work no doubt) and went to bed around 9.30pm. Today, Jayne is coming at 10.30am, we are going into town to a chinese clinic to try accupressure on Lew, Katie from Bluebell Wood is coming at 1pm (I think!) and then we are going to visit Karen, Joe, William, Bethany, Elisha and Emily - cant wait to see them again! So I think I've caught up now! Will post some photos later when I've transferred them from my mobile to the computer! xxxx

Saturday, March 10, 2007

Old friends

Its so nice to see people that you havent seen properly for ages and to have a good long chin wag! Yesterday we had a lovely baby massage session in the morning then we went to see Karen and Joe. We had a lovely chat, Karen made me some lovely cuppas and fed me too! And Lew watched Cbeebies! Then Cheryl came across with her 2 dogs. One of them, Hollie, I had met before because she was just a pup when I used to look after Cheryl's son Bradley. Now Hollie is a mummy herself and the other dog was her daughter Phoebe!!! Bradley is now nearly 11 years old! Cant believe it! It was lovely to catch on news about Bradley and I did want to say a very special HELLO!!! Hope you are well, and I hope this hasnt embarrassed you too much! Just after 3.30pm, William and Bethany, Elisha and Emily arrived home from school and were very surprised to find that Lew and I were visiting. Lew loves the children and so he was so excited to see them! I had a go outside on the HUGE trampoline which was great! Lew sat inside in the warm watching Joe cook tea - REAL chips! I was gutted we couldnt stay for tea, but we'd already arranged to go and visit Olga, Natasha and Illya so we had to rush off just after 5pm. Lew was very tired from all the excitement by the time we got home so he stayed with James and Jodie and I went up to visit Olga. We had some wine and some crisps (soooo healthy!) and Jodie showed us that she truly is a natural with children! Natasha and Illya loved playing with 'Miss Jodie' and Jodie enjoyed herself too! I popped home just before 7pm to put Lew to bed and then went back to Olga's - poor Olga she must have been tired of us! And poor Chris - in bed after eating a dodgy sausage roll! We've got a busy day ahead - we are going into town with Jin Qui to meet her friend who has a chinese medicine clinic in town. Sahn has been having some chinese accupressure massage and you really can tell the difference so we are going to try it for Lew. Also, thank you to our friends who showed us the article in Woman's Own about The Scotson Technique - I have emailed them for more details. Hope you enjoy the photos from yesterday! PS Janette - do you recognise William? He's soooo grown up now!

Wednesday, March 07, 2007

Some photos

Hello! Have uploaded some photos (not got the Birthday ones yet, boooo!) so wanted to share some with you.
<---In this pic Spencer is giving Lew a kiss!
In this pic, Lew is laughing at Alfie and Spencer trying to bite off Rosalind's tongue! ---->
Lew went in the hydrotheraphy pool with Kath today and he was so good, it was brilliant to watch, he did so well, and was so confident and didnt cry which was just so great!
Rachel and Jill did a surprise Birthday eve Birthday cake at group on Tuesday 27th Feb!
<< Lewis asleep in the car ....
Lewis awake in the car !!!! >>>>>>

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!